Our Johnson Story

Ruby's Story

2011-09-21T09:40:00.001-07:00

Ruby Jane

Here I am below at the hospital right before I was induced. That's right I had to be induced again for the third time. Technically I chose to be induced, but for good reason. My due date was the day before Burke's 4th birthday. And we didn't want to chance having her on his birthday so we chose to be induced four days before his birthday. Now, my doctor and I both were certain this child would come way before her due date considering I was dilated to a 4, about 75% effaced and my cervix was super soft for about a month. But no, she was nice and comfy inside me and that is where she would stay until the induction date. I kept on having braxton hicks contractions (like the last 4 months) thinking any day near the end I would going into labor but I never did. My body was ready, but the contractions wouldn't come. Since I really wanted to experience going into labor myself with out PIT, I asked the doctor to just see if breaking my water would send me into labor without having to use PIT. And sure enough no more than about 20 min after he broke my water I was starting to have real contractions!! This is what I had been waiting for for 9+ months! I was welcoming the pain! It was cool, until the started hurting really really bad. I was contemplating going without an epidural, but who am I kidding. That pain is unreal. So, I finally told the nurse I'd like one and sure enough the doc was doing another epidural right then and that I would have to wait for mine. The contractions got worse and worse and finally it was my turn to have the epidural. I think we barely got it in and working before I was to push. It didn't work as well as the other two I've had. I felt more and could move my legs more than with the others but luckily there was little pain which was a huge blessing! I also did go really numb after the baby came. Ironic.

When they broke my water I was at a 6 or so. It took about two hours from that time until the baby was out. Quick, that's how I like it! I did have to push for about 15 minutes or so- which was way longer than with the other two. The reason could have been because Ruby was way bigger than the others were. They ended up giving me a kick of PIT when I was pushing to help make the contractions harder so I would feel the need to push. (It sort of slowed down near the end and that probably contributed to a longer delivery as well.)

Well, Ruby was born at 11:53 am and was 7 lbs 8 oz measuring 20 1/4 inches long. We are proud and grateful to say that she is healthy, strong and very very beautiful. Her heart was checked out to make sure they didn't miss anything in utero and sure enough, she passed with flying colors. We are sure grateful for a healthy baby!

Grandma Johnson brought big bro and big sis down to the hospital to see their new little sister! they were so thrilled to see her and hold her. Burke was very hyper at the hospital. He just wanted to hold her every second he was there. Emma was very calm and very motherly with the baby. She was helpful and knew how to hold her carefully and to be gentle with her.

We are so grateful she is here in our family. I can't believe it has been over a month since she was born! I'm sure I missed some details in her story, but that is pretty much it. Stay tuned for more posts: Ruby's blessing, First day of school, soccer and a summer time wrap up! (Can't believe it is already fall. I wanted summer to be over with so bad so I could have this baby since my pregnancy was horrible, and now I am wishing the warm weather would stick around for a little while longer. The winters are just too long and too cold for my bones. Oh well. )

Ruby

2011-09-20T20:54:00.000-07:00

Our little Ruby finally made her presence known about a month ago. I can't believe I am finally posting again. The last post I wrote was when we announced that I was pregnant with her and now I am announcing her birth. Awesome. Regardless, she is here, she is healthy, she is adorable and she is our little Ruby Jane! So much has happened over the past month and more that I don't know what to write. So, I am just going to post pictures so I can get to bed soon because she is already down for the night. My sleep clock is ticking. So, please enjoy pictures from her first photo shoot that my good friend Becky Phillips took with Phillips Photography.

HAPPY VALENTINES DAY!!

2011-02-14T18:55:00.000-08:00

HAPPY VALENTINE'S DAY!!!

With Love From,

Emma, Burke and Baby #3!
Baby #3 is due to arrive sometime in mid August (which means I am 14 plus weeks along right now.) The baby is healthy and when the doctor checked the heart- all looks healthy and normal and good!! We told the kiddos about the baby about a week ago and they have been so excited since!
There- our secret is out! Hope you have a HAPPY DAY!

Emma's Ballet Photoshoot

2010-10-14T20:02:00.000-07:00

Well, Emma is nearly fully recovered from her tonsillectomy she had 2 weeks ago. It took until day 11 post op for her to be somewhat her normal active fun self again. Hallelujah! Up until then it was dreadful!!

On a more happier note though, since she has her energy back she was able to go to ballet again this week!! She missed last week's class due to the already mentioned horrible surgery. Here are a few pictures of her in her ballet giddy-up! We recently put her into a small ballet class with one of her other cousins. It was very affordable and we felt she was more than ready to do something on her own like ballet!! She LOVES it! I made these leg warmers (which I make to sell as well) for her and wanted to get some pictures of her in them! These turned out pretty cute- (by the way LIZ when you read this- please be proud that I have learned just a tad bit about photo shop and know that I doctored these pictures up a little. I know they aren't profession-al, but I did it none the less. What do you think- good? Bad? I like them so that's all that matters right? Just kidding. )

Hope you enjoy these of our sweet little girl!!

I give all the credit to Emma for choosing the above pose! Totally an Emma pose for sure!!

I love this little girl's legs. They are so cute!!
She thought the one above was super fun to do as well!! Can you notice she has lost weight from her surgery. I wish I could have known exactly how much, but it was for sure noticeable! I want my tonsils out! Come on!
I made her these leggings thinking they would be great to wear for dance during the winter months. I guess her teacher didn't approve. Emma handed them to me after dance telling me that her teacher told her to take them off at the beginning of class. Whoops! Oh, well that was a good thought. I hope her primary teachers won't make her take them off at church- because that's the only other place she wears them. I guess we will see on Sunday right? Funny.

September and part of October

2010-10-14T19:44:00.000-07:00

I am finally documenting and posting some pictures as of late. Here are some fun one of the kiddos in action. September brought us a new school year- Emma's second year at preschool! She missed the cut off date to start kindergarten this year- which I was more than fine with. I don't want to send my child off quite yet if at all. I might do the whole home school thing!! Schools these days really bother me and it is very scary what is going on in school! That is another topic for another day though!

September also brought new ballet class, which you can see other pictures in a different post.
September brought Burke a new found discovery for a lot of fun things! He is all over the place and has a mind of his own and is very creative and VERY playful!! We love it! He is our little tease in our family for sure. Big sis doesn't like it so much, but he gets a good laugh out of his little pesterings (is that even a word)! Hope you enjoy the random pictures!

Oh, the end of September also brought "Cub-ub" (as Emma used to call him when she couldn't say his name before his mission) - Tyler's nephew Caleb home from Guatemala where he has been serving a mission for two years for our church! It was so fun to be at the airport with like 50 other people all anxious for his arrival! Fun!

This picture is the only one I have of Emma after her tonsillectomy from my camera. I took a few on my phone at the hospital. What a bad mom I am. I have taken so many pictures of Burke at the hospital over the years- and I really failed on this one. But, I felt bad even thinking about taking a picture of her when she was SOOO miserable! She actually looks pretty good in this picture- she was looking really bad for a few days. Her eyes sunk into her head and she got skinny and pale. It was so sad. So, I guess I am glad to see that the only picture I did get was of when she didn't look like she was on her death bed. There, I feel better already. Notice the PINK ice cream- must have for a girl who got her tonsils out!! She is also under a fort Grandma made for Burke when Emma was in surgery! He loved it. Then E took it over.

This one is so funny. He loves babies. He loves his boat that Tyler made him for his Peter Pan cake. Put them together and you get a fun boat ride! He was so proud of this! I love it.

And if you get to the end of this post and are still awake, then you will know that this is not Grandma's house, this is our house and yes we have moved back into it!! Yippe!! We are so excited and the kids love playing with all their old toys again and getting to be in our house again with our little family. This was just taken yesterday. They love to pack everything in baskets, bags, boxes or containers and lug it around the house. Pack rats for sure (Jenny). And speaking of Jenny- thank you for that cute table to liven up our entry way. I will be sad when you want it back someday. And let me know if you would rather us not use it anymore now that we are moved back in. Thanks again I love our fun entry!!

Surgery House, Sick House

2010-10-03T08:15:00.000-07:00

It's about time I posted about our family and what we have been up to! There has been so much going on that I don't know where to start! Let's see, Burke had yet another surgery about three weeks ago. Yeah, can you believe it? He had sinus surgery to relieve his chronic sinusitis that he has had since February, and he got his tonsils and adenoids out!
His tonsils were so infected that they could have been the reason why he has been sick for so long, combined with his sinuses being so inflamed that there was no way for the infection in his sinuses to drain. This poor kid.

Recovery went okay. Some days were better than others. The first few days went really well, but then the scabs from the tonsils fell off and he had a few really miserable days with a big sore throat. About day 15 post op or so (last Tuesday) he spiked a temperature after I put him to bed. I measured the temp at 102.8! I don't think he has ever had that high of a temperature before! It came on so quickly and made his little heart race so fast. We were worried especially about his heart so we decided to take him into the ER.

When I walked into the ER I said frankly to the lady at the admitting desk. "This is Burke Johnson. He has a high fever and he has heart disease." She calmly and quickly asked his date of birth and had me sign something. Then again quickly and calmly she picked up a phone to contact the nurses in the back and said, "we have a 3 year old boy who has a high fever and his mom says he has heart disease." No more than 30 seconds later a lady came up to get me and we were back in the back getting check out. It was amazing. I had the ticket to get back into the ER quickly like never before. I could not believe their reaction. Professional, calm, and very quick. It was awesome. St. Luke's I commend you for how well you dealt with us in the ER that night. Thank you for caring for my child like I would want him to be dealt with.

So, we got admitted that night because after they ran some tests and took an x-ray. His white blood cell count was super high and they were concerned about what that meant. They wanted to keep him for 48 hrs to see if the cultures would grow anything or not. His fever never came back but they wanted to still keep him to watch him. By the middle of day two (not quite 48 hr yet though) Burke, in my eyes, was more than fine to be discharged. It took the rest of that afternoon to get all the doctors to agree to let him go. So, after 2 nights and two days we were released from the hospital. The next afternoon he was to go into the pediatrician to get the test results back. They came back negative! He must have caught some sort of virus that caused a random temperature. He is a little congested but is back to normal for the most part. He is his active crazy self again!!

Now onto Emma. She got her tonsils checked by the ENT due to her getting sick frequently enough. I thought too, since tonsils were infected in Burke, that probably they were the culprit in Emma's case. She enough her tonsils were infected and large as were her adenoids! Super fun.

She was due to have her tonsils/adenoids out on Oct. 1st. Burke was discharged from the hospital on Sept. 30 (Thursday) and Emma was to be at the Surgical center at 9 am on Friday morning. We just wanted to do our best to keep the ENT, the hospital and the pharmacy in business! It is our pleasure! You can thank us later.

Her surgery went very well and was quicker than expected. Her adenoids were huge and the tonsils were huge and very infected. Her tonsils were bigger than Burke's were. I got to see them- pretty gross. I got a picture on my phone but I don't know how to get them off my phone and onto the computer. So, sorry no pictures. We stayed in the post op recovery room for about an hour and then were released. Weird. No PICU admission like Burke. No oxygen required. No over night stay to make sure all is stable. This was totally different than Burke's surgeries. How nice it is to have a child who is healthy and does not require all the special medical needs. I am so grateful for the tender mercies of the Lord.

Day one and two post op went great. Today though, day three post op, is a different story. She is hurting more today and won't take her pain meds. as well as the past few days. She is also not drinking as well. She is sleeping more today and resting more as well. Hopefully we can just get through this quickly. She is a trooper and reacted better the first few days post op better than we expected. Today though is more how we thought she would act- totally uncooperative! That's okay though. Things will get better. I feel so bad for her. I bet she is in so much pain. Having just been through this with Burke not long ago, her recovery is so different than his.

So, there you go. And update. Oh, I am sick again too. Sore throat and congestion. It is crazy how I usually get sick in a way that helps me be more empathetic to what the children are going through at the same exact time. Being a mama of two children who have both had surgery in the past two in a half weeks, and who have both been sick recently also, means that this mama is run down, exhausted and is running on little sleep. Happy days! But, we are alive and Burke is not in the hospital so we are grateful for our health, and to the Lord for watching over us through our tough time. He really has been there for us.

Stitches

2010-09-24T15:32:00.000-07:00

One of the many reasons I have been M.I.A. from the blogging world lately is that I have started my own business called Stitches LLC!
Stitches is my sewing business where I sew and create a Bunch of different fun items for babies, children, teens and their mama's too! Go check it out at my new blog called of course... stitchesllc.blogspot.com and my ETSY site called Stitchesllc. I am really excited to begin this new and crazy journey!

Here is a LIST of the items I can sew and create, but is not limited to these:

*Holiday specialized pillowcases
*aprons (for kids, teens, and mamas)
*crayon rolls
*diaper/wipe clutches
*taggie blankets (Lovey's)
*soft toys for infants
*'bowtique' bows
*fabric hair pieces
*bibs
*burp rags
*washcloths
*paci clips
*car seat covers
*baby legs
*magnets
*blankets
*bow ties

Here is a preview of my first item I put up on my New Etsy Shop. Go check it out to order that one, or send me an email if you already have fabric in mind and I can custom order anything you wish! Thanks again! Hope you all have a Spooky Halloween too!

***Tell your friends! And stay tuned for some up coming Boutiques I will put my items in!

***I do custom orders as well! Just leave a comment or email me at lilcamper8@gmail.com!

8/28... or BUST!

2010-08-27T20:58:00.000-07:00

I just got this picture emailed to me today while my brother and his 3 oldest kids were on their way by car to Washington DC for the 8/28 Restoring Honor Event! We wanted to go so bad to witness this historic event in person! I guess we will just listen to it tomorrow. Here are the details on glennbeck.com.

***Don't know what 8/28 is?***Well check it out here. You aint gonna want to miss this one. I'll be watching will you?

Peter Pan is "Free"

2010-08-23T11:19:00.001-07:00

...also pronounced "Three"! On Saturday we celebrated Burke's 3rd birthday! I can't believe that we are celebrating his 3rd birthday!! It seems with all he has gone through he should be like 50 yrs old! We are so grateful for the Lord for sparing his life so many times throughout his life. The Lord is so merciful. He came here to earth to receive a body and to teach me and my family and those around him what this life is all about. He has taught us so much and still teaches us everyday. I am so blessed to have him come to our family. I am so grateful that he and Emma not only look so much alike but they act alike and they LOVE being siblings. I love it how she calls him "brother". I love it how he calls her "sister".

I love it how much he is enjoying his life with out oxygen and a feeding tube. I am grateful for the experience we had while he was on oxygen for he managed it so well and just went with the flow of having to be hooked up to a long cord for most of his life up until last December. I am grateful for that experience because now I appreciate Burke so much more now and appreciate not having to deal with the burden of the oxygen. I am grateful for how much I have learned through the experiences and trials we have gone through with Burke being born with Heart Disease.

I am grateful for all the doctors for loving and caring for Burke like he was their own. I am grateful for his surgeons and for how close to the Spirit they are while in surgery. I am ultimately grateful for the Lord's mercy in our lives.

Here are some of the pictures from Burke's fun day. He was happy the second he woke up! I just loved it! This birthday he actually knew what was going on and that made the day so much fun. It was his first birthday with out oxygen and with his heart fixed so we just played and had a great day. He even gave mommy a great present by taking a nap! The family in town came over to give him presents (which you guys didn't have to do) and to celebrate his life with us on that glorious day!! I just thank the Lord everyday for him and that his heart was able to get fixed.

Okay, I wasn't able to put captions on any of these pictures- it's acting funny or maybe it's just me. But you get the idea of how his day was. My parents wanted to get a bike for him and so I checked around for a long time on craigslist and at stores for good deals, we finally found one by calling Sam and Kathy and they had Graham's old bike that was in great condition that we got from them. Burke did great riding it the first time! Tyler's present to Burke was a wooden rubber band gun that Ty and Emma made together. It was a hit! He LOVED IT! Ty did a great job on it. You can tell in the picture where he has the purple birthday cape on looking at his cake that he is shooting Captain Hook (at point blank range) on the ship (that Tyler also made out of wood) on his cake. It was awesome! I think this birthday was the best ever for him!! It is so sad he is growing up! Enjoy the pictures. Thanks everyone who came to celebrate his life with us!! We love you all!

This last picture is so stinkin cute- he attached to this red heart balloon early in the morning and would NOT let it go! He was in the pool with it! I just love him.

Burke,

We love you so much little buddy! And I am grateful for you and your determination to keep going everyday even when you think you can't possibly go through one more surgery or procedure, or one more illness. You will get through this, I know that for a fact. Heavenly Father is with you everyday, every minute and every second of your life- never forget that. Never. You have been a fighter ever since you were born and you have NEVER given up and I commend you for that. You are truly and inspiration to me and everyone who hears of your story. You have been through 4 open heart surgeries (not counting the two times they opened you up with in a 24 hour period), 5 heart catheters (also surgeries), 1 tongue clipping surgery combined with ear tube surgery, and 1 last tongue clipping surgery just last month. You have been through more than most people have in their lives and you have stayed happy, and kept on eating and living despite all that.

I want you to know that your mama loves you, your daddy loves you, and your big sister Emma is the best big sister ever for you. I know for a fact with all my heart that she was sent here and supposed to be your big sister. She has been amazing help to me over the past few years and she is amazing to you and helps comfort you when you are sad or sick. She is the best and I want you to never forget that. She loves you so much. Your grandma's and grandpa's love you and all your 50 plus cousins on both sides love you as well.

Never keep going buddy. You amaze me and I can't wait to watch you grow up (slowly of course) and experience this wonderful life our Father in Heaven has created for us to experience. I love you with all my heart, "Lion Heart". Thank you for coming into this world "open- hearted".

Love always,

Mama

Talk Radio

2010-08-16T21:41:00.000-07:00

Photo taken in March of 2010, My Dad with Emma and Burke

This post is for my dad. A Vietnam Veteran. A Patriotic man. An American. And Proud to be it.

Dad,

You will be proud of me. I know you will. I did something that you did ALL growing up. Every summer when we would mow lawns with you- ya, like every summer since I was 5- we listened to KFBK 1530 talk radio. Yep, I admit as a teenager I could care less about talk radio. Boy did I just dread listening to boring talk radio on caveman AM radio. I did learn from it though, and Paul Harvey (sp?) was funny, (it was Paul right?) I can just hear it loud and clear, because it was very, very loud blaring out of the old truck radio, "Now, for the rest of the story..." Classic. Just classic. That and classical music was the only two radio waves that seemed to ever come out of dad's truck radio.

Well Dad, I listened to talk radio for the first time, WILLINGLY, the other day. I turned on the radio and turned it to AM 580 in Idaho to listen to The Glenn Beck Talk Radio Show. I thought you would be proud that I saw the light of talk radio. Not all of it is good, of course. (Side note: like Dr. Laura- she is someone who is a supposedly a "professional" who gives advice to people on air who should NOT be allowed to give her "professional" advice any longer. She is AWFUL!! And I have tried to call in to talk with her personally because I think she is impatient, mean, and down right off base when it comes to dealing with very personal issues in real people's life.)

But I feel that all the times you made us listen to talk radio it mattered to you in your life at the time. Politics matter in your life. Saving and protecting marriage and our families as we know it matter in your life and mom's life when both of you helped in California to support Proposition 8. You stood on the side of the road and held signs to defend Proposition 8. You and mom stood for what you believed in then and will stand forever for what you believe in. Because it matters.

So, I thank you for showing me all those years to search for knowledge to better ourselves. It is education that we all should seek for. It is knowledge that I am seeking to better myself. We as Americans need to seek for education as well to help us dig ourselves out of the deep mess we have gotten ourselves into. It is our duty.

I now claim that I listen to talk radio. And I like it. Really like it.

Love your daughter,

Rachel

"Paul Harvey, g'day"!

SHHHH! Don't Tell!

2010-08-14T10:22:00.000-07:00

SHHHHH!!! Here's a sneak peek at the fun we will have next weekend on Burke's 3rd Birthday!!! This is part of his present. I am going to make a holster for a wooden rubber band shooter that Tyler is making! We are so excited to give these homemade presents to Burke this birthday! I think he will love it, don't you? He asked for a Captain Hook/Peter Pan Cake where they are fighting on top of the cake. We will see Tyler's cake making skills put to the test on this one! More pictures to come on the big day! (back)
(front)
(back with mask to match)

Burke Health Update

2010-08-13T09:43:00.001-07:00

Here is a health update on Burke. Short. Concise. And. To. The. Point. (Something I'm not very good at)!
Burke got off his 3 week dose of antibiotics for the H Flu last Thursday. By Monday morning he woke up with a flaming cold, congestion, cough, runny nose. BLAH! Which means that that certain antibiotic did not completely get rid of all the H Flu present in his body. We luckily had his 3 week post-op appointment with Dr. Beck who did his tongue clipping surgery and found the H Flu in his airways. She ordered a CT scan in her office of his sinuses. We went. Burke was a CHAMP! We went back up stairs for the results and she discovered his sinuses completely packed with infection! That means that this H Flu has attacked his sinuses and we have been treating it like it originally attacked his airways. It probably attacked his sinuses and the leakage has drained into his airways!

The solution: Another 3 week dose of a different antibiotic. Two different prescription steroid nasal sprays to help control inflammation in his sinuses. Still continuing the breathing treatments (two times a day) while wheezing continues in his upper airways. Will stop those when no wheezing is present. I have Mucinex on hand for "yucky junk" in his airways making him cough and gag. All those meds. are given daily not to mention the 3 heart medications he is currently still on for his heart.

There you have it. The shortest blog post I have ever typed regarding Burke's health.

Oh, did I mention Burke was also up for 4 hours in the middle of last night for WHO KNOWS WHY!?? Yeah, mama ain't so happy about that!

Here's little brother with the big sister. They are awesome and I love them so much.

Guns and Roses

2010-08-01T20:49:00.000-07:00

My children are a lot alike. They look alike, their personalities are a lot alike, they are super strong willed and they are very bull headed. I wonder where they got those traits from? (yep from BOTH of us). They are independent, inquisitive and determined. Emma is a tom-boy. She loves being outside, she wears her cow boots and she is very active. She also plays with her boy cousins a lot mostly because the one she gets along the best lives right across the street. Her and her Weston play a ton together. Not so much lately because summer has been busy with vacations and things, but when they play together they have such a good time. They love to stay busy "working" for their play time. I just love it.E and B at G'ma's with their saggy bottom pj's and their "cow boots" on.

So, all up until Burke was old enough to walk and play I thought Emma was a lot like what raising a boy would be like. I loved it because I thought I was going to get out of the drama that comes with a little girl. Oh was I wrong, and in many ways! Burke is a BOY through and through. This kid was born with a natural sense of what little boys should grow up doing! He was more mellow as a baby but recently he has come into his own and is obsessed with "shooters" and swords and sticks that can become "shooters" and life cereal that when broken into pieces become "shooters"! I am not kidding! This kid was born to make the shooting sound. And he's good at it too. I can barely even do it.

This fetish came awhile ago, but really took on a life of its own when we moved back to Boise when Burke was playing with his four boy cousins across the street. Boy was he in BOY heaven! They had "shooters" and light sabers (I don't even know if that's the way that word is spelled) and fake swords and nerf guns and so on. He soon took some home back to grandmas and it was all over from there. I gave in a few weeks ago and bought him his first "shooter" because the ones he borrow from his cousins soon became damaged and broken. I brought him a cap gun. Hey, I did not buy him the caps though! Tyler said when I told him it was a fake cap gun he said, hey you didn't buy any caps, come on!! I think our two year old better not play with those until he is older. I am putting my foot down on that one! He loves it and he puts it in his pockets and in his Peter Pan costume pocket so he can shoot Captain Hook. Burke in his "Peter Pan Costume"! love it.

To sum it up. Emma is still a tom boy- which I love because I was a big tom boy when I was younger. Yet she still has her girlie girl side. She loves to cook, to put on my makeup including mascara- by herself, she loves to dress up and have tea parties, and sew, yes sew, and do all the little girlie things that little 4 years old's should do. Burke is boy through and through. Oh man it is in his blood and I love it!! Shooters, and monsters and bad guys and captain hook vs. Peter pan is all we hear about from him. He is black and white. Good guy bad guy. Good vs. Evil. I love it. Yet, there is a little sweet Burke still in there who will cuddle with his blanket. And love his baby that G&G Bates found that we left at their house way back in May! Yes, that is right my little boy plays with a baby doll. It is a cute cabbage patch baby that I got a DI. It cleaned up nicely in the washing machine and it has been his baby for over a year now. I love it because now more than ever, with his fetish with super boy things, he can still be sensitive and loving towards something when he otherwise would be shooting at everyone and everything in sight!

Just tonight when I was putting him down in his bed, he found his baby and said to it,"Ooh baby, I love you baby. I love you baby. It's okay baby, don't cry. Mom, baby was crying down here all alone. You should have come down and held my baby when he was crying." I guess we still need to work on the whole taking responsibility thing. Oh well.Burke and his cute little naked baby.

Emma and her cute little dressed baby.

I love my kids and their personalities different and alike even when they can be unreal and out- of- this- world- super- hard- to- handle. I still love them and I am grateful for who they are and their spirits and personalities that they came into this world with! I can't wait to add more little kids to our family and when the Lord sees that that needs to happen it will and I am just trusting in him that it will happen when it needs to. But until then, over here in our neck of the woods we will be continually fighting Captain Hook and singing made-up Smee and Captain Hook songs for bed time lullaby's. We will be continually overseeing the makeup application and the baby doll dressing and the sewing projects. We got the best of both worlds- the guns and the roses!

The picture above reminds me of two people. First, of Tyler of course. Any of his family would know that Ty lived in cow boy boots as a child. He would try on anyone's cow boot and he loved it. But then the second person it reminds me of is my older brother Dave. In high school Dave thought he was pretty cool and so did the girls. He was into himself so much that when he got out of the shower- which he did like 3 or 4 times a day because of sports- he would stand in front of the mirror and flex his muscles! I would always thought he was so funny to do that. He is so not like that anymore, but in high school he was all about how big his muscles looked! When I really looked at this picture I had to chuckle because I instantly thought of both Tyler and Dave. It's ironic too because they are both the same age. Funny.

Pictures of Emma posing. She was so cute that day wearing her new fourth of July bow that I made just the day before.

Emma and Evie her little cousin in Grandma J's dress ups. All the grandkids dress up when they come over to grandmas. There is a wide variety of dress ups for both boy and girls. And sometimes the boys even come out sporting the girl dresses with matching wigs- it's pretty fun to see their creativity at work!

An American

2010-07-29T12:48:00.001-07:00

I am an American. I was born in the United States of America. I am proud to be an American. This is my homeland. I will forever be proud to call this beautiful country my home. But is America today what it was intended to be when our Founding Father's built this free nation? I don't think it is the same America. It has changed over years and years of distorting the fundamental laws of the land and most importantly the laws of God. And it is changing now more rapidly than ever. Our freedoms are being taken and stolen right out from underneath us. Our liberties are almost gone. Our families and the family unit is being attacked. Outright attacked. Our economy has tanked and will probably not be stable again for a very long time- at least until the people in the government now are taken out of office. Our nation, our America, is changing, and not for the good. I feel change is good when it is in the right direction. Our nation needs to change and become what our Founding Fathers intended it to be. The lived and died for this country and for a nation that would have a government led by the people and for the people. Our government today is too large and it is not a good government.

We the people of this most amazing nation need to stand up for the principles that this nation was founded upon. It is high time that we make a radical change back to the basics of the laws of nature and the laws of God. It is time to fight for what we know is right. Our government is corrupt and evil and needs to be corrected before it is too late. We have got to do our part in helping restore America back to what it once was. And we can do it. We have to, it is part of our duty as American's to uphold the principles and standards of a free nation or we will not be able to have it any longer. That is all there is to it.

Recently, I have become more interested in our Founding Fathers. Partially due to many factors. Partially due to a theory I have come to understand more called "A Thomas Jefferson Education". This is a theory of how learning and understanding should be acquired. The Founding Father's were education men. They were learned in the classics. They were learned in a wide variety of subjects and they were taught in their homes. I have found this theory of education to be very though provoking and very inspiring. I want to implement this into my family and with my children.

Another way that I have come to yearn for a better understanding of the Founding Father's is from Glenn Beck. Now some of you will just quite reading right there. But don't. I say gain your own opinion of Glenn Beck before you make assumptions about him. I say he is a modern day John Adams. Adams, lived and he died for this nation. He made sacrifices that would be unheard of to make in today's world. His family and his wife made significant sacrifices for this nation and all so that they and we could experience life, liberty and the pursuit of happiness here in America. Glenn Beck, yes is a radical, but so were many of the founding fathers. Glenn Beck is sacrificing much for this nation right here right now. He is fulfilling his duty here on earth. He is trying to obey God's commandments, he is trying to uphold good standards, and he is fulfilling his obligation to protect the principles and values that this nation was founded upon. And I applaud him for all his work.

Yes, you can critic him on all his mannerisms and all his quirks, but if you really listen to what he is trying to teach on his shows (radio and TV) and if you do your own research to figure out for yourself what he is teaching is true or not, then you will being to see that what he is trying to do is to help save America. That is ALL he is trying to do! Please go check out what he is trying to do everyday on The Glenn Beck Show. He also has an amazing special on Fridays called Founding Fridays in which he tries to showcase the founders of our nation in an effort to try and teach America about our heritage. For we have an amazing American Heritage! His shows are at 5pm and 2am ET on the Fox News Channel. Please check him out and see what you think.

I have been to many of the American historical sites and seen for my very own eyes these amazing places were even more amazing people came from and dwelt. I have gone through many history classes. But, it has not been until I am gotten older and had children and a family of my own that I really have come to yearn for there to be a restoration in America back to what it once was. I am scared for my children if we allow this evil government to continue doing what they are doing. They are slowly and in a very manipulative way taking away our life, our liberties and our pursuits of happiness's. I am scared for my son who was born with Congenital Heart Disease. All along he has had great medical care. What will happen when we go to the social health care plan? What is going to happen to our doctors, our nurses and our abilities to receive the care that is necessary for advancements and technologies to flourish? How good will our health care be when "Obama-care" is put into action? It is scary and I hope we can put an end to the evil that is happening in our big government as we speak.

There are many things that I worry about in regards to this nation. We must do our part in helping change the course of direction for our nation. It is our duty. God blessed us so much that he put us here on this continent so we can uphold our duties and obligations. We must start now. We must get educated. We must. We must educate our children. We must teach them morals, values and principles of God's law, and we must teach them in our homes. Heaven knows that with the government and leaders in power now these values will not be taught in our schools. Yet we must continue to keep God and these values in our schools. We must become statesmen. We must become patriotic again. We must uphold the standards that we set when the Founding Father's so amazingly orchestrated this nation's government. We must fight to restore that government. Of the people, by the people, for the people. We MUST!!

**Here are some of the books I have started out with in my quest to become more knowledgeable and to gain a better understanding of what I can do to improve this nation. I highly recommend all of them.

"A Thomas Jefferson Education: Teaching a Generation of Leaders for the Twenty-first Century" by Oliver DeMille

"Leadership Education: The Phases of Learning" by Oliver and Rachel DeMille and Michele Smith

The Bible

The Book of Mormon

"The 5,000 Year Leap", by W. Cleon Skousen

All of the books from Glennbeck.com

The Classics

The Test Results Are In...

2010-07-23T15:05:00.000-07:00

...Warning! This post contains some graphic pictures of Burke's post-op nasty tongue and of his bronchus! Just to warn you it might be pretty gross!

Yesterday, I was able to talk with the doctor's office that Burke had his recent surgery through and they got back the test results from the swabbing of his bronchus (which are his airways leading to his lungs). They tested them to see if there were any food residue from either aspirating food as he ate it or from aspirating it as he refluxed it. I don't know if refluxed is even a word- it sounds kinda funny. Anyways, there was no trace of aspiration at all in his airways!! I was so thrilled and relieved when they told me that because if there w
as, he might have been put back on a feeding tube if he was aspirating what he ate. They could have fixed the reflux issue with medicines but I was thrilled to say the least that it was neither of those two issues.

Well, what is it then you ask? I asked as well. Burke tested positive for the Haemophilus Influenzae also known as the H flu or HIB! There is a vaccine for this type of flu and I know Burke received it but he still was able to catch it. The H flu is a bacteria causing inflammation in his airways causing obstructions. It can also cause ear infections, pneumonia and many other upper respiratory issues along with the more dangerous meningitis! If you go to that link above it defines the type of flu it is and the symptoms and so forth. I just read it and I can't believe it, it is totally what Burke has had probably since February! Burke got really sick way back near the end of February with a bad cough that lingered and eventually turned into pneumonia. He was put on a 10 day dose of antibiotics yet he still didn't get all the way better for another 6 weeks. He was finally getting better when he got it again. This lasted on and off literally until June. All our previous doctors in Arizona just called it bronchialitis (sp?) - which he probably had as well but he was never cured of the actual problem that caused all his upper respiratory issues.

It wasn't until we got back to our old doctors here in Idaho that we really figured out a plan to find and fix Burke's respiratory issues. I am so grateful for our ENT Dr. Beck (she is the woman in the center of the picture on her website- she is AMAZING!) who felt it was necessary to do the bronc and to really find the problem. He will now be on antibiotics for three weeks and hopefully that will rid his body and airways of the infectious disease. If for some reason he still has issues after the dose of antibiotics is done then the doctor will re-evaluate and figure out a plan from there. I am really hopeful that the antibiotics will help take care of the H flu and get Burke back to a normal healthy life!

Alright here is the part you have been waiting for. Pictures. The picture below is during his surgery when Dr. Beck performed the broncoscopy. She scoped his airways and found this nasty inflamed airways that are very narrowed. The circle drawn in on the left bronchus picture is how big the airway is supposed to be. These two pictures below are of Burke's tongue one or two days after surgery. We were getting a little worried about the swelling of his tongue, but with some help of some steroids and some time it eventually got better. Look at the size of that thing. And if you notice the tip of his tongue is turned to the left side of his mouth. Isn't that gross? You can see the stitches as it goes almost to the tip of his tongue.
This one has bad lighting but this is the underneath side of his tongue. He just went through the meat grinder man. The poor little guy could barely eat or drink with that huge swollen tongue in his mouth! He adapted pretty well and ate regardless. He is doing better and better everyday and he is almost back to his normal active self!

The Burke and The Emmalade

2010-07-21T16:57:00.000-07:00

Please go over to my sister's photography blog at Red Bucket Photography and check out what awesome work she did in photographing my kids. She is awesome and if you are ever in the Mesa area call her and set up a time for her to capture your kids! Burke was unreal that day, but we ended up with a ton of Burke. Emma is very compliant in photo shoots, well I shouldn't say very, but she will at least smile at the camera even if she won't do the pose we tell her to do. It has to be her own idea then she will be glad to be all smiles for us! Thanks Liz for all the many photo shoots you have done for our family! We love them! Here's a sneak peak at the post. This was a few months ago when we still lived in AZ! (And by the way I made that tie he is wearing which I bought the pattern from an amazing site called Make It and Love It. Go check that site out, Ashley who started that blog is AWESOME!! And she and my sister Liz went to college together. Who knew she had such amazing talent in her? She really is inspiring. Buy the tie pattern, you will not be disappointed- I've made about 10 ties for Burke and probably as many for Kyle and Carter- Liz's two boys!

Day 2 Post op

2010-07-21T14:59:00.001-07:00

Well, I can say everyone in these parts is doing 100% better today than yesterday. Burke woke up happy and had a TON of energy this morning and is doing and feeling a ton better. His tongue is way less swollen and looks better overall. He is hungrier today and is actually able to eat better as well. He is tired now that it is 4pm and he didn't take a nap at all today. Oh well, he will go down really easy about 7pm for bedtime. I love when he goes down early!

I have pictures of his tongue and will hopefully post them later on tonight! I am so glad that Burke is getting better and better everyday. Oh, how I love when life normalizes! Until next time!

Burke's Post-Op Recap

2010-07-20T14:10:00.000-07:00

Burke's surgery went really well yesterday. The doctor clipped his tongue pretty good and put 10 stitches in on the bottom of his mouth and also on the bottom of is tongue that go all the way out to the tip of his tongue. It looked pretty bad right after surgery but is recovering okay. It is still pretty swollen and we have given him some steriods to help with the inflamation. Since his tongue is so big he can barely talk and barely eat or drink. His talking has gotten better, but he still is very tenative when trying to eat.

The second part of the surgery was to check his airways for scar tissue and she found none what so ever. Yet she did find a significant amount of swelling and inflamation all throughout his upper airways and down into the broncus which goes off to the left and right lungs. I have some pictures and will try and post them later if I can, but it looks pretty bad. The swelling is restricting his airflow and that is what is causing him to wheeze and sound congested most all the time. The pulmicort steriod breathing treatments have been helping because it helps with inflamation in his airways, yet it is not solving the actual problem. She took some samples of his airways and sent them for testing. We will know more in a few days what the results are. She thinks it is either from aspirating or from relux. So, he is back on reflux meds and will be on his thickened diet until we know for sure what is causing the inflamation.

Recovery went as expected yesterday. He was pretty mad and confused when he was waking up from anesthia. He actually was REALLY mad and almost pulled out his IV and all his other wires he was hooked up to. They gave him some pretty strong meds to help him settle down and after about a half hour of thrashing he finally gave into sleep and sleep most of the day. He was transfered to the PICU and was there until we were discharged last night. We thought we would have to stay over night, but our WONDERFUL ENT Dr. Beck saw how miserable Burke was to be in the hospital and told us we could be discharged that night. Oh, how I love when doctors are practical! He slept great last night and woke up happy this morning. He was still gruffy to everyone else, but I did see a smile that he gave to me when he first came up the stairs when he woke up. I'll take that for sure.

So, today his tongue is still swollen and we are trying to wait it out and see what it does with the medicine we gave him for it. He is sleeping now, so I hope that will help a lot. It is for sure helping me because I have so much to do today! I even tried to get organized before I left for the hospital yesterday, but it is amazing how much gets piled up with me being gone for just one day! AHH!! Anyways, I guess all I have left to say is that we are still alive and hanging in there through the crazy recovery period. He is almost way more normal after this surgery than his other bigger surgeries in the past, yet his is so tired and I am sure his massive tongue is just driving him crazy! I did not take any pictures because our camera is out of batteries. So, this post is again a no picture post. I will post updates with pictures of his new tongue- once I get batteries and once his tongues goes back down to a normal size.

Thank you for all your thoughts and prayer phone calls and emails. We love you all and are grateful for your love and support!

Burke's Surgery Tomorrow

2010-07-18T16:48:00.000-07:00

Well, Burke goes in for a surgery first thing tomorrow morning. This surgery will be a broncoscopy along with a tongue clipping surgery. The bronc will be to check for any possible blockages in his airways. Our awesome ENT suspects there is a blockage in his airways right below his vocal cords causing him to wheeze. This blockage is most likely from all the many times Burke has been intubated over the past few years. Scar tissue has developed and is blocking his airway. The ENT will laser the scar tissue out and hopefully it will not come back.

Burke's tongue is the other reason why his is having this surgery tomorow. His tongue has been clipped two times already and this will be the third time. It must have become tightened again over time which is very rare and is unheard of to have to clip it this many times. His tongue being tight has caused him to not swallow appropriately which makes him aspirate the thin liquids like water, juice soda and sometimes even milk. Aspirating is when food or liquid goes down the trachea or his airway into his lungs instead of going down the esophagus into his stomach. If enough liquid goes into the lungs he could get infections and that sort of thing- which he has had in the past. The aspirating also irritates his upper airways where the blockage is and causes him to wheeze which makes Burke's breathing labored.

We are very excited for this surgery and really have hope and faith that this will help Burke's health overall in many ways. He will hopefully not have to do the two nebulizer treatments he has had to do this past month to help control his wheezing. His oxygen levels will hopefully increase and stay at a normal percentage. He will hopefully feel 100 percent like we had anticipated he would feel after his heart was fixed. We are hopeful. So, keep us in mind tomorrow. Burke will do great I'm sure and we will be out of there on Tuesday with a new kid, probably back at the whole shooting thing again. Man I love this kid.I just thought I would record what we are going through at this time in our lives and to inform everyone about what is going on with Burke and his health. Wish us well and say a little prayer for Burke. We would appreciate it very much! Thank you!

"And here we have IDAHO!"

2010-07-13T21:57:00.000-07:00

As I'm sure you can tell from the previous posts that we are no longer in the desert heat of Arizona any longer. We are now back in a "normal" climate again of which we are so grateful for. We LOVED our time down in Arizona and miss living right next door to my sister, but we are also grateful to be home again. Tyler graduated from Arizona State University back in May with his Master's in Real Estate Development. He has been searching for a job since even before school got out but nothing has turned up thus far.

So, as of yesterday he is self employed again and is currently a Real Estate Agent in Idaho. So, if anyone is looking to move soon or know of anyone who will be moving- Tyler is the man for you!! There is my plug! Email him at tylerjohnsonemail@gmail.com. Tyler has always wanted to be self employed, but we thought that he would work for a big company gaining experience first and then eventually be self employed doing his own development business. But, life doesn't always turn out the way we plan. So, for now Tyler will be selling homes and or land to support our family for the time being. He is a very hard worker and I know everything will work out, it just gets a little nerve wracking sometimes. He moved into his new office yesterday and got right to work. I am so proud of him because he continues to keep his head up and his feet moving in front of him to find something to do for employment and has not given up in any way. Thank you so much Babe for all you do!

We are currently living with Tyler's parents and loving being able to run and play in the nice big yard. The kids especially love living at Grandma and Grandpa's because they are loved so much and they get to play with all their cousins that live in town and come over to grandma's to swim and play. Now that the weather is finally hot enough to warrant wearing swimming suits, our daily routine involves swimming out in the pool. Emma has really come into her own and has taken to swimming really well. She can now swim under water without floaties or life jacket- which she insisted on teaching herself with an occasional help from mom and dad. We wanted to teach her, but she is so determined and so independent that when ever we tried to help it only made things worse. So, she decided to do it her self. One day she told me that she wanted me to teach her swimming lessons with her in the pool and me watching from outside the pool. Okay. That was fine with me because I am slowly learning that with Emma it is all on her terms. If it is her idea, she does it and things work very smoothly, but if it's not be prepared for WWIII. She is now brave enough to jump off the diving board and go down the slide all by herself. It has been so nice now that she is comfortable in the water and not scared of it.

Burke is also loving the water and hangs out on the steps or in the little unheated hot tub with his cousin and buddy Henry. They have a ball together which is a fun thing for Burke to have a good friend. They are exactly six months apart and they are about the same height and probably weight yet complete opposite in appearance. Total opposites. Crazy. Burke pretends to "swim" across the hot tub. He sees Emma getting a lot of attention for learning how to swim and so he wants to get in on the action too- it's pretty cute. He is doing well and has a ton of energy these days. I will give a better update on Burke tomorrow, but overall he is a new kid. He is definitely two. He is a hoot to watch him pretend play these days. We are so grateful for his life and his strong spirit which has carried him through many hard experiences.

My life consists of trying to keep up with sister and brother, making and going to appointments, and taking care of daddy bear and trying to stay sane along the way. Stay tuned for a more complete update about Burke's health and progress since his surgery in December and what his road looks like in the future!

"Mom, I wanna shoot a bear!"

2010-07-11T18:52:00.000-07:00

Said the little brother to his mom.

The family of four set off for a picnic under the Aspens at the south end of the Ranch where daddy first took mama on a picnic when they were first dating. We rode horseback back in those good ol' days, but today, it was on the saddle of a four wheeler that took us to the gorgeous setting under the shade of the aspens while the tamarack trees gazed on in the background. The grass was long, extremely long, for this year the spring showers have been many in these parts and the land was fertile and lush. Our "fourleler" arrived at the sight safely and daddy and sister chose the picnic spot. It was perfect. It was serene. We ate, we chatted, we shooed the bugs away and we took some great snap shots to remember the day. Sister picked the flowers and brother holding tight to his "shooter" shot everything in sight."Riiiinnnggg!" or was it"Viiibbbbrratttee" went daddy's cell phone from his pocket. It was Clark, daddy's brother. Our family and his family were the only two left at the Ranch after the Johnson Family reunion ended only the day before. They were also on a family picnic enjoying their "tree" on the Ranch where Clark and Jane carved their names into a special tree of their choosing many many moons ago. Daddy was explaining to Clark where we were at when all of a sudden daddy spotted a visitor making his way down the mountain to where we were. "It's a bear! There is a little baby bear! I uh, gotta go Clark... uh it's a bear..." he spoke excitedly as he handed the phone to me hanging up with Clark suddenly. He grabbed the camera as we all starred on. We could not believe our eyes! There was a black baby bear just having a Sunday stroll down the mountain. He plopped down to rest as he studied us watching him with wide eyes and wider smiles! Sister was excited a first. Brother was too. But they both didn't really get mine and daddy's excitement of seeing and actual bear on our Ranch.We took many pictures of little bear and then some of me and the kids with little bear off in the distance. Then daddy wanted to get a closer look. Yes, you heard it right. So, off he set to get a "better" picture! I know, I was sort of very nervous at this point, because when ever there is a baby bear, there is a mama bear somewhere close by. You know how us mama's are- we never let our babies wander off too far especially if strangers are near. He got pretty close until the baby started off up the mountain. Daddy came back thinking he would rather not encounter a mama bear close up. Smart move daddy.
The whole time while we were watching little bear watch us, I thought Burke is going to want to shoot the bear for sure. I mean what an easy target he is right there in front of us, we really did nothing to search for the bear at all. Burke held his gun and maybe once or twice thought to shoot the bear but never on his own. I had to pursuade him to "shoot" the bear with his wooden weapon. I just had to chuckle. The entire time at the Ranch he has wanted to shoot bears, and shoot animals and "kill" them, but when it got down to business, the real sheebang, my little one had no shootin instincts. I guess that is the way I prefer it to be. For play and pretend and not for real right?
As the bear headed up the mountain it stopped once to check us out again and then it kept on going up further up the mountain until we could no longer see it in the thick forest. We told brother and sister that it was going back to be with mama bear. And it probably was, but for us we luckily did not meet mama bear that day. Thankfully. What a time we had that day. We just felt bad that we scared it off a little too quickly for the Clark Johnson's to be able to see our new friend. Maybe next time we will see our little bear friend again. Until next time little bear. Burke will be bigger next time so please watch out. And we will for sure watch out for you because I know you will be much bigger next time we see you as well. Take care little bear.

Back in the Saddle Again!

2010-07-11T18:19:00.000-07:00

If those pictures aren't convincing enough then I don't know what is.
The Johnson's are back in the saddle! Giddy up! Stay tuned for more Johnson family fun and adventures!

Eating, Playing, Sleeping

2010-03-14T16:23:00.000-07:00

Around these parts we eat hard...

Homemade bread, homemade boysenberry jam, and lots and lots of butter (not homemade)- need I saw anymore. The pictures are worth a thousand words.

play hard...

A mud puddle+ little boy with "cow boots" = these AWESOME pictures!
...and sleep hard!

Two Surgical Patients Meet

2010-03-12T14:57:00.000-08:00

Meet Sister Moss. Some of you know her but for those who don't this post goes out to her. She is a small sweet English woman who was my neighbor most of my growing up years. Our road we lived on was named after her family as she and her husband owned a lot of the land around my childhood home.

A few months ago she fell off a stool in her kitchen and broke her hip. She is still recovering and doing well. Ever since she heard about Burke and his heart from my parents, she has been praying for him. She always asks about Burke and how he is doing from my parents when she sees them at church. She always tells my parents she is praying for him.

My mom thought it would be sweet for her to meet Burke after his heart surgery. She thought it was a great surprise. And it was nice to have the two post-op patients meet.

Burke was so cute he showed her his scar and was so cute around her. Emma on the other hand wasn't but that's another story.

It was nice to chat with her and see her again. Thank you Sister Moss and everyone else like her who have prayed non stop for Burke over the past few years. All the prayers have helped. Truly. Thank you.

Grandma and Grandpa's Before and After Surgery

2010-03-12T09:28:00.000-08:00

Here are a bunch of pictures of when we were at mom and dad's before Burke's surgery and then for a day after the surgery before we headed home. We had a great relaxing week when Burke's surgery was postponed. I basically did nothing. It was awesome. We just sat around the house and watched B and E play. We did get off our tails and do something here and there like crack a huge bag of walnuts, decorate the Christmas tree, eat, visit with family and friends, eat a little more and talk a lot. You can tell which pictures are from before and after the surgery because of Burke's oxygen tube. (Hint: he has it before surgery and he doesn't have it after). Enjoy!

Grandpa bought each of the kids a mini hammer so they could crack the walnuts themselves. Dangerous. Luckily B was sitting by grandpa and not me. I think grandpa got hit only a few times! By the expression on his face, I think he LOVES it.

My good friend Ashley and her husband Steve came over to visit. Her sister was speaking in Church that day and they just happened to come to our home ward and so we saw them and I finally got to meet Steve. How long have you two been married- like 3 years and I hadn't even met one of my best friends' husbands? Crazy huh?! Anyways, they came over after Church and it was so good to see her and catch up with her. So, long story, but she took these pictures of us with mom and dad and believe it or not we didn't even think to get a picture with them. I couldn't believe it. Sorry Ash. Looks like we will just have to see you again soon to make up! Thanks for taking the pictures though, they turned out great!

Tom and Maya came to visit before surgery. They kids were enthralled with them, it was great! Thanks for being great sports Tom and Maya!

Emma's Christmas ornament that Grandma gave to her- an angel with her name on it. She loved it, thanks grandma!
Classic Emma picture above. Multi-tasking. Talking on the phone with cousin while decorating the Christmas tree at age 4. AWESOME.

We went to see some new baby goats that were born only a few days before these were taken. My dad prunes these people's trees and they let us go and check out the new babies. The kids loved them (except when Emma thought that the mamas were going to come and eat her)- thanks dad for taking us out there!

Emma's Special Christmas

2010-03-07T15:04:00.000-08:00

Emma was able to have a fun and special Christmas this year. Since Burke was in the hospital over Christmas we had to send Emma somewhere else to be taken care of. The first 5 days while B was in the hospital, Emma stayed with my parents. She had a blast! She loved playing and working outside with Grandpa planting flowers and working inside with Grandma making cookies and baking.The picture above is in front of the house I grew up in. I just love this picture.My parents recently sent us some pictures of the flowers Emma planted with Grandpa over while she was there in December. It was fun to see what she had done especially since these are my favorite flower!! Thanks grandma and grandpa for the fun couple of weeks!!

Emma then flew with Grandma Johnson back to Boise to spend Christmas with Tyler's sister Becca and her family. She has always gone to their house while Burke has had his surgeries and she wanted to go back again. She LOVES it at their house! She fits in perfectly and is like one of the kids. Katerina especially loves her since she doesn't have a sister. Emma is the fill in sister and Katerina loves it! Here are some of Emma's special Christmas away from home. It was bitter sweet for us. There was no way it was going to work out to have her at the hospital with us since children who aren't being treated in the hospital cannot go into the hospital, but we knew that she was being loved and cared for well at the Labradors!
Here is Kat with her "little sis"

The kids waiting to open their presents

How Becca saved Christmas. This year the story doesn't read, "How Santa saved Christmas," it was definitely "how Becca saved Christmas!" for sure. The baby that E is holding above was a $7 purchase at Walgreen's on Christmas Eve. E had told EVERYONE that Santa was bringing her a baby doll. I had sent all her Christmas gifts up to Idaho with her and was confident that the 5 or so little doll house dolls would suffice. Oh no. Those to E was not a baby doll. Oh no. So, Becca being an experienced mama, sprang into action. Literally on her way home from spending Christmas Eve with the whole family and grandma's she stopped at the corner Walgreen's hoping there was a baby doll that would do. It was small but perfect, and the price was great too. She bought it. Christmas morning came and E was NOT disappointed! After she opened it I guess she told everyone that she knew Santa was going to bring her a baby doll. Thank you Bec for saving the day and my tail. She didn't get the idea ingrained in her head until right before Christmas. She is so funny. One more baby doll added to the pile make like 6 babies for E! She kills me.

E was obsessed with their cat Bella. She is just like how her mommy was when I was little. I LOVE it!

She fits right in with their cute family!

These last two are from grandma's house. They aren't the greatest quality I think they were from a camera phone, but this is a very classic holiday setting at grandma J's and I love it. We sure did miss going home to Tyler's parents house this year. We skyped the family one time during the holiday to see if we were missing anything and sure enough everyone was just sitting on the couches just talking and hanging out. Classic. We weren't missing a thing everyone was just sitting around. I love it! We really did wish we were there though even if it was just to "sit around"!

I know E had a wonderful Christmas-her first Christmas away from home (we start sending them off when they are young.) No, but we do appreciate everyone up in Idaho who cared for and loved her when she was up there. She didn't want to come home at all. It has been such a blessing to have her go to The Labrador's every time B has a surgery. She just knows that's where she goes and she LOVES it! They are so good to her and it is so good for her to play the younger child every so often. I think she still takes over at their house though, so we gotta work on that! Anyways, thank you so much!

Tom and Maya

2010-03-05T19:52:00.000-08:00

I know, I know I am HORRIBLE at updating my blog. But I am finally doing it, so here goes!

This post goes out to my oldest brother Tom and my sister in law Maya! We were able to see them a few times while we were in California for Burke's surgery. We were so grateful for their love and support during that stressful time. Maya is a doctor and so we were able to talk with her and pick her brain about the medical questions I had. They came to the hospital a couple of times and one time in particular Burke absolutely LOVED seeing them! We also loved seeing them. When ever we had company it helped our moral so much. It helped Burke's moral also. I know he was super bored with looking at that boring hospital room and boring mom and dad day in and day out.

My parents came to visit and help support us and see Burke also. It was so great to have them near also. They were a huge help! Here are pictures when they and Tom and Maya came. Good times were had by all. It was a beautiful day and we were able to take Burke out on the roof to get out a little. He LOVED it!

I think this blowing picture is by far my favorite of Burke. Maya was trying to get him to exercise his lungs and blow the flower petals out of his hands. He could barely do it, but he was determined to try. It was so cute.

Here is Tom and MAya with Burke at the awesome train at the hospital. This was our saving grace many a times. This picture is blurry of them but I love the look Burke is giving them cause it was the look he had on his face the whole time they were there. He was entranced by them and I loved it!

Tom is a teacher and he is so great with kids! He was helping Burke walk down the hallways. It was so fun to see them together.

Thank you Tom and Maya and mom and dad for coming out often to see us and help give love and support to us while Burke was in the hospital. We don't get to see my brother Tom very often and it was great for my kids to get to know him and Maya better. They were both so good with our kids and it was a nice break for Tyler and I as Burke was clearly entertained by our guests! Tom and Maya you are welcome anytime at our house- but as a warning my kids would probably be OBSESSED with you guys! We love you and hope to see you both sometime soon and thank you again for everything!

Pictures, pictures, and more pictures!

2010-02-05T07:52:00.001-08:00

These are in chronological order from where we left off before Christmas.

We're BACK!

2010-02-04T20:01:00.000-08:00

Well, here I am posting nearly a whole month after we arrived home from the hospital with Burke. He is doing GREAT and loving life with out oxygen and the feeding tube. Yep, that's right- the feeding tube it out- for a 5 week trial basis. But, it is at least out for now. We are really hoping and praying that he will gain weight over these next few weeks so we can leave the "gross" tube out! As for now he seems to be eating like a champ. We were worried at first, but now he seems to have more energy to eat and he actually asks for food and tells us when he is hungry! That is progress for sure!

Like I said above we have been home for awhile. Time just flies by! Burke is now 7 weeks post op- and I can't believe it! He has more energy than ever before. He does get tired every so often but he runs, plays, sings (a lot) and now has enough energy to ride his trike! He talks and talks and talks now like never before. He even pretends more now too. He is our little puppy now who barks like a little puppy and crawls around the house on all fours acting like a dog! He never had the energy before to even think of doing things like that. He always left that up to Emma, but now he takes over and plays a ton!

We are also adjusting to life with a new and changed little 2 year old boy. Bed time was soooo easy with Burke before his heart was fixed. He would simply go right to sleep after stories and songs with out a whine or a cry. If he ever did cry he would get tired out so quickly that he would just go right to sleep. Now, Mr. Burke has attempted to climb out of his crib! He tried that maybe ONCE before this surgery, but he didn't have the energy to hardly get his leg up on the side of the crib let alone climb out! But now! Oh man. He gets up on the side of the crib nearly every night! Yep, we have a normal 2 1/2 year old now. He cries when it's time for bed. When I lay him in his crib he immediately jumps up and cries for me to "WAIT"! He protests now and tries to get out of going to sleep by asking for food. He is good, because right now, there is NO WAY I will tell him he can't have food. If he wants food no matter day or night he gets it! Yep, he's good! So, for all those out there with normal 2 year olds- I need help! I haven't dealt with a two year old in a long time- I'm a little rusty!

Boy are we so glad to be home. We are enjoying the sun and weather here and are LOVING it! Over all we are doing well and enjoying our new year with new and exciting experiences. I have so much to blog about; like the rest of the time in the hospital, these last 3 or 4 weeks being home, our new resolutions, and Tyler's birthday-it's today by the way!!

We have so much to be grateful for and I see the blessings and tender mercies of the Lord in my life everyday just looking at Burke. He is a miracle and I am grateful he is still here to live and experience what this life has to offer! I will post pictures soon- I promise. And I apologize to all those who have been following our blog and waiting to see what was going on with Burke. He is well and we are well. Thank you all for all the prayers- they have made this miracle come to pass. We are grateful for your prayers and faith. Thank you!

Merry Christmas

2009-12-24T18:34:00.000-08:00

Merry Christmas!

Progress

2009-12-22T16:03:00.000-08:00

Burke has made a lot of progress today. He is more calm today than yesterday by far! He was thrashing a ton yesterday but today they said he is acting more like a normal patient would and how they prefer him to act. When he wakes up he is calm and more reasonable than he was yesterday.

Milestones for today are- the LAP line is out with Burke's help! That line is measuring the pressures in his left atrium and is sewn into the skin so it wouldn't get dislodged too easily. Well, Burke decided on his own that it needed to come out this morning. So he just rolled over and undid some of the stitches! I guess it was pretty crazy in here after that. They get worried if that gets pulled out because there could be residual bleeding in his heart if it occurs. They did an ultrasound to make sure there wasn't any damage internally and thankgoodness there wasn't! There was quite a lot of bleeding at the site of the stitches so they had to give him some blood to make sure he had enough from what he lost but then also give him a buffer if it decides to bleed a lot more later. They were planning on taking out that line today anyways, Burke just wanted to get that going!

When they were trying to give him blood they found that most of his IV ports in his hands and feet were ruined in the whole ordeal. As a result they had to pull two maybe three of those out. Burke is a man who knows what he wants. They do have to put another line in for emergency situations which will stay in until we leave, but they will do that tomorrow.

They have also weaned him down on his oxygen flow which I am so glad because he hasn't been able to eat on the high flow cannula. He took his sippy cup just great! Actually he has been asking for a drink since yesterday! So, today he has taken a ton of water. He is still groggy from the drugs but he is doing great now that he can drink again. He fell asleep just a little bit ago so we haven't fed him solids yet but we will later on today. And they don't want to rush into too much food too soon.First time drinking from his favorite sippy since before surgery!

Tyler held Burke today for the first time since surgery. I went to take a nap at the hotel and Ty got to hold Burke and Burke just LOVED it! They fell asleep together and had a two hour long nap together! Total bliss!

Being held for the first time since before surgery!

So, for the really good news... they think he will probably be moved to the floor tomorrow which is one step closer to going home. And one of the doctors said that MAYBE just maybe he would be ready to go home for Christmas!!!!! I don't know if I should even say that so I won't get too disappointed if it doesn't happen, but wouldn't that be amazing if we could get out of the hospital basically a week post-op! They say that he is progressing great and there is not much more they need to do for him in the hospital.

I have been worried about if he will be able to eat enough or gain enough weight to get discharged from the hospital, but they say he doesn't necessarily have to gain weight in the hospital in order to get discharged, he just has to prove that he can stay hydrated. He loves his sippy cup so hopefully he will keep progressing nicely over the next few days and we will be out of here!! YIPPEE!!!

They also took out his feeding tube when they extubated him. I am so glad they took it out for many reasons but the main one is that they can't rely on it and just start feeds through the tube of which I am SO glad!

Like I said early they are weaning his oxygen slowly. They will take him off the oxygen all together tomorrow!! I can't even believe it. I mean that is what this surgery was supposed to do- get him off the oxygen- but I just can hardly comprehend Burke not needing oxygen. I get totally and completely excited and giddy inside to think of the possibilities for this little guy!!

Extubated!

2009-12-21T14:50:00.000-08:00

Burke was extubated around noon today! What a wonderful thing! Look at how good he looks! He got pretty agitated afterward for awhile. He is still in between sleep and awake with all the drugs so he doesn't know what he wants nor do we. His voice is still a little horse from being intubated but it should come back soon. He did manage to get out a word which was yes. He answered a question I asked him. He is so sweet. They gave him some meds and he is now sleeping and looks really comfortable. His vitals look great and the pressures in his heart actually came down after the tube came out which all the doctors were a little confused by but can't complain.

There is some bleeding which you can see in the pictures. It is under his dressing on his chest. They took out his chest tube earlier this morning and when they were getting him ready for extubation he got a little agitated and was moving around a bit which caused the bleeding. After a chest x-ray and an ECHO to make sure it wasn't any of the lines that are sewn into his heart for monitoring purposes, they decided it was just from the chest tube. They do not want to sew another stitch to stop the bleeding because they said it would just pool inside so they are just going to watch it and change the dressing as needed. It will stop as they give him some platelets.

They also took out an IV line, his rectal probe in his bum that measured his temperature, and his urinary catheter. Luckily they did that all before they woke him up to extubate him.

That is the update for today so far. They are very pleased with his progress thus far as are we. We are still amazed with all he has been through he is doing great. We just hope and pray that sometime soon we will be able to reason with this little one as he wakes up more.He looks pretty comfy! Don't you think?

The Exodus

2009-12-20T20:20:00.000-08:00

Since I am caught up with Burke's progress in the hospital I thought I would back track a little bit and blog about our trip out to Stanford. Here are the kids with Kyle before we left! Kyle didn't want us to go. And the kids have been missing him while we have been gone. Kyle also went through Emma/Burke/Rachel with drawls.

We thought we would take our time driving and break up our trip a little bit. The first stretch was from home to LA. We stayed with Tyler's nephew and his family for the first night. It was fun for Emma and Burke to get acquainted with Evie their cousin once again. Summer was the last time they saw her. They also loved seeing Chet their new cousin. Both our kids wanted to hold him a lot. They LOVE babies! Here is E with Chet. Thanks Jake and Grace for letting us stay with you guys!!
From LA on we decided to take the 1 up the coast of California all the way to the Bay Area. Tyler wanted the scenic route and it was sooo worth it. It was a little long, but the kids did great and it was so fun!! We stopped many times to get out and check out the coast. We saw some interesting things on our drive. We saw zebra with some cattle. Yep, that is right- Zebras just hanging with the cows! That was right along highway 1 on the land in front of the famous Hearst Castle. We wished we could have driven up to see the castle, but you have to take a tour in order to go and see it. That was an interesting historical site. And they have had some interesting exotic animals brought in to add to the site.
Next we saw these awesome Elephant Seals! Ty got out to see if he could spot any before we got the kids out, and sure enough he spotted this whole beach just full of them. It was awesome. We were only about 8 feet above them. They woke up a few times to look at us and growl at us. The kids thought they were neat. Taking this route was great for our little family. We have never really been on a real family vacation-outside of Utah or Idaho where we could just relax and take our time and enjoy the sites. It was WONDERFUL and I smiled a lot during our drive up the 1.
We stopped just out of San Luis Obispo at this great beach. We got the kids out and they loved it. Burke was more interested in the waves and the beach than Emma. She stayed far away from the water- I guess she is still traumatized from the last time (her first time) we went to the beach after Disney Land. I kind of forced her in the water so we could wash all the sand off. Let's just say she HATED it. She was basically screaming bloody murder. Poor girl.
We got Burke these cool shades for him before our trip because he is always telling me the sun is in his eyes back home. It gets pretty bright there for sure. He wore his shades quite a bit on the trip- he loves them. He used to wear Emma's- that was a funny site. E checkin out the ocean with her wild post-two-french-braids- look! Classic.
Tyler has really gotten interested in Photoshop lately. Since he has had plenty of extra time because Burke's surgery was pushed back a week, last week, he decided to play around with a few pictures he took of the ocean. He thinks it is a little too photoshopped but I think they look awesome! He has a creative mind and is very detail oriented so photoshop is a good fit for him. He can photoshop all day some days. Nice work babe! Part of the 1 is very curvy and the road is right on the cliffs and the drop is about 500ft down to the ocean. Not so much fun. Right at the begining of this curvy part both kids fell asleep and were out for a good 2 1/2 hours! It was so great. Tyler and I were able to have a normal adult conversation!

Well, we ended our trip in Palo Alto two days before surgery. He had pre-op testing the day before the surgery was supposed to happen. That day mom and dad came and got Emma and took her up to their house. She was so excited to spend the week with Grandma and Grandpa! Then that night we picked up Jan, Tyler's mom up at the airport. She came to be with us for surgery and the few days post-op. We picked her up and headed to San Fransisco Warf for dinner. It was a great night and we were so excited for surgery the next day, or so we thought it would happen the next day. Burke's face in this picture is awesome. He was in a funny mood that night.

Changing the dressing

2009-12-20T19:55:00.000-08:00

Last night was the first time the nurses were to change the surgical dressing after surgery. If you click to enlarge the picture you will really be able to see up close the stitches holding his chest together. This surgery was different from the past in that they used stitches on the outside of his chest instead of internal stitches. These ones will have to be taken out- not fun. They also used glue to hold the top part of his chest together near his neck. It is like super glue! But overall his chest looks awesome! Burke your bone is fixed!! Before surgery we kept on telling Burke that Dr. Hanley was going to fix his heart and also his bone. I guess we told him enough times because he started telling other people that he was going to have his bone fixed, and "my heart". I love this little guy!
This picture below is just to inform everyone that we are still alive. Thank you Jan for all your love and support and for coming out for the surgery. It was great and we really appreciate it! Overall today has been okay. Burke has been waking up out of sedation quite often throughout the day and when he does he gets pretty upset. Finally, by the evening time they realized that he was probably not going to wake up any happier and that tomorrow they will extubate him in an effort to keep him a little more happier laying in bed. I have a very strong feeling that they are right!! He tries to protest everything that is going on by shaking his head and kicking his legs and feet even when his eyes are shut and totally drugged up!

So, tomorrow is the BIG day!! The doctors say he is doing great and he is looking good. We know that once that tube gets out, he will be on the fast track to getting outta here! We will post tomorrow once the tube comes out. We mostly can't wait because then he will be awake a lot more!

ECHO

2009-12-19T16:44:00.000-08:00

Well, Burke's ECHO turned out great! They checked the function of his heart and all the chambers and everything looks and sounds great. They don't see anything wrong and will just watch the numbers on the monitor and try and keep him good and comfortable throughout the coming days and nights. We are so relieved that nothing was wrong with the function of his heart. All is well!!

Post Op

2009-12-19T14:47:00.000-08:00

Yesterday was pretty uneventful which we are learning after going through 3 previous open heart surgeries, uneventful is the way to go. They took off the paralytic drug yesterday around noon. They thought it would wear off about an hour after that, but he didn't end up moving until late afternoon. They were not worried about him not moving for so long, it just will postpone his extubation. They thought that maybe he could be extubated late today, but he is fluid positive and they want him to have less fluid in his body before they take the breathing tube out.

He had a good night last night and this morning has been going well too. We are learning that post op recovery time is a balancing act! They change and tweek his meds frequently to keep him happy and calm. They might order an ECHO later on today because his pressures in his Left atrium sometimes creep up. They were planning on doing an ECHO tomorrow before they extubate him, but they just might order it sooner to make sure all is well in his heart. But overall his vitals are reading very well and heart and lung function are doing great. His lungs are starting to experience some fluid movement but that is expected because he is moving around more. It is good to get everything moving and working in there and as the days pass by he will eventually pee off the fluid out of his lungs.

He has opened his eyes a few times today, but he has seemed pretty agitated so we try and calm him quickly because he still has the breathing tube in and they don't want him to pull it out or to damage his throat by moving too much. So, needless to say they keep him pretty sedated. Tomorrow they will get him to wake up more and hopefully by late tomorrow they will get that breathing tube out and Burke will be a lot more comfortable with that out of his throat.

We haven't taken many pictures just because he is still in the same bed, nearly the same position and hasn't changed much since he came out of the OR. But, here are a few of what he is going through. These were taken Thursday right after they got him into the CVICU (Cardiovascular Intensive Care Unit) just after surgery.

This time around he has been way less puffy and swollen. They say altitude plays a big factor in that and also the expertise of this surgeon. We are amazed still with all Dr. Hanley has done for Burke. He only has one chest tube this time around instead of three- also due to the altitude.

Well, as I am at his bedside writing this, the doctor just came by to tell me they are going to order an ECHO to check out his heart. I don't think this is anything to be alarmed by but we will just have to see. I better go now.

A Success!

2009-12-17T18:15:00.000-08:00

The surgery was a success! Dr. Hanley fixed Burke's heart! I can't believe I am actually writing that!! Burke's heart is now a normal working heart! They fixed everything that needed to be fixed and all went well! They expect his oxygen levels to be normal. They expect him to run and play like a normal child, no more huffing and puffing. They expect him to not need another surgery for 5-10 years!! Yeah, you read that right! Years, not months! I just thank our gracious Lord above for overseeing this surgery for I know He was there helping. We are just speechless. Totally speechless.

We will be able to see him in about 30 min. He will be intubated for few days but recovery could be quick and they don't anticipate anything going wrong. Now that doesn't mean nothing will go wrong, but just that it shouldn't. We are just grateful for this full repair surgery. It has been a long road coming. We are eternally grateful for this incredible blessing from Heavenly Father.

Surgery Has Begun

2009-12-17T10:50:00.000-08:00

Well, we just met with Dr. Hanley. He is now back in the OR ready to open Burke up. Burke is all prepped and ready to go. The surgery can take anywhere from 6 to 8 hours. Primary's gave up hourly updates, but this hospital doesn't do that. We should hear though in about 2 hours or so if they will be able to close the hole in his heart or not. They will send word out to us when the surgeon knows what he will do. He sounded confident in closing the hole, but this morning he wanted to make sure we knew that there is still a chance that they won't be able to close the hole. We are hopeful, very hopeful.

This time taking him back into the OR was hard because we know what he was going to be up against these next few weeks. I just want him to be comforted through this time and I know Heavenly Father will do that. They gave him some medicine to make him good and happy. He was pretty giggley before I put him on the crib they took him back on. We will try to keep everyone updated. I forgot my phone so call Tyler's if you need. Thank you for all your love support and prayers during this time, they really help.

Here he is as they are taking him back to the OR. He looks good and relaxed! We love you buddy!

SURGERY...POSTPONED!!

2009-12-13T17:16:00.000-08:00

Well, as some of you know, Burke's heart surgery was postponed on Thursday. We were all set and ready to go, I mean we were checked in pre-op testing done and in the waiting room and everything. We were just waiting for the surgeon to finish his case before Burke's and into the surgery waiting room walks the surgeon. We were so stoked. We thought he was coming in to talk and meet us before surgery. Here the moment we have been waiting for for so long was finally here, or so we though. The first words out of his mouth were, " so, we have some bad news". I just about died. Our hearts sank. He told us there was another case that needed emergency surgery right then and that they would have to postpone surgery until next week. They wouldn't have any bed spaces for a few days for after surgery so they can't do surgery until Thursday of this week!

Our hearts go out to the family who has the teenage boy who was in heart failure to the point where he needed emergency surgery. We can't help but not be too disappointed because it was exactly a year ago when Burke and I were on a plane being flown down to Primary's for emergency surgery where Burke bumped someone else who was on the schedule. In a very small way we are returning the favor. Our hearts go out to that family.

So, our plans have changed yet again! We are now staying at my parents house where I grew up until surgery. We have been praying like crazy that Burke won't get sick this week and that his bone growth won't get infected! We are doing good so far. So we are just hanging out and enjoying some time with Grandma and Grandpa Bates before surgery. We will keep posting updates when we can. Thank you for all your prayers and thoughts during this time and sorry to keep you on your toes for those who have been waiting for an update. Thursday is THE day!!! We can hardly wait!!!!!

Ode to Mr. Blanket

2009-11-22T10:55:00.000-08:00

The other day Burke hurt himself some how and sweet Emma came right over gave him his blanket and sat down right next to him. She put her arm around him and starting quietly giving him words of comfort. I love when she is like this. It melts my heart. This is one way Burke receives comfort.

Another way Burke is comforted is by his blanket. This blanket deserves a post in and of its self. So...

... here is our ODE to MR. BLANKET: This blanket was made by most of Burke's girl cousins on Tyler's side of the family and by Grandma Johnson. The story behind the blanket goes as such. So, last July of 2008 Burke was scheduled for a heart catheter and possible surgery. We really thought that by that time his arteries had grown enough to warrant a surgery which would be the full repair. And if the arteries hadn't grown there would be some sort of surgery to help the arteries to grow more. So, the Johnson family all got together for a Fireside to start off the annual Johnson Reunion. Each year the fireside is different and sometimes has a theme to go along with it. This year Grandpa chose miracles in general but with his testing coming up he thought that we could think about the miracles associated with Burke. The meeting was wonderful. It was spiritual and to look back on that meeting we have come a long ways not only with regards to Burke's heart growth, but with my spiritual growth. I am grateful for that time where I can look back on that meeting and know that I have a loving family who has been a part of Burke's many many miracles and who supports and comforts us through this time.

So, after the meeting Grandma J and all the nieces gathered around little Burke to give him something. I had no idea what they were up to. This is when they presented Burke's Lion heart blanket to him. It had a Lion's head on it out of the shape of a heart with the mane being the thumb prints of all the aunts, uncles and cousins. In the corner it says, "Thumb body Loves Burke." The ears are made from cuffs of an old shirt because Grandma knew that when Burke was a baby during the winter time when he was wearing long sleeved shirts a lot. He used to suck on his two middle fingers on his right hand and pull down his cuff into the palm of is hand an suck on it as well. When the weather started getting warmer and I would put short sleeved shirts on him he no longer had a cuff to suck on. He would actually try pulling down his short sleeved shirt to suck on it but he could never figure out why it wouldn't come down like his long sleeved shirts would.

So, because this Lion blanket was a very warm one it wasn't until the fall time that he developed a strong connection to it. I started giving it to him at night time and he instantly was drawn to the "taggies" as we now call them on the lions head. Those cuffs from the shirt that were the lion's ears were the taggies that Burke holds and smells and finds comfort from.

We continued to go to the doctors monthly for tests and it was at those times at the hospital that the blanket became a must have item. It soothed him. It comforted him. That blanket has been everywhere. It has been everywhere at Primary Children's- in the Cath. Lab, in the PICU, in the x-ray, in MRI, and even in the OR. Blanket has been there for Burke when he wakes up from all of his testing and procedures. Blanket has been my right hand man because I haven't always been able to comfort him. Some kids just want their blanket. And that is Burke. And you know what- I LOVE it!

Blanket is there for Burke everyday and has helped him and me. Burke is continually getting more and more tired. Some days are better than others but for the most part he is gradually getting worse. He gets tired out super easily. He is still on his feeding tube and after feeds he gets tired because his heart is having to work harder to deal with the food that was artificially put there. Especially after feeds Mr. Blanket is there to help me help Burke to realize that he needs to take a break or he will throw up.

I tell Burke he needs to take it easy or he will throw up-all the time. I just have to get him to understand his limits because sometimes he just pushes past his limits resulting in throw up all over him and me, an not only that, he usually coughs and gags for a good while after that and his sats go way low because of it. Not so good for the heart you know? Anyways, today I was playing puzzles and blocks with him- some quiet toys- so he wouldn't exert too much energy because he had just had a feed. I told him, "Burkie, you need to settle down bud", and he replied back to me saying, "because I will throw up...and cough....and gag?" No joke. That is what he said to me. He is actually remembering to settle down. I just looked at him amazed, and said " yes, you will throw up". I love this kid. I can even tell him to go get blanket so he can hold the taggie while he sucks on his fingers. He did while we were playing today. He will lay down on blanket and now, he will even talk to his blanket. NO JOKE! He talks to it, gives it drinks if he thinks it is thirsty! I LOVE IT!! This kid is amazing and so smart, and kind, and funny and creative. I am amazed daily with what this little kid does or comes up with. He has a great teacher/ example to follow being that of his big sis who is creative also.

Anyways, there you have it- on record now- The Story of Mr. Blanket. Did I mention he has multiple names; Mr. Blanket is probably to top name, Blanket, blankie, blank, bankie (which is what I used to call my baby blanket that I was OBSESSED with), and there are probably more but that is all I can come up with right now.

So, I want to shout out and give a HUGE THANK YOU to all his little nieces who sat down with Grandma and brainstormed ideas of what blanket to come up with. Each of them gave their input and each of them helped hand stitch the blanket. I want to say to all of you- that this is THE BEST blanket in the WORLD! You guys will never know how much this little "comfort" has really done to help comfort our little guy with everything he has to go through.

One very smart nurse at Primary's labeled the blanket with medical tape so as to not loose it. It reads: "I BELONG TO MR. BURKE." I love it. I kept it on and hope it keep it on for a good long time. It is starting to come off with how often I have to wash it.

Here are just some of the MANY MANY pictures we have of Burke with Blanket.
This picture is funny for many reasons, but I have to mention that Burke's obsession with sucking his fingers and smelling his taggies has rubbed off on Kyle. Yep, I think Kyle sees that B is so obsessed with it and he thinks he should do it too. So, yep Liz, you are welcome! Good luck with that one. (Actually, I am really sorry- you know that.)
Thank You MR. BLANKET!!! We, nor Burke, could do it without you!

Full Repair Surgery: December 10, 2009!

2009-11-15T12:35:00.000-08:00

Well, it's about time I update and document Burke's life and experience with Congenital Heart Disease (CHD). I haven't been as consistent about documenting Burke's life. To be honest, sometimes the task seems daunting. Yet, some days I feel like I just NEED to do it. So, here I am, I am just DOING it!

I am going to type something that we as a family have waiting Burke's whole life for.

BURKE IS SCHEDULED FOR HIS FULL REPAIR OF HIS HEART ON DECEMBER 10, 2009!

There- I said it. I just can't fathom it all the way yet. Though in one sense I can. Because I know what he can be. I know that IF they can successfully fix his heart so that it will be beating inside of him pretty much like a normal heart, than I know what this child is capable of. He is capable of running and playing and jumping and riding his bike just like any other 2 1/2 year old little boy. I know what he is capable of because he is a fighter and strong. And I am so grateful for this boy. I am so beyond grateful for him in my life. I just CANNOT even wait for December 10th. I cannot even wait. The wait is what will just test be beyond anything. Though I know I can do it, I just don't want to, you know what I mean? My little guy can get his heart fixed finally. His pulmonary arteries are big enough to enable him to get his full repair of his heart- so let's do this- NOW!!! That is what I want to scream and pledge to all the doctors!! But, still I have to wait. It is good for me to learn patience and endurance and I know that deep down inside. But deep down inside me is also a conflicting force. Impatience, anxiety and fear. I am impatient because I want my little guy to have this surgery because he can get off his oxygen. He can get off his feeding tube. He can eventually get off his meds. He can be free. And I will be freed from tubes and cords also. I am impatient and anxious and fearful because I don't want Burke to get sick between now and December 10, because that means that he won't get that full repair surgery on Dec. 10. He and I and our little family will have to wait until he recovers which could be a month. I am nervous that he will get sick. There I have typed what I feel anxious about. I have prayed and keep praying everyday (and will continue to pray- probably everyday- until Dec. 10 that he will not get sick. I want that more than more than anything right now in my life. I want him to be healthy and strong and ready for a new life with a fixed heart.

Burke has had all his past 3 open heart surgeries and other testing and procedures up at Primary Children's Med. Center. But they don't feel comfortable doing his full repair surgery without a Senior Surgeon on their staff. You see a terrible horrible awful thing happened almost a year ago now. Dr. John Hawkins- senior and cheif Cardiothoracic surgeon at PCMC was diagnosed with stage 3 Pancreatic Cancer. Last January or February of 2009 they gave him 3 months to live. Everyone who knew him or worked with him or had him work of them were devastated. I still can't believe it. He has helped and fixed so many kids hearts. He has helped on Burke's heart. He has been in on every surgery that Burke has had up until now. We have a special place in our heart for him and are grateful to have known him. He is actually still alive and is doing better than anyone has expected.

So, since he retired that surgeons at PCMC did not feel comfortable performing such a difficult surgery with out the experience of a more senior surgeon. We had to start checking out other places for a different surgeon. We knew that we wanted to go anywhere even if it meant us taking Burke all the way to the other side of the country if he were to get the BEST care possible. We didn't just want to settle for anywhere know how difficult this surgery could be. Primary's started sending Burke's medical information to Texas Children's Hospital and to Lucile Packard Children's Hospital at Stanford University. These two hospitals are up near the top in Cardiothoracic Surgery. We debated the two since we live in between the two places.

My decision was made when I was researching the different surgeons from these two named hospitals. I came to Dr. Hanley from Lucile Packard and I was overcome with emotion and couldn't contain myself. I cannot still to this day put into words what I felt, but I know the feeling I felt and I will never deny that. I still feel it now when I look at the hospital's website and see his picture. I knew that he was going to be the one to do Burke's full repair surgery. This was about 2 or three months ago. So, though I knew that I felt that we should go to this surgeon, we still had to get him to accept Burke's case. Dr. Hanley is a world renown surgeon. He is amazing and was a mentor and teacher to our surgeon Dr. Kouretas from Primary Childrens. That was also a deciding factor in going to with Dr. Hanley-because he had ties with Dr. Kouretas. It also helps that my parents still live where I grew up in Northern California so they can be of help and there for support during his surgery.

Burke had another Heart Catheter awhile back here at Phoenix Children's hospital and all looked promising in his heart to keep going forward with getting him to his full repair. We sent his test results of the Cath. to Dr. Hanley and about two or three weeks later we heard from our Cardiologist- Dr. Graziano- of the good news. Dr. Hanley accepted Burke as a patient! We could not believe it! What we had hoped and prayed for for so long had come to pass.

There have been so many miracles that Heavenly Father has graciously blessed us with. Though I know we don't deserve it most of the time, I know Burke deserves it for he is perfect. And I know Heavenly Father is watching over and protecting him. I know that He watches over us and is mindful of me and my little family. We have really been through it over the past two plus years. We have had the highest of the highs and been through the lowest of the lows. And I know Heavenly Father has watched over us every step of the way. There are days where I think that it can't get any worse. Let's be honest, everyone has those days and you know what I will be the first to tell you that I have had plenty of those down days. And sometimes it even gets worse than those worse days. But you know what, there are better days. And then there are great amazing and perfect days where I just want to sing on top of a mountain just like Maria from Sound of Music.

I think what helps me to have better days than worse days is to be faithful. Now this hasn't come easily for me. I have a hard time doing the small and simple things that are- over time the biggest and best thing for our spiritual grow. They are necessary. They are vital. They are the Sunday-school-lesson-answers that we- I tend to overlook their importance. Pray. Read your Scriptures. Be faithful. Be obedient. I have become complacent in the area of ready scriptures and being obedient. Because through obedience comes faithfulness. And with our faith we can move mountains. With our faithfulness we can be born of God. With our faithfulness we can heal hearts. With our faithfulness we can believe and know that Burke's heart can be fixed, healed and become whole. This thought more than anything yet in my life makes me want to be strictly obedient. And at this moment I know exactly why Heavenly Father has us go through the experiences and challenges we go through. For our spiritual growth. To draw closer to Him. To repent of how we are naturally and to change actually change to become more like Him.

Now, I say these things like I have done a great job every singe day through this trial I am going through- no. I have not, quite the opposite actually. It's been rough. But I know that Heavenly Father has blessed me with quite a tender mercy just recently. When we finally had a date for Burke's surgery was the tender mercy from the Lord. He showed His grace and mercy towards me that day because He knew that I needed to see the light at the end of the tunnel. Knowing that Burke will have his full repair gives me so much hope. It makes we weep at night knowing that there is a possibility that Burke can become normal. It is making me emotional right now. When the end is in sight there is hope. When it is within reach there is the hope I need to get through these trying times. Heavenly Father is helping me through this trail because He is trying to teach me that I need Him. I have learned that. I know that for a fact now. I have always believed that, but after you go through something that tries you beyond what you think you can handle, you know that we NEED HIM. I NEED HIM. And I will always need Him. For He is our Maker and loves us so much that He will show us He is here for us when we are ready to NEED HIM.

I can't put into words how grateful we are for Dr. Hanley for accepting Burke as a patient. I can't put into words how excited I am for Dec. 10th. We had a phone conversation on November 12 with Dr. Hanley. He exceeded our expectations ten fold. He was confident in fixing Burke's heart. He gave us hope and reassurance. He told us that though this surgery might be Burke's most complex surgery, his recovery might be the quickest because his heart will be fixed. We could only be in the hospital for 10 days up to 2 weeks! I just can't put my mind around it yet! We are just beyond excited and anxious and SOOO READY for it to be December 10th I can't even stand it.

We will keep you updated about how Burke is doing. I want to document how he has been lately for my records and for his. But, until then, we wanted to share the most amazing news about Burke's upcoming surgery! Have I mentioned it will be on DECEMBER 10th!!!! Oh, I did, didn't I?

Halloween 2009

2009-11-01T22:30:00.000-08:00

Eat your heart out! Liz with Redbucket Photography took the kids out last week for a fun filled photo shoot for Halloween!! Can you say Adorable!! I think they turned out perfect. Emma was a ham for some of them and I love it- she actually is starting to pose for pictures. Emma is wearing Liz's ballet costume of minnie mouse from when she was little. So stinking cute- thanks Liz for letting her wear it!

And here's the poser Burke. I just LOVE this one! He did this all by himself. He was in a weird mood that day, and we didn't get a ton of him smiling perfect, but we got some cute shots.

This one Burke is listening to his heart. PRICELESS! He loves stethoscopes.

Here's the best group shot. Pretty dang cute it you ask me.

On saturday it was ASU's homecoming and they had a big Halloween school parade and so we brought the kids to enjoy the day. It was a pretty day and we had fun starting off the Halloween festivities early in the day. Emma was mad though that we didn't fill up her bag. I kept having to remind her that tonight we would trick or treat and get a TON of candy. This fun balloon making clown made Emma Minni Mouse ears. It was her first time ever making minni mouse ears, I think it turned out cute! We lost her ears to her costume during the week so before we went trick or treating I made her some new ones. I felt so proud of myself. I made part of my child's halloween costume. I totally felt like a real mom. Because isn't that what a real mom does, she makes halloween costumes, or make alterations on the costumes. She is wearing her homemade ears here! Love it! Emma was adorable. I kept on saying that all night long as she was running up to each lit up house. They both got a ton of candy.

This is us while we were trick or treating. It was so fun, the kids were having a ball! I even dressed up. I usually hate figuring out a costume, but it was easy this year because I had everything for a cowboy. I think this might be my staple costume from now on- sweet!!

Liz and I made them each trick o treating bags to carry. Burke's has a Red Cross symbol with Dr. Burke Johnson, MD on it. Emma's has a big E for the obvious, and Kyle's has Micky Mouse ears on it with his name on it to match his name on his hat. I have done quite a few sewing projects since being down here in AZ because I have access to Liz's sewing machine from my mom. So, this was one of the many projects I have done and I think these bags turned out great!

Alright, Already!

2009-11-01T21:36:00.000-08:00

Alright, brace yourselves. This is probably my all time favorite picture of the Burke! PRICELESS!

This kid was SO proud of his tower!! I love it. He is adorable and he has come alive lately. There is no doubt this kid is 2 years old. He is getting more and more strong willed, but go figure he is related to Emma-Queen Strong Willed herself!

The Queen!I had to get an everyday "here's what we do during the day picture". The kids eating lunch like usual, which they do everyday. There you go. MOVIE Night!! We watched Marley and ME!! It was so cute and funny and still to this day three weeks later- the kids are still asking to watch Marley. They loved it. (My feet look huge sticking out of Burke's blanket, I look huge in that picture- awkward!)I gave Kyle a hair cut the other day. He sat so still for about a half hour. I couldn't believe it, my kids never do that. Okay, I can believe it, because my kids are SO much different than Kyle, he is SO mellow!I just loved this cute picture of Kyle. He is adorable. Can't figure out what E is doing though.

And no, that is NOT a pregnancy test- it is a thermometer. Serious. The kids are obsessed with taking their temperature, and now a days Emma likes to pose in pictures with anything that is cheesie- like a random thermometer!! I just thought it was actually a good picture of us.

Ryan and Liz were given this awesome scooter! When Ryan fixed it he took the kids around the block on it- it was awesome!! It goes like .5 m.p.h. It was great fun!

The pregnant woman (aka Liz) even got on for a ride!! That scooter was awesome.

This is a classic position for the kids during any given day-- starring straight into the tube! Thank you Rachel from "Baby Signing Time" you are our favorite babysitter!

Burke's 2nd Birthday!!

2009-09-18T11:04:00.000-07:00

We enjoyed Burke's 2nd Birthday in August! This is a very classic picture of what happens when it is NOT Emma's Birthday. She thinks that the person whose birthday it is, can have NO chance to blow out the cake until after the song the designated time to officially blow out the candles! This likewise happened on Burke's first birthday, when Emma basically pushed Burke out of the way so she could blow out the candle not even allowing B the chance to do it. Classic. I know this looks very unsafe-oxygen on baby who is very, very close to an open flame. Don't worry he didn't explode, just so you know. Maybe that explains the funny expression on his face- he was probably feeling a little tingle in his nose- "okay a little too close to open flame guys!" Oh, and I know what you are thinking- who made that LAME cake. Yes, I will admit I had to give in a buy a store made store bought cake. Yes, I am officially a LAME-O mom. I felt like such a failure throughout the whole "Happy Birthday" song staring into the awful store bought LAME-O cake. I know you can say it, I have admitted my wrongs! (It was likewise smashed in the car as it slid across the seat on the way home from the store. YEP- LAME)!!!B playing with his trucks from Aunt Marth. He loved them, thank you!What ends a long fun birthday better than to cuddle on the recliner chair with your favorite blanket? This is a very classic picture of Burke sucking his two middle fingers on his right hand while holding and smelling the "taggie" from his FAVORITE blanket his cousins and grandma made. him. I have been meaning to document this very loved "lovie", but I haven't as of yet. Did I mention he LOVES that thing. We do not go anywhere with out it and it has saved us many a times in the hospital when nothing else would calm him.

I can't believe that it has been two years since this little man was born. We are so happy and feel so blessed that he has stayed with us for as long as he has. He has brought a sweet spirit into our home from the day he was born. He is the sweetest most personable little guy we know who makes everyone fall in love with him the second they see him. We are grateful for Heavenly Father above who has entrusted us with His sweet child. We are inspired and in awe of what this little boy has to go through and what he adapts to. I know that He is being watched over and protected daily from our Heavenly Father. We know for certain that we were to go through this trial in our lives to help us become better people and to bring us closer to the Lord. He has been so merciful and patient with us through this whole experience. We are forever grateful for all He has done for us in so many many ways. We hope and pray daily that Burke will be able to stay with us for a good long time, but we understand Burke has a specific purpose here on earth (as we all do) and we are trying daily to line our will with the Lord's will. I am so grateful that He is in charge and that we don't have to figure everything out on our own.

We love you Burke with all of our hearts and we are so grateful for you and what you have brought to our family. Happy Birthday Buddy!!!

Back in the Saddle Again

2009-09-17T21:32:00.001-07:00

Okay, I'm back. I know you probably aren't checking our blog anymore because it has been over a month since our last post, but here I am starting again, yet I don't know where to begin. A TON has happened in the past month. We basically have been running around with out heads cut off. Our experience moving here to Arizona has been nothing short of ridiculous. No joke. Moving two states away is hard enough, but moving two states away with two kids and one who needs 24-hour medical care and a husband who is starting school is one difficult task. We have had to change medical insurances, medical supply companies twice now and figuring out a new pediatrician, a cardiologist, a GI dr all the while researching pediatric heart surgeons to find a great one who can evenutally do Burke's up coming surgery. This move has been a NIGHTMARE!!! But, we are here, and one month later I can say I am through the worst of it and only have two unopened boxes to go through in the house (there are more in the garage, but I can easily leave that alone and shut the door and not stress over that as much as I do the inside of the house).

Tyler is really liking school and the program at ASU. The program has gotten more intense with a lot of reading and studying. He is really enjoying himself though. He has been constantly searching for a used car for him to drive to school since we left our good ol truck in Utah to sell. I know how sad is that- we have loved "Rufus" and will miss it dearly. Tyler thought he would drive that truck into the ground. That was the truck Ty had when we were dating and so with it comes fond memories and we will miss it so much!! Okay, enough sappy talk about a TRUCK for goodness sakes! Let me just wipe my tears for a second here, okay, I'm better. Moral of the story is that he found a car tonight!!! Yippee!!!! We are thrilled. No more mooching off Liz and Ryan for their car.

We are glad to be here in Arizona but I aint gonna lie- we are a little homesick for Idaho and Utah for that matter though I never thought I would include Utah, but we do miss it. We had a great summer there in Orem living so close to "Marcia" or "Marth" (as Burke says) which ever one you please right Martha! The kids frequently ask to call Martha or grandma or grandpa or want to go to grandma Johnson's house. I think it is that saddest thing when Burke asks, "go Grandma's house, mommy?" and I have to tell him that we live way far away from her house. Burke has been the phone talker lately. He wants to talk to EVERYONE!!! It is so fun.

We likewise miss the weather changes. I feel my body wanting and yearning for the fall weather to come. For the smells and the colors that my senses are expecting. I guess we do have a slight change in season here from hot summer to slightly less hot summer. It is kind of weird that my body has already adjusted to the heat and I can tell when it is extremely hot vs. just hot. It has actually cooled off a little lately, I think today was only around 100 degrees. But really it hasn't been too bad, though I do complain often and I bet Liz is so sick of my comments about the heat. Sorry Liz, really.

Okay, enough talking here are some photos of what we have done this past month. Enjoy!!

Here we are at the duck pond in Provo, Utah before leaving for Arizona. The kids LOVED it!

Something was obviously HILARIOUS!! I love it.

Priceless Emma is telling Burke to be quiet so they can catch a duck to hold.While still in Utah Hilary with Abby and baby Hannah came to visit to see us one last time before we moved to Arizona. We had a blast and my kids still talk about when Abby and baby Hannah came to visit. Thanks for coming Hil it was so fun- crazy and busy but FUN!! Burke and Abby are only 5 weeks apart.

This has got to be the cutest most sweetest pictures. I love it for many reasons. This is Diego, Burke's cousin who is about 9. He was playing over at Grandma's when we were there before moving down to Arizona. He along with Rafael and a few of the other cousins were playing outside in the court yard. I was trying to either pack or do laundry or something inside the house and I couldn't have Burke go outside without me wheeling his oxygen around. Burke wanted so badly to go outside with his cousins to play. So, I opened the door and Diego saw that Burke wanted to go out so bad so he came over and grabbed the oxygen tank and started to wheel it outside so Burke could come play. Priceless. I couldn't believe he would do that, being so young himself, but he just did it without any hesitation. I love that he would think of Burke and do that for him. Burke's cousins love him so much and I am grateful for their love for him. So, thank you Diego, I will never forget that moment.

These pictures are from a little family get together at grandma's house in Idaho. You can tell they are for sure NOT Arizona with how green the grass is. We had a great time that night and miss all our family there! Burke for sure misses the 4 wheeler, his one true love. Here he is sitting on the 4 wheeler talking with "Favorite".

Kristin Tyler's sister, has taught Burke that her name is "Favorite". It is hilarious, because he actually calls her that. Kristin, can you see your glasses and hair in this picture? These are so cute I need to email the rest to you. Here are most of the adults gathered on the back patio at Ty's parents house. This is another very classic picture of the Johnson clan and I LOVE it!! I miss nights like this where we just sit around all evening talking with each other while the kids go where ever they want and do whatever they please. Thanks everyone for coming, we had a blast and it was a great way to say good-bye!In the moving truck with Dad in Arizona!! I will update the pictures of our first few weeks in Arizona another night. But until then I am going to bed. This has been a daunting task and I finally got myself to update this blog!
Stay tuned for .....Our trip to Disney Land.... Burke's birthday... and more!!!

August (almost)

2009-07-31T10:34:00.000-07:00

I can't believe that it is almost August. August seemed so far away just a few months ago. August to us, means packing up and moving from Utah back to Idaho for a short few days, then going through our storage in Idaho and deciding what to take to Arizona and what to leave in storage for the next 9 months. Then we have to pack the moving truck and FINALLY move our stuff and our little family down to Arizona!! August means a party to celebrate Burke's 2nd birthday and Tyler's hard work in getting into the MRED (Master's in Real Estate Development) program at ASU! August means a party for my sister Liz possibly at Disney Land- Hilary you are invited too- it would be sooo much fun to have you there!! August means hot hot weather-weather that we are not totally prepared for. August means living right next door to Liz (literally right next door and did I mention- PARTY?)!!!

What a fun fall and winter we are going to have and we are so excited and anxious to FINALLY move to the good ol Sun state of ARIZONA!! We will sure miss being so close to all Ty's family and friends in Idaho, and Martha and Jenny and the other family and friends we have recently met down in Utah. Needless to say, we are excited for this new adventure and where it will take us! BRING ON AUGUST!!!

Cardiac MRI

2009-07-30T12:14:00.000-07:00

Well, I am writing from the recovery room at Primary's! Burkie is sound asleep (from sedation) in recovery from a sedated cardiac MRI he just had. He is usually awake by now after the MRI, but this time is quite different and quite nice I might add. An asleep sedated baby is much nicer than an awake yet sedated baby!

I guess I better hurry up because he is starting to move a little. The doctor's report was good and that his arteries have seemed to grow from the last heart catheter. GREAT NEWS!! They will know more tomorrow when the complete MRI test results come back- they reconstruct the images from the heart to represent his actual heart. So, tomorrow we will know a more complete evaluation of how the testing went so stay tuned. But overall we and the doctors feel happy with the results!

We are now just going to wait. The doctors feel that nothing too urgent needs to happen with Burke and anytime soon (in regards to a surgery), so the plan as of right now is to wait. When we get down to Arizona we will get checked out by the Cardiologists there and just wait for when the time is right to fully fix his heart!

Seriously this kid is precious. Here he is the other day water color and notice the feeding tube again as well! Farewell, until next time when Burke will return to his happy self again!

What We've Been up to Lately!

2009-05-31T21:24:00.000-07:00

This past month of May has been crazy busy filled with a lot of work, fun, play, and tired little kids. First, we moved at the beginning of the month. We are now down in Utah, but technically still have our residence in Idaho. Ty accepted a job down here and we will be here until we leave for Arizona in the fall. Tyler works for his sister Martha who works for the Ashton Family. Martha deals with and manages all of the outside work for all of their properties here in Utah. Tyler is really enjoying working with Martha and working outside again.

Here is Emma and Burke getting ready to make the trip to Utah. Burke is out already and Emma is holding the good-bye present from Molly her cousin. Molly- she loves the notebook and thank you so much for thinking of her, she uses it nearly everyday!

We have been playing with Aunt Martha a lot. We see her daily and the kids are loving spending time with her. This is a very classic picture and captures Emma to a T. She loves taking pictures especially with people's phones. She can figure out anyone's cameras on their phone.This is also another picture that depicts Emma in her true nature- she loves being the center of attention!! Front and center is the way it goes for her- okay, so she is a lot like the way her mom was when she was younger, and if she keeps that up, Tyler and I are in for it big time!!Here's the Burke telling Martha all about something that is fascinating him. I love it when he describes things that he can't exactly tell us everything in normal words. Thank you Martha for loving our kids and playing with them so much! We are so glad we are able to spend this summer with you and live so close to you! We love it!

I have so much more to post about the rest of the month, but there is a start. We are doing well and miss everyone back in Boise! We will back and forth throughout the summer so we will be sure and catch up with everyone while we are there! Until next time!

Red Bucket Photography

2009-05-28T11:08:00.000-07:00

Anyone in need of family pictures? It is the perfect time of year to have your family pictures taken in this beautiful spring weather! My sister Liz is a photographer who owns her own company Red Bucket Photography and she is coming into town and will be available to take your families' pictures or any other photography needs. She does everything from newborns to toddlers to Senior Portraits, to families, weddings and all that goes along with that and much much more. She can take your companies pictures for your website. The possibilities are endless! She does everything. She is from Mesa, AZ but is coming up to Utah the second week in June. She is awesome and inexpensive and she would love to capture your memories from behind her lens. Please check her out, you won't be disappointed!! Here is her traveling ad, but if you contact her with other questions or wishes she would love to work out something with you!
She has taken our family pictures many times and let me be the first to tell you, our family is so incredibly hard to photo but she did awesome. You can check out her work HERE when she took my kids' photos back in March, and I absolutely LOVE them.

He Passed!

2009-05-16T09:48:00.000-07:00

Burke passed his swallow study which means that he is not aspirating liquids any more!!!! YIPPEE!!! I could not have asked for a better gift and I know that Heavenly Father had a huge hand in seeing that that blessing came to pass. We are so thrilled. So, this means that Burke can finally drink from a normal cup, sippy cup, and through a straw again!! He has been drinking non stop since yesterday! We are so excited for Burke to feel like a normal kid again. The only bad thing is that he still has his feeding tube in. Yeah, I know!! The doctors wanted to make sure that he would still get enough liquid during the day, so until he can prove himself the tube stays. I just plan on not using it and feeding him like a regular kid, unless he doesn't eat or drink enough during the day. So, tube is in there for now-which I am okay with-for now!

We got home yesterday about 4:30pm and we were exhausted!! Burke went down at about 7pm and he only woke up once (which I guess he was up for awhile according to our neighbor who saw Tyler and Burke out on a walk at about 10:30pm). I was out at about 7:30pm so I never knew about this "midnight walk" that was taken. All I knew was that Burke ended up in our bed (I guess after the walk) and I woke up about 1:30 am to put him back in his crib. Ty has been out working in the yard all morning, so I guess I better get the whole scoop on what really went on last night. I am just glad I was asleep through it all (sorry Ty)! Anyways, we woke up this morning about 9am and Burke has been his regular active self since. I am so glad this recovery has gone so well- it was definitely a breeze compared with open heart surgery!

The doctors put together a plan as to what will happen in the next few months. They want to see Burke back in about two months to see if the left branches of his pulmonary artery have stayed open and have grown since yesterday. They will do non-evasive testing then such as an MRI, a CT scan and a profusion test for his lungs. They will then gather all the results from all the tests over the past few months and in conference with all the doctors put their heads together and come up with the best surgery plan they can. From there, if those arteries are big enough, then they will schedule his full repair surgery (The Rastelli procedure) a couple of weeks later. So, in short, if his LPA's grow, then in about 3 months Burke will have his full repair done on his heart and be a new man!!! Isn't that crazy. We have waited for this for a long time. It is obviously not a done deal yet, but we are so hopeful. Thanks for all your comments and prayers offered in Burke's behalf they are so greatly appreciated and we know they have helped a ton!

A Success!

2009-05-15T06:11:00.000-07:00

I'm not very creative with titles these days, so I just put it out there- a success, the heart cath, overall was a success! They found that his right branches of his pulmonary artery have grown since the last heart cath in February which is a huge blessing. But the left side has many narrowings in the branches which is where they spent a lot of their time. They ballooned open many of the branches successfully. They also inserted a stent which is basically like chicken wire on a way smaller scale, to help reinforce the artery. Hopefully with that in place the left branches will start to grow because I believe the stent is what helped the right finally grow, but who knows exactly. They also successfully ballooned open his upper two chambers of his heart to allow for more blood flow. With where his arteries are placed, the wrong blood is going to the wrong place. With this opening, they are hoping to have the blood mix even more causing at least some of the correct blood to go to the correct place. Kind of confusing, I know- sorry.

Burke has done exceptionally well this time around post- heart cath. It was a breeze compared with the one in February, and Jan you could attest to that for sure. She was there helping after that heart cath and it was strenuous for sure. After the heart cath we have to keep his leg straight for 6 hours. Do you know how hard that is for a child who is so active and on top of just coming out of anesthesia? Well, let's just say incredibly hard for our little Burke who is also VERY independent! But this time around he slept really well after the procedure and basically slept all evening, woke up once for a couple of minutes, then went right back to sleep and slept until 6 am this morning!! What a stark difference from last go around. I slept in his room last night so I could be there with him.

He has already gotten the routine chest x-ray this morning, and will have an ECHO done sometime this morning also. We are hoping to get a swallow study done today which will determine if they can take out the feeding tube or not!! Wouldn't that just be the BEST Birthday present I could ask for?!! Seriously, that would be a huge blessing from the Lord if we could not have that tube any longer. So, we will be praying hard today and see what the test shows!

I have taken some pictures and will post those as soon as I can. Thanks for all your love and support. We will update more later and hopefully we will be out of here before too long.

Another Heart Catheter

2009-05-14T13:37:00.000-07:00

Well, we are here at Primary's again for another heart catheter, the second one for this year. He has been in the cath lab for about an hour now and will be in there for about two more. They are going to balloon open his pulmonary arteries more and maybe put some stents in to help reinforce the artery. They are also going to balloon the wall between the upper two chambers of the heart. This was open, in other words, he had a whole in the heart in that place in his heart when he was first born. Over time it closed up and last June they ballooned it open to help with circulation and flow in his heart and to help release some pressure build up. They think that it has closed up again. They are planning on opening it again in hopes that doing that alone with help his oxygen levels and buy him more time to get his arteries to grow bigger in preparation for the full repair.

We will be here overnight and hopefully be able to go home tomorrow sometime. We are all doing well and so is Burke. He has been so happy and full of life lately. We are so grateful for him and all he teaches us on a daily basis. We will keep you posted.

ASU here we come!!!

2009-04-05T11:41:00.000-07:00

On Wednesday, April 1, 2009 we received the most exciting news we have heard in a long time! Tyler got accepted into the Masters of Real Estate Development program at Arizona State University!!! And this is NO April fools! He applied for the program back in February and we have been on pins and needles since waiting for the news. If you look closely, Burke is sporting an ASU sweatshirt, and his face completely and utterly describes our excitement we are feeling right now!! CONGRATS DADDY, WE LOVE YOU!!

We learned about this program earlier this year and read that there was a chance he could get accepted without having to take the GMAT- a grueling test that he dreaded to take. The exemption was that if he had enough work related experience, which if you know Tyler and his family being in the development business, he had PLENTY of work related experience. He spent many hours putting together his application and felt proud of what he turned in as was I. There are only 35 people who get accepted with about 135 who apply. With those odds, we feel so blessed and are so grateful to get accepted. To have some guidance in our lives during these hard times is such a relief. And I am so proud of Tyler as he has worked so hard and is so excited to start anew down in the sunny state of Arizona!! We are grateful for those who helped write letters of recommendations and with editing and revising essays and resumes! THANK YOU, you know who are!

New Student Orientation starts on August 20 so we will probably make the move down there at the beginning of August. My sister Liz lives down there and we can't wait to live near each other and spend this next year together! PARTY in AZ!!

Pictures Anyone?

2009-03-29T17:08:00.000-07:00

Hey all! I am currently in sunnny Arizona visiting my sister Liz and her cute family. We are soaking up the sun before we have to go back to the cold weather. We are making the 14 -hour drive(more like 24 with 3 kids in tow) home starting this Wednesday and making a long stop in Utah to see friends and family. As some of you know, my sister is a photographer. She has some openings for photo shoots and would love to take your pictures during this Easter season. Here's her schedule:

SLC/ Provo - Wednesday April 1- Saturday April 4
Boise- Monday April 6- Wednesday April 8

Check out her cute blog and email her to schedule an appointment!
http://www.redbucketphoto.blogspot.com

Recently

2009-02-27T20:55:00.000-08:00

We have started a bean jar with Emma to help with her behavior and trying to encourage her to be helpful and obedient. She lost interest in it a couple of days ago because the end prize (a dance party -her choice) seemed too far away especially for three year old. So, I decided have smaller goals and have her receive smaller rewards for her efforts. She reached the first line I drew on the jar and her smaller prize was ice-cream. The other night we went out as a family to the store and got some ice-cream. Here is the happy child with her ice-cream and her jar. I am so proud of her, she is a great little girl, and if I keep being patient with her she might actually like doing things I ask her and MAYBE doing things when I don't ask her, MAYBE!!! Thanks Becca for the bean jar idea, it is definitely helping.

Today we had yet another appointment. We had two yesterday and the most painful of all today- 18 mo. immunizations! He literally screamed bloody murder when the first shot hit, then he turned blue, then he screamed and cried more, and by the fourth shot, he was shaking. I have never seen a child shake before like that. It was awful and I was so glad to have them over. Too bad he has to have the synagis shot for RSV in 28 days. Not fun. But, I thought he wasn't going to hurt too much from the shots because he took a great 2 1/2 hour nap today and was fine when he woke up. Then a little while later he became really fussy and in pain when I would pick him up. This boy just really needed something to remedy the pain and discomfort of four awful shots. Here was our solution. We all think it did the trick!Everyone needs a bath to help soothe aches and pains. Here is B showing off his cute band aids.

Also, would you please admire his extra weight he is carrying around with him. He is now weighing 24 lbs. and is in the 30% because of it. He has never been that high on the charts. The feeding tube is for sure doing it's job, amongst other jobs that we all didn't anticipate! E is singing (actually SCREAMING) with excitement that she and B are finally in the bath. Maybe I ought to get them in there more often.Splashing is their latest thing to do. They just laugh and laugh. And it is so fun to hear B imitate Emma. If she laughs he will and if she splashes he will. His voice has pretty much come back all the way, but his laugh, he has a HUGE smokers laugh, and I just can't help but laugh at it myself. Think of the irony of a baby, yes a baby who is on oxygen, who has a smoker's laugh, now one might wonder why he is really having these heart surgeries now wouldn't you? That's really bad of me and I am TOTALLY kidding, but you really have to hear the smoker laugh, it is pretty cute!

The Rest of the story:Heart Catheter Story

2009-02-20T19:35:00.001-08:00

Burke got discharged from Primary's Wednesday around noon and we headed home immediately. Burke was really tired from the heart catheter and not getting a lot of sleep in the hospital. I was likewise tired, because I slept on a fold out chair in the tiny little room at the hospital with Burke. Jan, my mother in law for those who don't know, traveled with Burke and I and she was likewise tired from the long drive and also staying at the hospital with us all day long. Burke fell asleep in Layton area and he slept almost to Mountain Home! It was crazy- we only made one stop in Mountain Home! Burke traveled well the rest of the way home and was anxious to see Emma and daddy.

Burke is doing well and is pretty much recovered from the procedure. This heart cath. was hopefully going to help with Burke's oxygen levels and his overall quality of life. But, we are noticing he is still huffing and puffing a ton, like he did before the cath. and he also gets tired really quickly. The tiredness could still be due to him recovering from the cath, but we were hoping there would've been a more noticable difference. We are still hopeful that over time the arteries will grow and his oxygen levels will go up in order to sustain his life as he grows. Needless to say we still have tank. And we probably will have tank for awhile to come. It's Burke buddy and that is no joke, he walks over to it and just hangs out with it. He is the sweetest little boy.

liquids again and we don't have to thicken all that he eats. We will be getting a swallow study done to make sure that he is not aspirating the liquids but we are so excited for Burke to drink again. He had water the other day for the first time in almost 2 months!! He did great. FeedingI guess I never mentioned the other tests that they did the morning after the cath. He had a comprehensive ECHO done and he did awesome. He was expected to lay on the table while the tech did an ultrasound on his chest. He fell asleep within 10 min. and was asleep for about an hour. He was a champ and the test looked great. He also had a scope done to check his vocal chords and the right vocal chord is vibrating again!! That was the greatest news I had heard in a long time!! They must have just stretched the nerve in his neck when they had to put him on ECMO in December. Since the vocal chord is moving now, we can try to get him to drink thin Burke is still a huge ordeal and he basically doesn't eat anything by mouth anymore because he is afraid of it going down the wrong tube and hurting him which I don't blame him at all. We are still working with our speech therapist Sharon which has helped a lot. Here are some pictures of our little trip.

We stayed with Martha (Burke's aunt) down in Orem and this is Burke when we first arrived at her house- he immediately found the piano! Thank you so much Marth for letting us crash at your place, it was great to see you like always and I think you have to move up to Idaho because that massage you gave me was awesome! She pulled out her massage table (she is a massage therapist amongst many other things) and worked on my awful back. I seriously haven't felt that relaxed in a long time. Here's B in the same day surgery waiting room at Primary's. He has no clue what is going to happen. I just hate that.

These next few are in the room where he gets checked out by the nurse before the cath. I love pictures of him in his hospital jammas. We had to wait awhile in there, but B was a trooper. And I was so glad that Jan came down with me, she was a HUGE help and played with B when he was getting antsy. B loves gwamma and we are grateful for all her help she gives us! Here is a classic Burke picture, him sucking on his fingers while holding and smelling his blanket. I love it because it gives him so much comfort through all he has to go through and deal with. So a HUGE thank you to B's girl cousins and gwamma for making such a perfect lovie for Burke. I am sure he appreciates it too!

Heart Catheter

2009-02-17T16:32:00.001-08:00

We are at Primary's right now for another heart catheter. Burke did great during the 4 hour long procedure. The doctor was able to successfully balloon open the left branches of his pulmonary artery. They haven't grown since the last heart surgery and the last heart catheter so this ballooning is supposed to help it grow. They are very pleased with how all the ballooning went. Now if his artery could grow, Burke could possibly get off the oxygen over the next little while. Though, because of his complex anatomy, his oxygen levels will not be perfect because the wrong blood is going into the wrong artery. Once they do the final repair of his heart (which is a major, major complex surgery) then his oxygen levels could be near normal.

The right branches of his pulmonary artery has grown since the last ballooning which is a great sign. They had to put a metal stint in on the right branch of the artery to help reinforce it. That will most likely stay in for the rest of his life, but could be taken out if needs be.

We are pleased with the results from what they saw in Burke's heart and are hopeful that what Dr. Gray did today will help Burke be able to sustain life right now better than he currently is. We are anxious to have the artery grow and see the change for the better in Burke's life.

We are staying in the hospital over night because they want to monitor him more closely, and hopefully be discharged in the morning. ENT will come by in the morning before we leave and put a scope down Burke's nose to check if his vocal chord has improved. We are hopeful that is has because his voice is a ton better than it was when we first got home from his December surgery.

We will keep you posted. Burke is doing well and sleeping right now which is a great thing, considering he has to lay flat in the crib and has to keep his leg still to keep it from bleeding too much. Yeah, we will have a fun night tonight trying to successfully accomplish that feat!

The Johnson Juggle: part 2

2009-02-08T20:43:00.000-08:00

Next up is Burke! He has been so active lately. Something in him came alive recently and we have just loved it! A quick up date on Burke is that he is over all doing well. We went to the dr. last week and he weighs a whopping 23 lbs. 2 oz!! Can you believe that!? I sure can't because just after his last surgery he got down to probably 16 lbs. He has grown so much and we attribute that to his wonderful feeding tube. I could do a whole weeks worth of blog posts about that feeding tube and could call it all sorts of awful names under the sun. But I will refrain. It is such a blessing to have that feeding tube in for Burke's health. I completly agree with why he has to have it, but it is a royal pain in the *#$!! Yep, there you go, I couldn't refrain. I will get back to the feeding tube later, but back to his update.

Burke has been sick for the past three weeks and this week he is finally back to his normal self. We had to cancel his heart cath and have rescheduled it for February 17. I will be taking him down on the 16th and the cath is early on the 17th. They will perform the cath to check his arteries to see if they have grown at all, and then proceed to balloon open his left branch of his pulmonary artery in hopes that by doing so those arteries will begin to grow and expand more on their own so he could possibly get off the oxygen and buy us more time before he will need another surgery. We are hoping for a few months or so for them to grow after which they will be able to perform the full repair on his heart. If those arteries don't grow, or don't grow big enough, they might do another heart cath to balloon open the arteries again, or even do another in between surgery to buy him more time for his arteries to grow. The goal is to get his pulmonary arteries big enough for his heart to handle the full repair where it would require of his heart to pump like a normal heart. They cannot fix what else is wrong with his heart until those pulmonary arteries grow big enough.

Burke has been growing great, but he is still on the oxygen and still huffing and puffing a ton even though he has more energy than any kid I know. He just goes and goes, and I have to stop him every once in awhile and hold him so that he doesn't over do it. The reason he is huffing and puffing so much now, is that as he gets older and bigger his heart cannot handle what his body requires of it, even though he is on the oxygen. That is why they need to do the heart cath soon and hopefully get his full repair soon too.

So, here is what B has been up to lately:
So these two pictures were taken awhile ago when he was eating. Since he has gotten sick he basically didn't take anything by mouth. Which I am worried about. So, he still has a limited diet because he aspirates thin liquids. He also cannot control and properly chew some foods because of his tongue. It is getting better, but we have taken a couple steps back because of his cold he had. I really understand more of what B is going through though. I also got a cold recently and I couldn't breathe or smell or taste my food or anything. I was sitting down for dinner one night and knew that I should be hungry. I had a huge plate of dinner in front of me and my brain said that I was hungry but my stomach didn't. And I could barely eat because I had to stop every so often to breathe. I bet that is the way B is all the time. He can barely breathe sometimes and his body doesn't even register that he is hungry because he is trying to focus on a more vital thing as breathing. I have learned from our speech therapist that adult who have respiratory diseases and such, know that they need to eat, but they physically cannot bring them selves to doing it because they can't breathe, or don't get enough air to allow them to breathe and eat at the same time. I have never really known how B felt until I had that cold. I feel so bad and try and not get frustrated while I feed him and he doesn't eat. I just worry that after his heart gets fixed that he won't ever eat normal again, or that he will have his feeding tube in for ever. I know that his feeding tube is going to be in for awhile, and I am still coming to grips with that fact because it is so difficult to deal with and to not know that there is an end in sight is hard. If I knew that he will get off of it, then it would be easier, but not knowing when and if he will get off of it is hard to handle. But, overall it is worth it, because he is getting big and growing and obviously needs it which makes me one happy mama.

Here is B in the bath and guess what time it is? Oh, it was 3am. Yep that is A.M. alright! And yes that is me and Ty is up to because he took the picture. Thankfully, Emma slept through B's bath party! One, night like most every night these days, B's alarm on his feeding pump went off. It must have been kinked or something. I walk out in the hall and smell Pedia Sure. I didn't think much of it, until I get in his room and was overwhelmed by the smell and look down to see him and his whole bed and bedding drenched in the vanilla flavored stuff. It was unbelieveable to think that most of his feeding went on him or around him not inside of him. I start yelling and gasping and growning and Ty comes to see the damage. We could not believe it. What happened was that the plug on the end of his feeding tube where we hook up his feeding pump gets loose. Over time it doesn't plug up as well and unplugs and drains everything everywhere. There are two ports and sometimes it is the one that is hooked to the feeding tube, but other times it is the port on the side so as the food goes in, it comes right back out because the side popped open. Do you know how frustrating it is? It is unreal how frustrating it is. It came apart in Walmart and leaked out all over the floor. It is come apart many times while B is in his car seat or stroller and he just sits in the formula and sometimes it is even already curded formula that comes out. It is basically throw up with out B actually throwing up, good for B but not for me. It has come apart all over his bed many times and also all over my very nice and very expensive glider in B's room. We finally got smart and now put tape over both ports, though the tape sometimes comes off too. So, just two nights ago, I went in to check on B and it happened again. It was all over his bed, a lot of it too. I thought it didn't get on B, oh, but it did. I had to take him out of his bed and change his whole bedding and then gently wake him up and change his whole outfit and do you know how hard it is to change a child who has two tubes. It takes me forever to change him and to figure out exactly which clothes will work the best so we can have access to the feeding tube and also so the tubes don't get tangled and pull on his face and ears.Here is him laying on the changing pad on the ground while I was changing his bedding. He didn't even move when I took him out of his bed he was so tired. You can see his leg was covered in PediaSure. The pink think by his hip is the end of the feeding tube that I have been talking about.

Here is a closer look at the port at the end of the feeding tube.Isn't he the sweetest thing in the world though?B's voice is also starting to come back which is very hopeful for his vocal cord. They will do a clinical assessment of him next week to see if he can maybe handle thin liquids again. He is also starting to laugh, which is the funnest thing to hear. He laughs like an old man who smoked all his life. And he can't laugh for too long because he can't breathe. It is so fun to hear it again though. And this kid is ALL BOY! He makes boy noices and throws things and crashes toys against each other and laughs. It is really fun to see him grow up and explore and learn. His vocab is coming along and he can say dog, car, mama, emma, dada, down, and he has a pretty awesome ROAR! We love our little guy and are so grateful for him.

The Johnson Juggle

2009-02-08T19:08:00.000-08:00

Are you ready for this? Here is what we have been up to these past couple of weeks. I have had so many incidences occur that I thought, "oh, this would make an awesome blog post" or "this is unbelievable, we need to put this on our blog". But I haven't. So here goes, starting with...

Emma!

Emma has been very playful lately and at the stage where she wants do something over and over and over again, and has the energy to do it, but the problem is that us a parents don't. She and Burke took turns sliding along our tile floor in the laundry basket. Ty said he has never loved our tile floor so much. It worked great and it didn't scratch it at all! I am SO glad that weather has been nicer lately. It has been my saving grace. And I have noticed a huge difference in the kids when they are able to get outside and play. We ride our bikes a lot and go on walks or go over to grandma's. We have even taken a couple of different dogs for walks too. Emma loves her cousin Sadie's dog, Sally. We needed to get out one day and thought to ask them if we could take their dog for a walk. It was great because Emma LOVES walking dogs. She could totally be a dog trainer one day. She loves telling the dog what to do, where to go, and where not to go and so on. (We were nice to Sally, Mindy, so don't get us wrong). She also likes to feed and take care of the dogs too. I think it is her motherly nurturing tendencies that shine through when dealing with animals, and I absolutely love it! I think she is a lot like how I was when I was a little kid. We have also taken one of the Stewart's puppies for a walk and go and play with them frequently. We are currently watching Tucker's dog while they are at the ranch for the weekend, and on Saturday we went on a family walk with "Rudy the Dog" (as Emma calls him). It was really fun and felt nice to be outside again. Emma LOVES to block the door so that daddy cannot leave for work! She always wants me to come with her, and this specific morning Burke was there to block daddy with us. It was a perfect shot right before I left to go grab the camera. Just picture Burke in between Emma and I looking at daddy the same way as Emma is. I wanted to capture it, but as soon as I left, Burke started to cry because he thought I was leaving, so here he is wanting me to pick him up. Oh well, you get the just of it. Emma does this almost every morning now. (Notice I actually got my hair done that morning, but no make-up-see how tired I look, yeah, that is my usual look these days!)

This was taken a few Sundays ago. We had been home from church for no more than 10 minutes. We put a movie on for her and she was a goner. This time it wasn't Flicka, maybe it was Beauty and the Beast or "Spider Web" (aka Charlotte's Web) but who knows, all we do know is that this is THE way to put her to sleep these days. She has really taken this whole Burke recovering from surgery thing pretty hard. It has been very stressful on all of us. On top of all that is going on, she got sick with a cold from Burke, and then ended up getting a UTI that seemed to last forever. That finally subsided with the meds and today she seemed like she was fine, but when we were sitting in church she asked to go home! Yeah, Emma never asks that unless something is wrong! The last speaker was great and I didn't want to leave in the middle of his talk, so I tried to hold off until he finished, but Emma probably asked to go home a dozen LOUD times. We left as soon as we heard his amen. She almost fell asleep while I was checking her temperature, but she was fighting it big time because she wanted to wait for the beep on the thermometer. She has been in bed for awhile now, so hopefully she can just sleep this off and not pass it on to the Burkers. Lately, since we have stayed home a lot, we have has a lot of dance parties! Emma has always loved singing and music and she can pick up songs really quickly. So, we dance crazy to music and we all love it. Burkers even joins in and wants us to hold him while we dance. Or he will just stand there and nod his head. Yep, he is a head banger- watch out rockers, here comes Burke! We were trying to get a good picture of daddy and Emma for daddy's birthday- yep that's right last week we celebrated Ty's 30th birthday!! Here she is trying to do thirty on her hands. This is Emma's idea of a "good" picture. She is so not cooperative when it comes to taking pictures these days. But, she still looks cute, and our daddy looks good too! We didn't do anything exciting for his birthday this year. We just hung out at home. I did make him a cake though, and believe it or not, I didn't get a picture of it. I am so mad because it was so cute. Not as cute as his cakes that's for sure, but it was a good attempt. It was two round cakes stacked on top of each other and frosted green and I used a decorating tip to make a black border around the cake. And we simply put a toy tractor on top (it was really cool it makes noises and everything) and put 29 candles on it. We ran out of candles. It was cute and I was proud, and I got it on video but not on still shot. So, until I figure out how to put a video on the computer you will just have to image this adorable cake in your mind! We celebrated over a couple of days worth and gave daddy socks (I've never seen him so excited over socks before- but he was just asking where all his socks had gone, so it was the perfect gift for him this year), and a large world map. Happy Birthday Ty we love you and hope you had a great day!This is Emma and Susanne Walton. The Waltons have been so great-they have taken Emma for me a couple of times so I can get a little break. Emma loves them and we are so grateful to be friends and family with such wonderful people! We love you and thanks for emailing this pictures to me, Susanne, you look so cute in these!

We are learning a lot about our Emma right now. She is at a really hard age, and with everything going on with Burke she has been acting out a lot. It took me awhile to adjust to her outbursts, but I think we are learning how to deal with her better now. She is very strong willed (wonder where she got that from-you decided-wait, I will tell you so you don't think I am blaming it on Ty.) It is both of us, both Ty and I are so strong willed and Emma got a huge dose of that, actually we are learning Burke has a dose of it too, only time will tell how much of a dose he got dished. I think it is a way for me to learn what my parents had to go through while raising me. Sorry mom and dad, I was probably pretty tough sometimes, and still am. Thanks for putting up with me.

Emma is learning to identify and write her letters and numbers. She is constantly asking if she can have a fruit snack, or if she can watch a movie, or which friend she could have over. She is usually a big help to me and has been so sweet to Burke and comforts him when he is throwing up or at the doctor's. I had to take her to one of Burke's dr. apt the other day and he ended up getting an ECHO done on his heart, which is just an ultrasound. She was doing great through most of the apt and just near the end she was getting restless. She came over to Burke's side and started saying quietly to Burke,"it's okay Burke, it's okay, you're okay buddy." Mind you Burke was sitting great in my lap and not crying at all. Emma just wanted to make sure Burke was comforted just in case he needed it. That is the way Emma is, and I love her for that! She is learning a lot from going through this experience with Burke, and I hope we can teach her the valuable lessons Heavenly Father wants her to know by going through this.

Emma and Daddy

2009-01-19T15:17:00.000-08:00

The other day Emma and Daddy wanted to watch the newest addiction at our house- Flicka. It is at the top of my favorite movie list and when daddy told Emma that, she decided it was her favorite movie too. And it is, she LOVES it. I recommend it to those who have not seen it, though I have to warn you, it is not the best made movie, not the best actors, and sometimes has cheesy lines. I LOVE it though. Tim McGraw is in it so it explains why I like it so much. Anyways, Emma watches it almost everyday, and on the days she doesn't get to watch it, she asks to watch it.

So, the other night, Emma and Daddy were watching it, and I didn't want to watch so I was in the other room on the Internet watching the TV shows that I can see on abc.com since we don't have regular TV. Anyways, Burke was asleep and Daddy said that he was going to deal with Emma and they were going to just finish the movie and he would put her down after it was over. After a LONG while, I decided to check on them because their movie should've been over already and I found this:Check out her neck- it looks painful. And I can't believe she was still asleep because daddy was snoring like a bear and the music at the end of the movie was blaring. It was so funny I had to capture the Emma and daddy moment. And this is extra fun to see because Emma never falls asleep on the couch to a movie, it was great!

More Craziness Continued

2009-01-18T14:27:00.000-08:00

Burke is about to wake up from his nap, and I want to take this time to continue from the last blog post about our crazy lives. So here goes.

My back has been feeling a TON better of which I am so glad, until two weeks ago when I slipped on some snow at a friend's house. I totally tweaked (sp?) my neck and back. It has been okay since, until two days ago when I literally woke up in the morning to awful pain and could barely move. I would yawn and my back hurt, I would point with to something and my back would hurt. I had to go see my awesome NUCCA Chiropractor (whom I highly recommend- Dr. Stork in Meridian, Idaho). I luckily was squeezed into their schedule that morning and was seen. They told me that one of my ribs is out!! What? I never knew that happened. I thought maybe it was broken? No, I just slept wrong, I did absolutely nothing to break my rib, but no, that meant that my muscle was pulling my rib out of its designated spot in the body. Yeah, who does this happen to, oh, only me! And it happens to me when I have everything else piled on my plate. I don't have time to ice, rest, heat and repeat. No, but Dr. Mix (Dr. Stork's wife who is in the practice with him) said that maybe this is my body's way of telling me that I am over doing it. Nah, couldn't be. I don't have huge stresses on me right now. NO way. It's not like I am taking care of a sick child who just had two major heart surgeries in the past two months, no, I am totally not over doing it.

Okay, you saw right through that one, I am totally over doing it, but that is what I have to do. I thought I have been dealing with the stress of everything just fine, until I happened to sleep wrong (actually on my tummy) and all heck breaks loose and my back gives way. But, the realization I am coming to is that life will go on. It has to no matter what.

So, that was Friday, and then on Saturday morning feeling much better from almost being incapacitated the day before, Burke wakes up with a cold. A cold!? You've got to be kidding! How could this kid get sick when I do everything to keep him away from things that would make him sick. Luckily it hasn't gotten too bad, obviously, or we would be posting from the hospital right now, but it is not too bad and hopefully won't get too bad. He needs to be well for his heart catheter next week which is vital to getting his left branches of his pulmonary artery to grow. He can't have the full repair of his heart until the pulmonary arteries grow. And right now they are growing very, very slowly, if at all. But, we have canceled appointments before and we might have to do it again if he doesn't get better soon.

Tyler and Emma went to the ranch this weekend and Burke and I have stayed home. And since Burke is sick, I said, what the heck I might as well go to church and take him with me. We just sat in the back and tried to stay away from a lot of people. It was great to take him. He hasn't been to church in months. And he has only been to church a handful of times in his life anyways. He did great and looked SO cute in his attire. Thanks to my sister for having a boy who is a couple months older than Burke, Burke has so dang cute clothes! The shirt and pants are from Kyle and the vest he finally fits into and shoes are ours. Here is what I had to do in order to get ready to go to church.

Because I wanted to get in here

I had to get him all situated in this. He needed to be on his feeding tube and now that he is walking EVERYWHERE, I couldn't be sure that he would just sit while I took a shower. So, I thought and thought how I was going to do this, and I came up with this. I have never brought my highchair into our bathroom, but man this is THE way to go. It worked like a charm, and I was able to take a nice hot shower, do my hair and get ready for church and guess what? We were ever a little early for church! YEP, that's right folks I can do anything!

Here is the big church going man!

Our Recent Craziness

2009-01-18T12:12:00.000-08:00

Here is what has been going on in our house lately. I haven't blogged in awhile because it seems like one thing after another just piled on our plate without a break. We are surviving it though and as I think about all that happens during my day or over this past week, it is probably good that all of these things happen so that I do not get complacent. So that I stay on my toes in order to be ready for anything and not let it catch me by surprise. Because I am learning I do a lot better when I am mentally prepared and aware for something, or when I know that there is a chance that something could happen. Heavenly Father knows me so well and is prepping me so I can manage taking care of our precious Burke.

Here is a look into our lives at this time. Burke has a feeding tube in his nose that goes into his stomach also known as a NG tube. He gets fed through the NG tube every 3 hours during the day for a total of five feedings a day. The way I feed him is by a feeding pump which looks like an IV stand and you might have seen it in one of the previous posts where Burke pulled it over during the night. The feedings last 45 min. and he recieves about 4 oz. over those 45 min.. Then on top of that Burke gets fed on a contiuous feed all night long. He gets about 1 oz every hour for 10 hours. Let me tell you that the feeding pump alone is a full time job in and of itself. Not to mention that I have to check the NG tube placement everytime I go to feed him or give him his medications. I have to check placement by drawing back some of the fluid from the stomach to make sure it is in the correct spot and that is hasn't moved. Sometimes the tube gets stuck to the wall of his stomach and I can't pull any fluid back. I have to then try and push a couple of cc's of water to check if it is clotted or if it is in the wrong spot. We also were taught when he was first born (because he came home with a feeding tube then too) to check placement by pushing a few cc's of air into his stomach and listen for a swooshing sound and that tells us that it is in the stomach. I do that if I can't draw any fluid back but it is not a routine way to check placement anymore. These details seems to maybe not make sense to some people which is COMPLETELY understandable, and may also seem boring and lengthy to others. Again, understandable. But, I write this to describe what I have to do in order to take care of Burke. I am not writing this to complain, I just need to get this out, so I can get it out of my system and move onto with my day, onto another feeding. Or wait, I guess I have about 2 hours and 15 minutes until I have to start another feeding, because I just got back downstairs from stopping one of Burke's daily feeds. And I have finally become good enough as to not wake up Burke if he is sleeping. He I think is now used to the beeping enough to just sleep through that when I turn off the feeding pump.

So, last week I was worried that the feeding tube was in the wrong place and I could not for the life of me draw back any fluid. So, I had to call David, Ty's brother who is an ER doctor and who happens to live right around the corner from us. I knew this wasn't an emergency, but since he was due for a feeding, I had to get it checked out it see if it was in the right spot. Thanks David for checking it that day, and thanks to magical worker David, Burke's tube drew back fluid on David's first try! Yeah, I had just checked it before leaving the house, and Ty had just gotten home for lunch and he tried too. Anyways, that's how it always goes when you get something checked out, and when the doctor or nurse checks it everything is fine. We had a good laugh over it though.

Okay, so Burke had a great afternoon nap that same day and low and behold when I go and get him from his bed that blessed NG tube was pulled out of his nose. It was still taped to his face, but the part that is supposed to be in his stomach, was now outside of his stomach. On top of knowing that I had to be the one to put it back in, the tube had leaked all over his bed dripping stomach fluid mixed with formula! Yum, throw up smell everywhere.

So, after cleaning up his bed and him, I had to deal with the fact that I had to put it back in. I was taught to put the tube in when Burke was a newborn. And when Burke was in the hospital just two weeks ago, I tried to put it in then because it got pulled out during his swallow study. I tried, and I failed. I tried, and Burke turned blue, purple, and every bad color pointing to the fact that the NG tube probably went down the wrong tube and was obstructing his airways. Not good. And the nurses just stood there and hardly did a thing, while I was freaking out debating on weather or not to take it out. "Should I take it out? He doesn't look right to me. He can't breathe, what should I do?" I said in a total panic while the nurses just held him down and didn't say anything like they had gone mute. So, I quickly took it out and comforted my poor child. So, I told the two nurses that whom ever is the quickest at putting in tubes should put this one in. Of course, the senior nurse tells the junior man nurse (I usually don't have anything against male nurses, because I have LOVED our male nurses down in Utah, but this one-enough said) that he should be the one to do it. OKay, I knew that she was trying to teach him, but come on, don't have some one train on a heart baby who has oxygen for a reason- he already isn't getting enough on his own people. Don't put him through more trauma than his has to. Anyways, he couldn't get it in and told the other nurse to do it and she got it in on the first try and everything was fine after Burke took a little while to recover from that traumatic experience. Okay, so long story, I tried that time, but did not suceed, and I knew I had to do it again, but this time suceed. So, Ty was supposed to come home and help me hold Burke down while I put the NG tube in, but he had to stay at work late, so I chose to do it on my own. The hospital told us to come in to have them put it back in, but there is a reason why Primary's specifically taught me before I left the hospital, so that I could put it in in this situation.

Anyways, I tried and he turned blue again. It was awful and terrible he couldn't breathe and was choking. I regained my strength and knew that I could do it, so I tried one last time, and I did it! Yep, that is right, I put in an NG tube folks. I need to remember to put that on my resume. I was so proud of myself for what I had done. I taped it to his face and though it was not as nearly as good as Tyler's tape job from the week before, but it was a fine tap job and that was that. I had our good friend Angie who is a nurse come over and check the placement just to be sure, and she said that it was in. The only true way to tell if it is in is to do an x-ray, but since we were getting fluid from the stomach, it was most likely in. (And there was NO way I was going to the hospital again just for that).

And I do all of this, and a ton more all because of this little kid.

I was going to write more, but I think I will let you all have a breather, (breathe now) and I'll write more about what else I do during the day/night another day. But before you go, here are some more reasons I am doing what I do, and keep doing what I do everyday.

Updating Burke's Pictures from Hospital Stay

2009-01-11T16:40:00.000-08:00

Warning: very long post ahead. You all have been warned, but I warn you, there will be some dang cute pictures, so enjoy (okay so I'm biased, sorry)! Okay, I want to update some pictures of Burke while in the hospital in Dec. 2008. The one of Emma, Burke and I was taken on Christmas Eve, Emma came with me really late that night and spent a little while with Burke. We had a great time. Below is Burke playing with his "toys". A lot of the nurses commented on how the kids who stay in the hospital for long periods of time begin to enjoy and want to play with the instruments that the doctors and nurses use. He was very interested in the thermometer and here he is trying so hard to get it back into its holder. He got so frustrated when he couldn't get it back in. There is one of he and Santa a couple of days before Christmas. He came around to every child in the hospital. He was pretty excited to see him at first, but when Santa began to shake his bells, oh man Burke just cried so hard and was literally scared so bad that we tried to comfort him until Santa left. I had the camera at first taking pictures at the beginning and then when I saw the look of complete and utter fear on Burke's face I decided to put the camera down and comfort my child laying helpless in the hospital bed. And we come to find out after Santa left, that this Santa is THE Macy's Santa. I don't know how Primary's was able to steal him for this Christmas, but that is THE Santa, pretty cool huh? The picture of Burke sleeping was the first day he was extubated after having the breathing tube in for about 2 weeks. Doesn't he look totally peaceful? I walked into the room to him looking like that, and I about cried, because for the previous two weeks he hadn't even looked like himself with all the tubes he was hooked up to. I love that picture also because it has a literal and physical evidence that Burke was making progress. Tubes were beginnning to be removed slowly and having the breathing tube come out was a huge step and huge physical change that I as a mother just loved. My little Burkie was coming back to normal. The one of Burke and I just shows when he was first starting to sit up again after surgery. He was really weak still but he loved sitting up and looking at everything.

Here are some of us on Christmas day. I can't have all of the ones be perfect of Burke so, the one above is so sad. He always wanted me to hold him. Burke got to ope his stocking in the hospital. In it was a bunch of tools and a few animals. I also learned how to crochet just before we went down to Utah so I was able to make quite a few hats and finished this brown one for Burke just before Christmas. It is so cute and fits him great, but some people might confuse Burke with being a chemo patient- he's not though! But the hat is decieving. Emma was cute opening her stocking. We had opened presents with her earlier that morning at the Ashton's condo where we were staying. The only thing she didn't open was her stocking and she was SO excited for this. She got some animals also but she got new big girl panties which she wanted to open each one and take the little tape off of each one and threw them all over Burke's crib and on the floor. She thought they were pretty cool. The below two pictures are documenting Burke's room and the atmosphere and also to show that daddy was really present. He got sick while we were down there and wasn't able to come into the PICU for a few days. Luckily by Christmas day he was feeling better and was okay enough that he put on a mask and saw Burke on Christmas day. He was our designated video camera/still shot man! It was great, and I was so glad that we were able to be together on Christmas, but I felt so bad for Tyler as did he because he wanted to be with Burke but we just couldn't risk him getting sick.The last three are some random pictures of cute Burke. I've realized this is totally out of order and kind of crazy and not organized at all, but I think you get the just of it. But now I can finally post pictures of when we got home from Primary's and get on with my life. As can you after this long winded post.

Picture of Burke home from hospital

2009-01-07T10:45:00.000-08:00

Burke playing with Emma's purse right when we got home yesterday. I just wanted to document his homecoming from another unexpected hospital visit. At least this one was only two days and not three weeks. We are making progress here folks.

Last Night

2009-01-07T10:22:00.000-08:00

Are you kidding me? Last night, actually last evening, was the evening from HECK!! We thought Burke would go down great considering his sleep deprivation while staying in the hospital. We thought Emma would go to sleep too with all the craziness that she has been through with playing over at Grandma's and with Will and Weston the past couple of days. But oh no, we thought TOTALLY WRONG!! We tried putting Burke down about 8 or so and he just cried hysterically. This time he didn't end up going into coughing attacks because of crying so we just let him cry it out, trying to get him to learn that it was bed time and that he is supposed to go to sleep without the help of mom or dad rocking him to sleep like he used to do before these past two surgeries. The crying went on and on, and we knew he was okay because it wasn't like he was gasping for air, he was just crying to have us come yet him out. By that time last night, I was done. I was spent and I just wanted him to stop crying and Emma to actually stay in her room and TRY to fall asleep. But no, the second I walked down stairs from putting her down about 9:30ish she came out of her room (which is a HUGE NO NO at our house) and called for me at the top of the stairs, "mommy, I'm not tired."

After multiple attempts at putting her back in her bed I shut the door to her room which is the ultimate punishment for her. So, I have this crying sleep deprived, now spoiled little boy and this screaming at the top of her lungs little girl all wide awake late last night. Not a good thing. What was a good thing though was Tyler who was in a great mood who dealt with Emma and convinced her to go to sleep and then picked up Burke and brought him downstairs for a little while longer to play. Usually we are both tired by then so the whole family is bent out of shape, but Tyler was amazing last night and saved the night. He did end up getting fed up with Burke's winning for me to hold him, resulting in me taking him and putting him back to sleep where he FINALLY decided that he was tired. This is how we found him last night when he would NOT fall asleep. It was pretty funny and we had a good laugh. That is his feeding pump that is another one of his little buddies these days. He had never tipped it over until last night. Hopefully this won't be a habit for him and we can get him back on his schedule that he was on way back in November. Sigh.(Click on picture to see the close up of Burke expression on his face- classic Burke face.)

We're HOME!!

2009-01-06T16:02:00.000-08:00

Yeah! We finally got discharged from the hospital this afternoon and arrived home about an hour ago. Burke is doing well, and trying to get some sleep upstairs right now. When we got home he was playing and just enjoying being in his own territory.

The swallow study went well today. He is still aspirating thin liquids though and cannot have anything by mouth that is thinner than honey consistency. We are learning though that his tongue probably has a lot to do with why he can't swallow some foods. He has had his tongue clipped twice, once when he was about 6 weeks old and then the second time just last August and he even had to be put under for the second procedure because it would be too traumatic for him otherwise. So, in August we thought we conquered his tight frenulum, but oh no, it has fought back. Since he sucks his fingers all the time he forces his tongue to stay down which is bad for chewing and swallowing. His tongue needs therapy (that sounds funny) and we will be going to a speech therapist regularly to help with his tongue needs.

His lungs sound good now after a couple of days on the antibiotics and the cardiologist actually stopped that med, so we will see how he does. He is on reflux meds to help with the food coming up from his stomach, but that won't totally help him from aspirating the food in his stomach. So, we will see if we land in the hospital again sometime soon for aspirating because sometimes you can't even tell if the foods he has been approved to eat will go into his lungs or not. Great. We are pretty much perturbed right now and it is probably due to the fact that Burke is way fussy right now while we are trying to get him to go to sleep. Hopefully he will have a good night sleep and be in a better mood tomorrow. We are doing well just a little tired. Until next time, when there will be yet another thing that will come up on top of everything else going on. I don't mean to leave on a bad note, I guess that is the way it is when I am tired. So long.

Burke's in the hospital, again

2009-01-05T19:31:00.000-08:00

Yesterday Burke was admitted to the hospital here in Boise. He was coughing a lot Saturday and Sat. night and we called down to Primary's to explain what was going on and the NP said you need to immediately get him checked out. We likewise talked with the cardiologist on call here in Boise and she likewise wanted him to be seen. Off to the ER we went. Ty stayed at home with Emma because we thought it was just another check up, but we soon learned that it was more than just a check up.

He got a chest x-ray and they saw that he has fluid in his lungs, more in the right than left. This tells that he has been aspirating the food that we have given him and even the food that has been in his stomach. When he has these coughing attacks (mostly Saturday night- all night long) he coughs so hard that he gags and then chokes because he is refluxing and when that fluid comes up he aspirates it which means it goes directly into his lungs. They have officially diagnosed it pneumonia because any fluid in the lungs is pneumonia. They put him on a powerful antibiotic and temporarily stopped his feeds yesterday and last night so that he wouldn't reflux his stomach fluid. He had a great night last night and actually slept and didn't have bad coughing attacks. He coughs every so often because there is still fluid in his lungs but not nearly as much as there was. They had to increase his oxygen yesterday but were able to ween him down to only 1 liter which is what he is on at home.

He had a good day today. Tyler stayed with him during the day so I could go home and get some sleep because I stayed over last night with him and hardly slept. But it is for sure a lot different when Burke is in the hospital here in the town we live in. We actually can go home and escape for a little bit. It is amazing the difference. Burke should only be in the hospital until tomorrow evening, but maybe longer. They need to watch him as they introduce more feeds. Tommorrow he will have a swallow study performed on him where they can tell which foods he is aspirating so they have a better idea of what foods he can eat. I guess I should give some background to why they need to do this. When he was at Primary's he had to be put on ECMO (heart lung machine) and they had to go in through the viens in his neck. They might have damaged the nerve that deals with his vocal cords and also deals with his swallow. His right vocal cord is paralized and hopefully over time if the nerve is just stretched it will improve. If it was cut then his voice might not come back. But we are hopeful because he could hardly talk when he was discharged from Primary's and just since that time his voice has improved a lot. We are anxious for tomorrow swallow study to see what foods he can eat, because the poor little guy is so hungry and wants to eat so bad.

As a result of the pneumonia he is in isolation and every nurse and doctor that comes into his room has to put gowns, gloves and masks on. Emma was given a mask to put on a hospital dolly that she got at Primary's and she found it in her room tonight. She immediately wanted to wear it. I took the chance to take her picture because she never has wanted to wear it until tonight. I thought it was very fitting considering Burke is in isolation. He didn't get the pneumonia from someone, so he probably is not contagious (especially now that he is on a very powerful antibiotic) but they take every precautions to make sure everything is sanitary for others.
Overall Burke is doing well and very anxious to get out of the hospital yet again. But he has been such a trooper and has dealt with all the doctors and their examinations for the most part, really well. Hopefully after this pneumonia goes away we can have a couple weeks of peace and quiet before he has to go to Primary's again for another heart catheter to balloon open his arteries at the end of January.