Monday, September 15, 2008

"Emma, How Much do you LOVE The Ranch?"

Emma's reply, "THIS MUCH!"
Need I say more. I love this girl. She is so full of life I LOVE it. This picture was taken yesterday at the ranch. I asked her that question while she was washing the four wheelers with daddy. She was a huge help to him.

This is our second time going up to the Ranch within two weeks. We had so much fun on Labor Day weekend up there that we decided to go again this past weekend. The weather is beautiful in McCall at this time of year. The days are perfect weather, and the nights are cold and crisp and in the morning we get to build a fire. We are grateful that we have such a place to escape to from everyday life here in Boise. The Breinholts were up in Donnelly with Mike's parents and so they came to spend the day with us on Saturday and we had a blast with their family. We rode Hawkeye, played horseshoes, Becca and I played Speed which was so fun, and Tyler and Mike went on a long four wheeler ride to the lookout point and got a tour of it. We went and played on the awesome rope swing. I could go on and on, but we had a blast with them! The kids loved it too. Here are some pictures from the past two times of going to the Ranch.Holding his tool while ridin' his horse. Boy through and through. If we let Burke he would've driven the four wheeler by himself- he loved it!
We ate dinner at the park on Payette Lake one night
Emma with cousins Kennedy and SydneyEmma loving walking through the cold river!Here is the after the river picture where we had to walk through a bunch of sand to get back to the four wheeler. Burke sat quietly at the river bank totally engrossed in the millions of rocks right under his nose. Needless to say, he ate a bunch of sand that night sucking it off the rocks he'd found.This is his "innocent face".
Our little cowgirl holding her baby doll trying to get her baby to go to sleep
Emma riding Hawkeye
Burke's first time riding HawkeyeMy boys
I got a couple of chances to ride tooLittle Adorable Savannah I love the walking away pictures. I think this is when McKayla was walking the horse and Ben is riding. This is Ben and McKayla Breinholt who were great riders!! Good job guys!

Thanks so much Becca and Mike for coming over to spend the day with us, we had a great time!!

Wednesday, September 10, 2008

Emma's first day of Preschool!!

Before preschool with her back pack!

That is right, you read it. Emma is officially in Preschool. Her first day was Monday, September 8, 2008 (for documentation purposes). There is a group of moms in our ward here that got together and decided to do a Preschool co-op. It works out to be one mom teaches the group of kids in her home for the two days (Mon. and Wed.) for one week for two hours a day. Then it is the next moms' turn. Some of you probably already know all about these types of preschools. Anyways, I was so thrilled when they let Emma in because she is the youngest one in the group. I have wanted her to get enrolled in regular preschool because she is at the age where she is getting bored at home with me (why in the world would she get bored with me, come on!) and just needs more that just being at home. But, regular preschools won't allow kids under three, if you don't turn three before Sept 1. then you have to wait until the next year. And Emma's b-day isn't until November. So, Emma was going to be one of the older ones at preschool next year, but now this one is obviously more relaxed on age, but they are still learning and having fun like regular preschool! I am excited for it, and so is Emma. She had a blast the first day! Teacher Misty taught this first week and did some really fun activities and was great with the kids!! Emma didn't even cry the second day!! (Yes, she did cry the first day when she realized that I was not staying at preschool with her). It was so sad. But when it was all said and done, she LOVED it!! After preschool, she also went over to Anna's house after preschool so she had a fun morning of playing with friends!! I love this smile, she is showing off her new puppet she made.
She was so cute and excited that she went to preschool for the first time!

My little girl is growing up so fast I cannot believe that she gets to go to preschool already and also that I am a mom of a school-aged kid!! Crazy!

Friday, September 5, 2008

Heart Surgery and Testing Postponed

If you happened to read the last few sentences of the last post then you already know what I am going to say. But there is more. So, yes Burke's heart testing and surgery is postponed until October 14, 2008 and the review with the surgeons and cardiologists will be on the 15th and tentative surgery on the 16th! Now, the reasoning behind the madness. Testing was supposed to be on the 16th of this month. Now, that would've been in two weeks and they postponed it because he just got his tongue clipped and tubes put in his ears. We got the approval from our cardiologist here in Boise to go ahead with the ear surgery and everything, but then she called down to Primary Children's and talked with his cardiologists down there and they thought it would be best to push surgery back until Burke is all well and good.

I am trying to decide what to write because now, it is almost a week later that I am finishing writing this post and my opinions have changed drastically since I first found out that testing has been postponed. My first reaction to it was a big fat WHY? Why in the world would they postpone testing when my child is currently on oxygen and only has 74% oxygen levels? He is also getting increasingly more tired out from playing and he huffs and puffs more. The blue tint to his hands, feet, finger nails, and lips is more frequent also. Last week my opinion was that he needs the surgery when it was scheduled for which was Sept. 18th. But, I am realizing that things happen for a specific reason. I might resist to an idea at first, but once I realize that it is in the Lord's hands then I can go along with the circumstances a lot easier.

I was also so mad at the doctors. I was mad that my cardiologist called to check with Primary's when she didn't have to but just wanted to tell them what was going to happen, and I was also mad that Primary's decided to postpone because they thought he needed more time to recover from going under general anesthetic when he got ear tubes and his tongue clipped. They want him to be at "optimum health" Primary's said. So, after I got the call from Dr. Walker our cardiologist here in Boise, I called down to Primary's and asked to speak with Dr. Jou our cardiologist there. This man is the nicest most excellent doctor we know of. He has been on Burke's case since Burke was born. Yep, he was there the night Burke and Ty flew into Salt Lake. And honestly, he cares so much for Burke we are so blessed to have such a great team of doctors on our side, all pulling for Burke. So, I talked with Dr. Jou and asked his straight out why do they want to postpone? I was so frustrated and an emotional wreck over the whole idea of wanting to push surgery out, when the surgery he had on his ears was going to take away Burke's sicknesses, not make him down or sick for very long after the surgery.

So, Dr. Jou explained to me that they want him to be a "optimum health" and they feel that they should postpone it because of the surgery that was done on his ears and tongue. Now, we talked for a long time after that but I won't get into all the details of it, but it is what it is. Now, I don't know weather or not the cardiologists down at Primary's don't understand what goes on in a surgery where someone gets ears tubes or what, because it seemed like they thought he would still be sick after the surgery. I can understand if they think that just by Burke going under general anesthesia would automatically make him a little under the weather, that makes more sense to me. But it seemed like they thought he would still have an ear infection or something, when in reality they suck out the infection when the doctor puts the tubes in. So, Burke will no longer have ear infections, which is a wonderful thing!!

So, it was a little hard to determine exactly why it has been postponed, but I look at it a week later, and I completely understand why they postponed his testing. Burke got sick with a cold a couple of days ago. They won't do surgery on a sick child. I cannot believe he got sick again. But hopefully it is not an ear infection (that would NOT be good). We go for a post op check up to the Ped. ENT next week to check his ear tubes. But anyways, I have also been thinking that the main reason they keep postponing the surgery is because they need him to get bigger. Bottom line, they would love him to fat and chunky for surgery because it is easier for the surgeons and easy to recover for Burke. So, all along I have been trying to feed this kid and he just doesn't eat great. Because of many factors but the two main ones were his keeps getting ear infections, and he cannot suck or eat normal food very well because he is tongue-tied. So, now that the main to factors are FINALLY taken care of we are hoping and praying that he can now gain the weight he needs to prepare for the surgery he needs so badly. I have so much more hindsight now that just one week ago. I was basically down about the idea of postponing surgery one month longer, but now I am excited for what can possibly happen in that time.

The Lord knows exactly what He is doing. I just need to be better at listening and being more in line with the Lord's will rather than thinking my plan for Burke is the right way to go. Because surely if it was up to me, we would not have to deal with this oxygen anymore. But, I am learning patience. I am learning that I have way more to learn. But the Lord keeps putting his trust in me and keep relying on me to take care of a special spirit who has come to this earth for a distinct purpose and plan. I know that for a fact and the Spirit has told that to me in my heart, I feel it and I feel it now. Burke is so special and sweet and I am grateful for everything that we can learn from our trials. I couldn't have imagined to know what I know right now, just one week ago when I thought the doctors didn't know what they were doing when they postponed testing. And you know what, maybe there wasn't a perfect reason why it was postponed, one that makes no sense to you an me, but in the Lord's plan it made perfect reason to Him to postpone it for one more month. Maybe it gives the doctors that much more time to figure out Burke's complicated heart. Because I am learning more and more that his heart is far from normal. Far from text book and far from being easy to fix. Tyler has said that he is excited for more testing and more time. More time to get Burke to grow. And more testing to know exactly what should be done with his heart. And they have brought on another surgeon Dr. Hawkins (the same doctor who performed heart surgery on Seth Boyce). He is the Senior Surgeon and he is now on the case, which rarely, if ever has happened. Usually, one surgeon can handle the case, but not with Burke's heart. He has a team of doctors both here in Boise and mainly in Utah all working together on Burke's heart to figure out what needs to be done so Burke can have a nearly normal working heart. We are grateful for all the doctors and everyone involved in Burke's case to see that his heart gets fixed. We are grateful to The Lord who is merciful in allowing us to keep Burke with us for this long. We are grateful for the good things in Burke's heart like how strong it is. And for how well his body is handling and adapting to having low oxygen levels, and we are grateful for his sweet spirit. We love you Burke, you're a trooper!

Thursday, September 4, 2008

Burke's a New Man

I am kind of skipping forward to the present. We found out some exciting news two weeks ago that Burke was able to get tubes put in his ears and at the same time he would get his tongue clipped. Many of you know that when Burke was little he had his tongue clipped, but it wasn't clipped very well and has needed to get clipped again. Everyone told me after he got his tongue clipped he would eat a 100% better because he would be able to suck better, but Burke didn't. I thought, maybe I'll give it some time. So, I did and realized that something was still wrong with his tongue and that I ought to go get it checked out again. My Pediatrician sent to me a great Physical Therapist, Pat, and she worked on Burke and gave me some exercises to help his tongue loosen up. His tongue was also tight in the back of his mouth and hadn't released all the way in the back. So, after a day of doing the tongue exercises on Burke, he decided that he didn't like me sticking my finger in his mouth all the time. So, basically the therapy from there on out didn't work. I still thought he needed it clipped again. But as I talked with other doctors, (my pediatrician, and cardiologists) they all said that no doctor would want to do the surgery to get his tongue clipped because of his heart. By now Burke would have to be put under general anesthesia because it is too traumatic to do it otherwise, and the Ped. ENT (Dr. Beck) wouldn't do it unless he was under because he has teeth. After months of talking to other doctors, I finally made an appointment with the doctor who could really tell me if this was possible or not, the Ped. ENT (Dr. Beck who has done ear tubes and tongue clippings for a lot of the Johnson family) to see what she thought about his tongue. It takes months to get in for an appointment with Dr. Beck, so we had to just wait it out.

Along with his tongue being tight, he has had so many ear infections since he was born. Probably 10 or more. He, along with a lot of the Johnson kids, was a prime candidate for ear tubes to help his ears drain better so the infection won't build up behind his ear. Again, all the other doctors kept on telling us that no doctor would want to put tubes in his ears because of his heart. So, we basically would have to wait until after his heart was fixed, and that is still unknown also. So, I finally said, you know what I am going to ask Dr. Beck what can be done with his ears at the appointment regarding his tongue. This is a long explanation, I'm sorry, but this is a great way for me to document my life and Burke's life with a tied tongue and chronic ear infections.

So, two weeks ago we get into Dr. Beck's office and she checks out his tongue and sure enough she didn't clip it all the way the first time. She said that was really rare and that she was sorry they didn't get this figured out the first time. Oh, that would be too easy! So, she said she could just put him under and get it clipped, it would be easy and fast and he would be good to go. I couldn't believe what I was hearing. I was so excited. So, then I had her check his ears and sure enough he had a double ear infection, again, (that explains why he hadn't been eating very well lately). She said they could definitely do the surgery and that they could clip his tongue and put tubes in his ears at the same time. I was so thrilled for Burke. He would have a new life, one where he could suck well and finally eat better and he wouldn't get another ear infection!! What a great life huh! The only hang up was that we had to get approval from the cardiologist.

So, finally, after much persuasion and teaching from one doctor to another, our cardiologist gave the okay for Burke to go through with the surgery. We were so excited. While on the other hand, I had mixed emotions because I wished that we had this figured out the first time he got it clipped and that we could've had ear tubes put in sooner. But I guess now, it is all going to work out.

Today, was the big day. We went into the hospital at 6:30am (okay, it was a little later than that, I was running a little late) to check in for surgery. Everything went really well and it took no more than 15 minutes to do everything that needed to be done. It turns out that underneath the tongue (his frenulum sp?, it's called) was so tight and so thick she had to put 4 stitches and said it would be pretty sore for him. Poor little guy. But he did great and was chowing on a popsicle when I came to the post-op area. The moment he saw me he started screaming and crying hysterically. I asked the nurses if he had been like this the whole time, and they said no, "he was great for us, this just started when you walked in." Thanks Burke. I think he just realized that "oh, my mom isn't here, thanks for leaving me mom and now, would you please hold me, because I have no idea who in the world is holding me." He cracks me up.

When we were discharged from the hospital, Burke was really sore and he was so crankie and tired and I just knew if he fell asleep all would be well, including the mama. He finally fell asleep on the way home and has basically slept all day today. This afternoon we both had to get out and get some fresh air so we went over to grandma J's and he was so happy and acted like nothing had happened to him. He and Emma both by evening time were so tired that Burke was put to bed about 7pm and Emma fell asleep to me singing her songs at 7:20pm. She stayed at grandma's all day today and she got worn out. Thank you so much for your help today Jan, I really appreciate it, because I got some sleep while Burke was napping and that makes life a whole lot better when mama is well rested. That was a really long story and I am sorry I don't even have a picture of Burke in the hospital, I totally forgot my camera. So, maybe if I check the pictures and I see a good one, I will post it. We are thrilled Burke will be able to gain some weight by eating better for his next heart surgery which has been postponed until October 14th. That is another long story that I might get into later, until then, testing will be October 14, and tentative surgery on the 16th. Did you notice two postings in one day? I'm very proud.

Happy Birthday, BURKE!!!

Well, this post is a little late because Burke has been officially one for three weeks now. I'm a little behind these days. But, isn't that crazy he's one?!! We had a fun couple of days stretching out the celebration with him. The day or two leading up to his birthday was filled with explaining to Emma that Burke was going to have a birthday and that he was going to be one. We also had to get excited for her that her birthday was coming up (even though it isn't until November). She thought she was to have a birthday on the same day as Burke and that she was going to have a cake and everyone was going to sing to her. She is so sweet and I love that everything in her world is firstly, about her, and then a close second, about her little brother Burke. She wants her birthday to come so bad. And she knows how old she is going to be too!
We had a great day on his actual birthday, and then we celebrated it officially with the family the next day. We had a party over at Gwamma J's and had swimming(oh wait, it was freezing cold-sorry about the swimming thing people, I didn't think that August would get cold here. Isn't that technically still summer?) and cake and ice-cream. We had a great time! Thank you for everyone who came we appreciated your love and support! Here are some pictures from that day.This is the "happy" birthday boy! Why so serious Burke, you are only one!! As you can tell my kids (nor Ty and I) aren't morning people.
Okay, here is a happier picture.
Now, I didn't mention above about Burke's Cake. I was so stressed about this cake that I was just beside myself. And we wanted to have the cake match his main present and finding what we wanted was becoming kind of a pain. So, Tyler saw how stressed I was about this cake and figuring out how I was going to decorated it, he told me that he would do the cake. My first instinct was (sorry Ty) "are you kidding me?" But he kept on reassuring me that he would figure it out and he would do it and it would be great. So, after awhile I realized, I don't care how the cake looked just get it done and that was that. Anyways, long story short, Ty saved the day! I was out getting finishing things for his presents and came home to a beautiful or should I say cute fire engine cake made by Tyler! It was awesome and I was so proud of my little husband. He made my day, and Burke liked it too!
Here is him very seriously decorating the cake.
And here is the finished product! Isn't it great. Now, too bad for Tyler he is hired for all our kids' birthdays from here on out. You got your work cut out for you babe!
Burke was very nervous when everyone was singing to him. He didn't know what was going on! Poor kid, he looked totally confused. He didn't even get a chance to blow out his candle. The next picture shows the scene.Big sis Emma literally holding Burke back from blowing out his own candle! Hilarious. We told her she could help blow out the candle, but I think she thought that she was helping Burke by doing it herself because he didn't know how to. She is a big helper!!
Here is the happy camper diving into his cake. He was a little reluctant at first. But then he decided to give this cake thing a try, and he loved it! Happy Birthday Burke, we love you and are so happy that you are here with us and thank you for everything you have taught us this past year. We love you, buddy!