Sunday, November 22, 2009

Ode to Mr. Blanket

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!

Sunday, November 15, 2009

Full Repair Surgery: December 10, 2009!

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.


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?

Sunday, November 1, 2009

Halloween 2009

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!

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!