Friday, February 27, 2009


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!

Friday, February 20, 2009

The Rest of the story:Heart Catheter Story

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!

Tuesday, February 17, 2009

Heart Catheter

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!

Sunday, February 8, 2009

The Johnson Juggle: part 2

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

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 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.