Landen is going for surgery tomorrow

So it really has been a long time since our last update. Landen is doing well he has gained over 7lbs now and getting bigger and stronger all the time. We have been feeling the spring and are spending some time outside getting the yard and garden ready. Spring is around the corner and we LOVE IT! Both the boys love to be outside. Dad is came home the day before Thanksgiving and is doing great! He is back to work full time and made such an amazing
recovery. Other then that our only news is Landen will be going into surgery tomorrow to have granulation tissue removed for his g-tube, a tube taken out of his right ear and his tonsils out. The granulation tissue is extra scar tissue that has formed around his G-tube. Its irritating to Landen and it tends to bleed a lot. we had this removed back in October and had it all under control but when he pulled his tube out in January and we had to have the hole stretched and a new tube placed (something you who just follow the blog may have missed because I've not been keeping up) it irritated the tissue and the granulation tissue started to grow again.

We were already scheduled to have the granulation tissue removed from his G-tube and since I hate to have Landen sedated for just one thing I contacted his ENT. His ENT has wanted to do and exam and remove a tube under sedation for awhile now but I asked him to wait until we were going in for something else. We went to our pre-op with the ENT when he told us that he is really concerned that its time we finally take his tonsils out. We would have done it a year ago but we were concerned with how we would keep him hydrated and fed for the week recovery. We didn't want to spend a week in the hospital if he decided it was too painful to eat or drink. Before with Landen even if it was a minor illness the first thing he would do is stop eating. Since he has the G-tube now the ENT really thinks they should come out his tonsils are almost touching they are so big. We have everything ready to go and we expect to be in the hospital for at least 24 hours probably more. Sometimes Landen does quick recovery sometimes he just needs more time. We will be at Logan Regional for surgery. I've opted not to go to Primary Children's because I love our ENT and this will be Landen's third surgey there and 3rd hospital stay we know they do a good job. We have a wonderful ENT who always tells us he looks at Landen as a unique case and follows his lead rather then expecting him to act and recover like any of his other patients. Prayers and thoughts are appreciated a little worried about controlling Landen's pain levels I have been told this could be a painful recovery even though its a minor surgery. I don't know I never had mine removed.

Seven weeks...

It will be seven weeks tomorrow since Landen's g-tube surgery and what a long and stressful seven weeks it has been. There was the initial mix up with formula that caused Landen to get backed up extremely bad. Then there was the "getting use to it" phase. Which was hard for both mommy and Landen. Landen wasn't use to getting so much in his tummy at once so we had to spread his feedings out and the slowly make them larger till we got to our goal of 4 8oz feedings a day. Then there was the terrible infection that sent us to the ER at Bear River Hospital and the ER at Primary Children's Hospital in one night. That was a terrible night full of tests and pain and no sleep for mommy or daddy. And last of all we have had trouble with granulation tissue (abnormal scar tissue that bleeds a lot and on Landen was very sensitive) in one side of the tube. So we were taking him in every three days to have silver nitrate treatments that were supposed to burn the tissue off but it just got worse and worse. After 5 treatments the surgeon we have been seeing in Logan decided it was time to surgically remove it. So today we were once again in surgery. It went really well they not only cut the scar tissue off from the side of the tube but inside the hole that his tube goes in. Then the cauterized it the surgeon believes this will most likely stop it from growing back. It was a quick procedure they did in the OR under anesthesia. But despite all the problems and stress I would do it again in a heartbeat! Why? This is why...

Look how much healthier this boy looks! Looking back at pictures over the last seven weeks and you can just watch his body heal and grow. More then 3.5lbs in seven weeks. And it isn't just looks... Landen is more playful, has more energy, eats better, sleeps better, more attentive in school and just plane happier (if you can believe it he was pretty happy to begin with). Part of this also has to do with the steroid treatment we started him on at the same time. The combination has done wonders. Landen is stronger, he is walking more, sitting straighter, not shaking as much and participating more in therapy. He is a new child! I just want to cry every time I see him get up off the couch and go play it makes me happy. Its hard always knowing that eventually this disease is going to take the life out of my child as he digresses and eventually it will take his life. But I feel like I got hope back. Honestly he was on a downward slope before this even if I refused to admit it at the time. But in the last seven weeks he has rocketed upward and it gets better everyday. The last seven weeks have been hard stressful and so very tiring on me but yet I have hope. I see my little Landen moving forward... and as long as he is going froward... as long as I see improvement it I feel hope. Landen has a good life, he is happy and loving in ways only you who have met him can understand. Today in recovery he woke from the anesthesia and started attacking me with hugs and licks all over my face (yes kind of like an over excited puppy). He charmed the nurses and tried his best to escape the bed they had him on. He wanted to crawl and explore the room he was in. I can honestly say it was one of the most joyful experience to watch him so happy and energetic. Full of giggles and love. I love my little Landen and am so proud to be his mommy!

G-tube

Its been a week and a half since Landen's G-tube surgery and things are going really well. It's taken us a bit to get use to it though. We ran into some problems right off the bat because the pharmacy sent us the wrong formula (it was without fiber) and it caused Landen to get really backed up. We tried all the usual tricks most of which are very unpleasant for Landen. His tummy finally got so big and tight that we ended up taking him to the doctor who recommended a mineral oil enema (I had already given him a regular one). It took forever to find one and when I didn't even that didn't work. The following morning we woke up to POO! YEA!! since things finally "got moving" again we have not too many problems. We got the right formula and are pretty regular. We did break his feedings into smaller and more frequent because the poor baby just wasn't use to having a full tummy and when he started to eat orally again he was so stuffed an would puke a little bit. But I think we are to the point where his stomach stretching and soon enough he will be able to tolerate full feedings and I can go back to four times a day.

I will say although doing this has relieved the stress I constantly had about Landen not eating enough, it hasn't gotten easier. It still takes time. We are bolus feeding (or gravity feed) that means that I have to put everything aside to feed him. He seems to be getting a scheduled. His "breakfast" feeding and his "night time" feedings or the first and last of the day he usually refuses to eat any formula (he does eat a little real food) so I do a full feeding. During the day especially if Scotty is home the "in between" feedings he will drink. So most part he does well drinking the formula and if he doesn't drink it all he only leaves me 2 or less oz left to feed.

Landen is getting a g-tube

Last Wednesday we had several appointments at Primary Children's and we had to make some tough decisions for Landen. Landen has been struggling lately with several things and backsliding. He was no longer using  his walker and eating less and less. He spent most of his day laying on the couch or sitting in a chair he just was lethargic and weak. He struggled through therapy and wasn't able to participate much. Our PT had to do more passive therapies with him (therapies that he would benefit from even if he wasn't actively participating) and we were not even making it through a whole session. Its easy for a mom like me to make excuses, Landen is sick, Landen is stressed, Landen is not eating well, Landen is having a bad day... But it took talking to people at the GFPD conference to actually admit to myself how bad it had gotten that Landen had a bad day everyday. I couldn't think of once in the last six months where I took him to therapy without an excuse as to why it didn't go well today. I was constantly calling or sending notes to school to let them know Landen was having a bad dad and wasn't feeling well. I see him everyday his backward slide was gradual for me. But for our friends who only see him once a year it was actually very noticeable. I think the biggest shock for me was when at our consult with the physicians they read off their notes they had written about Landen the previous year, what he was doing physically and how he acted, all the little things they noticed.... it didn't even sound like the same child. Landen was weak and shaky and his eating habits sporadic. He had lost weight which was the one thing I did notice you could see it when you look at him all skin and bones to the point where he is always bruised along his spine and hips because there is not fat between him and the bones. He just couldn't gain anything back after loosing it. And I know there are some of you out their who think I just don't try hard enough to get him to eat I've sat by his high chair for hours doing everything I could to force a few bites. I have tried to syringe liquids only to have to take him to the hospital for dehydration. Even if I could get him to eat and drink this way its too much! I have so much on my plate I have Landen and all that comes with being his mommy. I have a energetic three year old who deserves his mommies attention just as much. I have a house and a husband who need my time. My father is in the hospital and my mother needs support. I'm tired! I'm so tired all the time!

When I took Landen to his five year well check with a list of recommendations written by the specialist at our medical conference he agreed we couldn't wait to address these issues. He called in as many favors as he could and got us appointments the next day at Primary Children's. It was literally a full and tiring day of nothing but appointments and tests. But we were able to address Landen's issues.

First his shaking and lack of energy... his physical step backwards. I have had Landen's adrenals tested every six moths for the past three years and we have seen some weird things. Its hard for doctors to treat our kids because they are so different and in most cases Landen is the only PBD patient they have ever seen or will ever see. The doctors at the GFPD conference were able to take these test result in combination with his physical and medical decline and confidently say he was suffering from adrenal insufficiency and needed to start a daily steroid that would help his body compensate. They were certain we would see a major difference in Landen in just a few days. We saw a doctor at Primary's who calculated dosage and wrote the prescription and started it. It has made a difference. I noticed less then 48 hours after starting the drug his intention tremors stopped. After two days his appetite picked up. He is getting off the couch and playing again. He is not content to just sit all the time. The best was therapy yesterday... Landen's PT was just amazed at him. He said he had NEVER seen Landen do so well. We not only made it through therapy with Landen begging for more without resorting to passive activities but we were able to do somethings the PT didn't even think Landen would every be able to do with his weakness and low energy. We usually end therapy with a very tired boy who cannot hardly hold his head let alone stop his shaking. But yesterday we started strong and ended strong. Landen worked harder then he had ever done before.

The second thing we were able to deal with was Landen's loss of weight and eating issues. This G-tube thing may seem like it has been a sudden thing but I have been thinking about it for a long time. Landen has struggled to eat from the day he was born. From me spending the first weeks of his life syringing milk into his mouth because he struggled to learn to eat and every "feeding step" along the way has been just hard. The thing most people don't realize is that he is not only fighting his low appetite and his body when it comes to eating but its also a sensory issue. Landen is deaf blind which most people don't realize the complications it brings with sensory issues. Landen wont touch sticky things or get his hands dirty in most cases. I had someone explain it to me once that his hands are his "seeing and hearing" and getting them dirty is overload just like someone shining too much light in your eyes. Its uncomfortable and makes it had to see anything. As he has gotten older he has wanted to be more independent and sometimes will refuse anything I will feed him and since he will only touch and feed himself a very few things it leaves him eating only goldfish for dinner some nights. Landen doesn't just struggle with touching different textures but eating them as well. There are some textures that he just doesn't like in his mouth. Again because he doesn't see or hear well his mouth is a major way for him to explore his world. He won't eat anything that he can't put the whole thing in his mouth. There are times when he wont eat anything that isn't crunchy or pureed. He is lazy when it comes to chewing. He can chew and swallow but he doesn't like to. He has many tastes he doesn't like. Most everything these days has to be hidden under ketchup or spaghetti sauce. And there are times when he is stressed or sick he just won't eat. After returning from Denver Landen didn't eat or drink for 6 DAYS! It was so stressful for us we were only able to get him to drink enough to keep him out of the hospital but he was still getting dehydrated and getting almost no nutrition. This is getting more and more common. So we have decided to go forward with the G-tube. this doesn't mean Landen will stop eating. In fact we will still encourage him to eat as much as possible. We will just be supplementing with the G-tube and on days he doesn't eat we can give him more. It will help him to finally put on some weight. Landen is about 6-8 lbs off of what would be considered a healthy weight for his height and the poor kid doesn't even gain a whole pound a year. In fact this year he lost 1.5 lbs and gained two inches. I mentioned before that his appetite has picked up since starting the new med. That is true and I have stressed and cried over this for the last few days wondering if I made the right decision. But I know Landen and am not sure how long this eating will last. Not only that but he still doesn't hit a high enough calorie count without supplement which has been pediasure for the last 9 months. And even then he has managed to loose weight. Also because of his eating habits and aversions he doesn't get a well balanced diet. We miss out on a lot of good nutrition because he is so picky.

So that is it I feel like we are on the right road for Landen to get him back on track. Landen is going into surgery tomorrow Thursday the 22nd. Yes its that soon. He will have the surgery in the morning and be in the hospital for 2 days for recovery. Pray for my little Landen that things will go well and that he will recover quickly.

Landen resting with daddy at the hospital

Landen exhausted after a whole day
at the hospital 

Happy Birthday My Sweet Little Landen

Landen is FIVE! What a miracle he is five years old. We are so happy to have him day by day. This we feel like is a big milestone for our little guy. We wanted to host a big celebration with all our family and friends but my dads accident has kind of put everything on hold. But we will be celebrating soon. As soon as we feel Landen and Mommy are up to it we will be putting something together. It will probably be something low key just a bar-b-que and cake. But we can't let this occasion go by without celebrating this amazing boy. Every Birthday... Every Day we have with him is a gift for us. We live on borrowed time and Landen is doing so well. We hope to see him up and moving even more in the next few weeks. We want our family and friends to know how precious this boy is to us.

Little Landen hasn't grown much over the last year but so much has changed. He still loves to smile and snuggle. He is the sweetest little snuggle bug ever. His personality is so laid back and relaxed it puts me at ease. He is happy happy happy! Constant smiles, laughs and what we call "Landen hands" or "Muppet hands". This is when he throws his head back and waves his hands in the are in the most excited motion you can imagine. I love love love love love my little boy. Life with him is a treat. Our little guy goes through so much and his body is always fighting him but he fights back. Even when his body gives him low energy and he can't do much he will lay on the couch and giggle and smile.

He is daddy's little boy. He loves his daddy so much. Daddy is his favorite person. He loves mommy too but mostly when daddy isn't there.

I love you so much Landen I'm so proud of every accomplishment you make.

Happy Birthday My Sweet Little Landen

2013 GFPD Conference

We look forward to the GFPD conference all year long. This year was a little difficult with my dad in the hospital and our family needing us but we also know what going to this conference means for Landen. It worked out that we went right as dad was getting transferred to Denver. My mom was going to come with us so we had already paid for her registration but for obvious reasons she couldn't go.. So we brought along my niece Tori. What a blessing she was she was able to help with the kids both on the two day car ride up and at the conference. As always we learned a lot from the medical/scientific speakers, and even more from the other families. We also received help and support from the medical staff who took the time to sit down with me and Landen.

The best part of these conferences are the family connections we make. Getting to know parents who are in all stages of this disease. We have parents whos children have just been diagnosed, parents like me with young children still trying to find a balance, parents who are experienced in the dad to day medical and emotional ins and outs of this disease and parents of angels. Everyone of them brings so much to our table. I love every part of it.

We had lots of fun time too. We spent an afternoon at the zoo, lots of swimming, we had a parents night out, we had dinner and swimming at the Lincoln Country Club, had dinner and fun at the Lincoln Children's Museum (braydens favorite). But I have to say my favorite was just spending time with the other moms. The support and advice and fun we have their are a unique thing. 

The 2013 GFPD Video 

Many of our wonderful families and our sweet children.

Pictures

GFPD family tree

Tori and Brayden climbing trees at the rest stop

♥ My boys ♥

Landen rode a horse at the zoo

Tori showing Brayden all about the bugs

 Landen ♥ Daddy

 As always amazing volunteers in the children s room

 I can't tell you how special these children are!

♥ Tracy getting her Landen time ♥

 Landen

 Balloon release

 Everyone loves a ball pit

 Always miss our Ezra friend...

Her family is the first we ever met with this disease

they live in Arizona miss them so much!

The Children's Museum was so much fun!

Dad

This has been a hard few months for me and my family. My dad was in a accident July 29th at work. I have been very busy between him and my own family. We live in my parents basement so not having PaPa around has been a big adjustment for all of us especially Brayden. He spent almost a month in the ICU at McKayDee hospital in Ogden. And is currently in Craig Hospital in Denver CO. This hospital has been amazing for my dad though we miss him. I'm adding a link to his blog that my older sister runs for information.

http://timsjourneytorecovery.blogspot.com/

We got to spend a week up with him in Denver after our GFPD conference in Nebraska.