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