Jaxson

Hello Everyone,
I have wanted to write this post for awhile but didn't know where to start so I am just going to start from the beginning and go from there. Sorry about the poor grammar in advance. On August 1, 2008 a handsome little boy named Jaxson Noah was born into this world. An average 6 lbs 5oz but little did I know that he was far from an average little guy. When a woman gets pregnant most of the time having a special needs child doesn't cross her mind. She thinks not me it wouldn't happen to me. I did everything right went to my doctor appointments, took my vitamins, didn't smoke,drink or do drugs. I barely even drank caffeine. My pregnancy was pretty average except for a weird itchy rash I got. That ended up going away after I had him. I wanted a vaginal birth. I had Skylar vaginally and it wasn't that bad. I found out that Jax was foot breach. It would have been detrimental to him and me if I had him vaginally. So I ended up having to have him by c section. I was in tears when I found out, not only because I didn't want to have a c section but also I was scared that if I went into labor it would put Jaxson in danger. The doctor scheduled the c section before my due date so I wouldn't go into labor before the surgery. He scored low on the Apgar scale due to his coloring. But I guess that is typically normal for csection babies. Two days after he was born I was in the bathroom taking a shower for the first time in days and I had him in the room with me in his bassinet. I hear the nurses freaking out and saying hes turning blue Oxygen stat! For some reason he stopped breathing. I flew out of the shower.It was only for a few seconds but it was so scary. We ended up having to stay at the hospital a few days longer because he couldn't keep his body temperature up. They had to bundle him up and put him under the heat lamp until his body temperature was brought up to normal again. The first few weeks he had issues with keeping his temperature up. A traumatic event happened to Jaxson when he was little. One of my exes broke Jaxson's arm. Long story short he ended up being charged with endangering the welfare of a child under 6 and another charge that I cant remember. Due to this event we had to see a lot of Drs. One of them was the Geneticist. We have been seeing her since he was a month old but we haven't found any conclusive results as to why Jaxson has all the issues he does. Anyway back on track.
When Jaxson was about 6 months old I noticed that he would stare off into space. I thought that this was weird. I spoke with his pediatrician about it. He said that he may just be getting sleepy. But I kept and eye on him after that. I noticed that when he was in his dazed state I could wave my hand in front of his face and he wouldn't even blink. I was like this definitely isn't right. He was referred to a neurologist and found out that he was having seizures,mostly at night.  He was later diagnosed with seizure disorder. We tried a few different meds. One made him throw up, one made him super aggressive and the last one is the one he is on now. It has been about 2 years hes been on it and it has worked very well. The same week he had the extended EEG done he also got his Gtube (feeding tube) put in. The reason he had to have a feeding tube placed was to help him gain weight. He was deemed failure to thrive due to his slow growth. He was referred to a gastroenterologist. At that point we weren't aware that he had a growth hormone deficiency. We had tried increasing his calories but he kept gaging and throwing up. So the dr decided it was a good idea for him to have a gtube. The dr said one yr max he will have it LOL! After being on the feeding tube for about 6  months he had gained weight but didn't gain anything in height. He ended up getting referred to a endocrinologist where they ran a battery of tests we found out that he has low growth hormone deficiency. The dr gave me a choice to start on growth hormone shots every night or just monitor Jaxson's growth and see if he grows on his own.The dr said that at the rate Jaxson was growing at he would have been about 3'5 as a full grown adult. He is a little over 3'5 now and hes small for his age. 
So everytime Jaxson got sick we would end up at the drs or in the hospital because he would have a really hard time breathing. He got diagnosed with asthma and now has a inhaler and nebulizer. The numerous times he got sick his ears would be bothering him. He has partial hearing lost in his left ear and had to wear a hearing aide when he was younger. He is on his 3rd set of tubes and his hearing seems to be getting better the older he gets. When he was younger I found out that he also had astigmatisms in his eyes and had to wear glasses for about a year. He had to go back to get his vision tested every 6 months to see if it had changed and finally after about a year and a half the astigmatisms had gone away and he didn't need glasses anymore. Since he had glasses when he was 2 he hasn't needed them since which is a good thing he has enough going on. When he was around 1 he was at daycare while I was working. I got a call from the daycare...Ummm is Jaxson allergic to pineapple? Not that I know of. Well he just had pineapple and his lips are swollen and he's cranky. I flew home and saw how terrible he looked. I called the Dr. and they told me to give him a antihistamine we later had to get an epi pen which he still has. I thought he was only allergic to pineapple but found out that he was also allergic to all citrus. This made for school setting to be really difficult. I had to make sure that he wasn't around it at all or that it wasn't in any of his food.
Even though he had a lot of testing done nothing explained a lot of his odd behaviors like waving his hand or other objects in front of his face over and over sometimes for an hour or more at a time. He also has a major fixation with straws. He prefers to have a straw over any other toy most of the time.  In 2011 his Developmentalist diagnosed him with Autism. I always had a feeling that he was autistic but wasn't exactly sure until the Dr. officially diagnosed him.
Due to him being on growth hormone and having asthma and also sleep apnea he has to get sleep studies every 6 months. He has had to get there for the past 2 years. Every time it is getting harder and harder to get him to stay still and keep all the wires on. Good news though, last time he had one it showed that his sleep apnea had gotten better. But that doesn't mean he doesn't need the sleep studies it just means instead of one every 6 months is once a year.
Jaxson has had numerous ongoing issues with eating. He is limited to what he eats cause he tends to gag or throw up if the food is too textured. Everyone including school and his at home workers thought that he was hitting the spoon away and spitting because he was being a brat. But come to find out it wasn't purely behavioral it is also cause he was recently diagnosed with EOE which is short for Eosinophilic Esophagitis. This means that eosinophils swell in the throat and make it uncomfortable to swallow. Here is a link for more information

http://www.eosinophilicesophagitishome.org/

The GI had ordered a endoscopy where they took biopsies of polyps found in Jaxson's throat. They came back positive for EOE. The GI put him on an oral steroid. The steroid seemed to help for a short time but now he is on an elimination diet to see if that will help. He cant have soy, dairy, wheat, eggs, corn, fish, shellfish, nuts, citrus and pineapple. This really limits what he can have. Plus he is already limited because of his lack of ability to handle very textured foods.

The reason I have written this post is because most people have no idea what I deal with as far as taking care of Jaxson. I may not work but I am always busy with stuff involving Jaxson. My life definitely didn't turn out the way I wanted it to. I love my kids no doubt about that but sometimes I wish things had turned out differently.