Quick Everett Update

So we've been to three specialists in a week. We went to pulmonary since he is retracting when he breathes. They said it's structural so they sent us to ENT. They said it's his reflux so we went to GI. They don't know what causes his breathing and gave pointless information about reflux. Things I already know. He wanted me to add rice cereal to his bottle. I told him I thought of that, but am uncomfortable since he silently aspirates. He said lets do a swallow study. We did a swallow study  yesterday. She gave me the amount that will work in the formula (since you can't thicken breast milk because the enzymes in the breast milk break down the cereal). She neglected to let it sit, it thickens with time. So, when I got home and did it myself it wouldn't come out of the nipple at all because it got too thick. I called her. She said thickening his formula probably won't help his reflux anyway. FOURTH waste of time and money, not to mention the barium they put in his milk makes him constipated so he suffers from that and I hate the unnecessary radiation. I get the run around no matter where I go. It's all a huge waste of our time. I'm so frustrated. I'm sending in stool samples per GI's request. After that I'm done. I'm tired, Everett's sick of it all too. We are at the doctor every other day getting pushed to the next person, getting nowhere.

His reflux is horrible. He's so uncomfortable. He's such a happy baby, his reflux is the only thing that gets to him. He's up all night with gas. No more sleeping long hours. :/ He'll eat every 3 and after 1am he'll be moaning and groaning needing help getting gas out and getting back to sleep. Poor baby.

We went to Early Steps which is a program that will follow Everett until he is 3. They asked me a million questions, some were, "Does he old his own bottle? Does he say his vowel sounds?" Um...really people? Then they did assessments on him and failed him. He didn't do much of what he usually does and the lady (in my opinion) rushed through it. She was trying to get him to follow a light and Clara was crying in the corner, it was chaos, so many distractions. She was moving it very quickly and she thinks he can't see. They failed him on 3 of the 5 categories. Somehow I "forgot" the paper there so I don't even know what the categories are, nor do I care. She called and said she'd mail it, I told her I didn't need it. I left in tears, we all did. Pah. Clara was tired, it was nap time, Everett was sick of hearing he's not doing this and he's not doing that, as was I. Although I know better than to read into their negativity, it was a tough day. I wasn't thinking we would face the "he's not doing this, he's not doing that" to that extreme until maybe, school. One of the ladies thinks he can't see so she's sending us to an ophthalmologist. I think he can see, but now she has me worried so of course I'm going to. He also has a quiver, I think his eye muscles just need to strengthen still but she freaked me out. She also thinks he doesn't hear well since he didn't turn his head when she said his name. I just don't think he's there yet, I'm not sure he should be. I am positive he hears, he passed his hearing screening in the hospital. I understand eyes and ears are essential for learning and with Down syndrome tendencies we need to watch those close, but I also don't think someone who has seen him for 10 minutes should react like that. They don't ask me about his history. When we left the hospital they said to consider him a month younger than his actual age since he was so sick for the first month and missed the opportunity to learn and grow like a healthy baby. I think he is pretty close to being his actual age. He does most of the milestones a typical three month old would most of the time at home. I think he's doing great, not only for his age, but for being so sick and also for having Down syndrome. Needless to say, someone from early steps will be coming into our home once a week to help him reach his milestones. I'll give it a go, the more help the better, if he needs it or not. So long as it's not the lady doing this assessment, I might have a few choice words for her if I see her face ever again. You'd think a program intended on helping children might create a warm atmosphere for family new to struggles.

I'm proud of you Everett, you're doing great! Mommy is trying to get to the bottom of everything for you, we'll get there...one day. I think hibernating at home might do us better than getting nowhere with doctors. I'm sorry I'm dragging you all over town. I love you. You're a great sport.