Today we went to the hospital for Noah's GI appointment. He lost an ounce from 2 weeks ago. Bummer. He was doing so well. I took all 5 kids with me and again they call us out of the huge kid friendly fun filled waiting area and put us in a 9x9 cell to sit and stew for what seemed like forever. With nothing for the kids to do they quickly found annoying noises to make. Yay!
Finally, a student doctor came in and examined Noah. First though she said I am assuming one of these is Noah. Um yeah genius its the only boy in this room. What did she think I came in and left Noah at home? Then, while I was answering a question she was ask about him she yawned TWICE! So sorry my life bores you oh so much. She examined him and then went to find the doctor. She must have stopped for a nap along the way seeing as she was so tired. The doctor comes in and barely even acknowledges Noah.
The doctor then proceeds to tell me that for now she will agree with my decision to not tube my son. BUT she says he will be tubed its inevitable. Are you kidding me lady?! Why does he need tubed? He is growing, slowly, but still he is. Is it just because he has Trisomy that they think he needs a tube. My son is not defined by his disorder. He is not Trisomy 8q2's poster child he is Noah James Elliot. He is fearfully and wonderfully made and if my God is for us then you can ever stop us and if our God is with us then who can stand against us?! (I love that song) If God wants Noah to be tube free he will be! If not, then he will have a tube, but I really dont see the reasoning and before you ask, no they gave me no reasons as to why they say it is inevitable.
Her and her student begin to argue. The student is young and not hardened or swayed by money yet. She says my son looks right on target and so beautiful. The doctor says YOU ARE WRONG! He is not on target. Look at his head, does that look like a child who is 4 months old? He is weak in his neck. Ok lady first off my son is 5 months old not 4, second babies grow and develop at their own pace. Then the doctor looks at me and says, "have you ever had any other children?" I look at her perplexed..is she serious? I look at the 4 tiny faces behind me and I point and say Yeah only all of them. C'mon!
She says Noah needs a neurologist and fast she thinks he has a problem with his brain. He just saw a neurologist who said he doesnt need a neurologist. She said he was wrong. Ok, yeah. Ya know if my son didnt have Trisomy would they be so quick to judge that there is something wrong with his brain. I swear people just keep blaming all his "problems" on Trisomy. I appreciate the constant reminders that he may stop developing at any given moment and spend the rest of his life at that age but today...today I just dont want to hear what can happen! Let's focus on him now at 5 months old. None of us are guaranteed tomorrow and God says not to worry about tomorrow anyways. So just examine my son today and tell me today how at this very moment he is doing.
The doctor handed another prescription out for something she thinks he maybe could use but didnt examine him. She tells me that he needs to be eating 2-3 jars of baby food a day at least but can do more if he will. Ok..seriously. We go to see her because he doesnt eat and she thinks that I am going to open a jar of organic sweet potatoes and magically he will eat 3 jars of it. I have 5 children. It takes on a good day 30 minutes to feed Noah, on a good day I said. Now she wants me to get 3 jars of baby food in him too. HA! Sorry girls Mommy cant get you lunch because I am feeding Noah for 3 hours!
After a 2 hours visit that was just so swell we went and bought some baby food. We decided to try it. He took the first spoonful in, didnt know what to do and out it came. I put it back in and back out it went. This went on for sometime. I got frustrated and gave the spoon to Paul and it went on for a good bit more. One spoonful is all he had and really I am not sure he even digested any of that. He isnt ready and really what do I care what she thinks? She doesnt even want to see him for 6 months. If his health was such a huge issue to warrant a feeding tube and more more more calories and all this food wouldnt she want to see him in a few weeks..nope.
Noah has a ton of therapist here weekly and I am his mother. We can decide what to do. I need to start making choices for him that are all me and Paul. So many people have so many things they want for us to do with Noah. I have to think would I allow them to make me do something I know he isnt ready for if it were one of the girls? If I birthed him would I be so quick to consulate 10 people before feeding him using a glass bottle? He is my son. I am his mother I need to find my instincts. I need to understand that all these extra people will be in our life for just a short time but its him and me forever and I just need to calmly listen to the Holy Spirit and remember I do not have to do everything everyone says.
I do like it at the hospital though. Most of the doctors are amazing. But what I really like is that I feel like I can look at anyone there and not feel so alone. I know Noah doesnt seem like a child with Special needs when we are out and about but there are some issues and sometimes I just want someone to understand what that is like. I dont wish it on any child or parent just wanting someone to understand. Then like today I hear that voice inside saying You chose this! You have no right to complain or feel alone! This was all on you! I understand that I do. God ask me to leap and I did, but some days its tough. Especially recently. Up until this point Noah is thriving doing everything a "normal" baby does with very few exceptions, but month 6 is coming. Month 6 babies are sitting on their own. I dont think he will. Do I think he ever will, sure, but it may bot be until he is older maybe much older. I dont know what to expect and most days I dont care if he ever sits but days like today I think next month will be the month we will know he really is delayed, he really does have something that makes him different and thats ok..really it is...its just I dunno. Does anyone understand?
Ok well its late, i'm tired and probably have not made any sense to anyone. I should just hit delete.