"Not flesh of my flesh, Nor bone of my bone, But still miraculously my own. Never forget for a single minute,
You didn't grow under my heart - but in it"

Monday, September 19, 2011

Frustrated

I am not frustrated at anyone but myself. Noah has some awesome doctors, but all roads still lead to possible surgery and the surgery is one that he should have had at 6m old with the gtube placement but they said was unnecessary.

After talking to Dr Whitney, Noah's amazing GI, I feel better. We talked about the drug Pulm suggested that would induce hunger and she said the same as Dr. Sparry his awesome ST at the hosp. They both agreed (which is probably why I didnt get a Rx for it from Pulm) that it would be hurtful and mean to give Noah a drug to induce hunger and him not be able to eat.

I poured out my heart and honest feelings to Dr. Whitney. I told her I caused this. If its reflux and he wasnt on reflux meds because we had determined it wasnt reflux in Pgh and the meds were harming him, then it was all my fault! She said, "Its not your fault. Believe me, I would be honest and tell you if you caused this. GI is constantly changing and I dont believe for one second that Noah has had this exact problem before." I let out a huge sigh of relief. But part of me is still uneasy. I dont want to let anyone down, especially Noah. I dont like the idea of more surgeries, more meds, more side effects. Its all a lot to process. I had the child who was doing fantastic. Now regressing.

The regression is probably the hardest thing for me to deal with. When Noah was not eating and not walking and not meeting milestones and vomiting all day everyday it was what it was. I was okay with that I guess because it wasnt any different. When he met a new milestone we celebrated even more. It would all work out. But having him almost ready to get rid of the gtube to go completely back by like a year, that...that was hard. Dont get me wrong and think I am complaining. I am not. I have my child here with me and I dont care about the rest as long as he is here with me. I am just saying that is honestly a hard pill to swallow.

I do want to share that the therapist say that Noah's mind is all there(doesnt matter to us but good to know). They are amazed all that he understands. This makes me smile big! People always assume that kids with trisomys are dumb or can't understand anything. Noah is here to prove that stereotype wrong. When he is doing something he knows he isnt suppose to he gives us a look and does it anyway. He understands which remote plays his favorite song. He knows how to turn things on and off. He understands when we tell him no and when we talk to him. He is super smart :) Can you tell we are a little proud of our boy.

Anyways I have a lot to get done before tomorrow. But will update as soon as I know something. Please pray that they figure out what is causing this.

Be blessed

No comments:

Post a Comment