I apologize for my last post. I didn't mean for it to turn out like it did. Just had boat loads of anxiety going in to this week and to be honest, not much improvement expected until after genetics. But thank you for all the kind words and prayers.
Anywho, little man had a swallow study on Monday after making a quick stop to see Trent and Tiff for another adjustment and some cranial/sacral.
Jen walked in, as her nomal cheery self and took one look at me and said...what's wrong mom? Explained I was just trying to keep my heart from pounding out of my chest. I was really nervous, Chris took it like an old pro! He just sat there and let Jen hand him things and he ate and drank them accordingly. It greatly helped that he was familiar with Jen and I could sit back and try to understand what was going on, on the screen.
In November, if you remember, he aspirated EVERYTHING. Solids, liquids, whatever...everything. After all the therapy and altering things here, Monday showed SIGNIFICANT improvement, accroding to the radiologist. Jen reassured me this morning during therapy, that before he was aspirating everything and now, all he is aspirating is the nectar thick liquids and the thin. He has less residual in his mouth and on his tongue and isn't pocketing things like he was before. He is handling his boluses better and is taking from a sippy quite nicely. Huge, HUGE change from November!!!
Jen was excited, I however, was still skeptical. The part I struggle with is the why? What is going on, that is causing this problem. I'm not sure if I was relieved that the study was better or worried about the unknown, but in the middle of the main lobby, I broke down crying like a baby. Jen reassured me that she feels he is more stable now that he ever has been. We made plans to talk at therapy this a.m.
Therapy was bittersweet today. Chris was exhausted and didn't want to do it and we didn't get to the numbers we normally do. Meanwhile, Jen and I discussed, continuing vs putting therapy on hold. She again reassured me that because of the swallow study she is confident he will do fine until I decide to start up again. She pointed out that we are learning his triggers...i.e. ear infection, sinus congestion, drinking Matt's 7 up...and therefore know how to prevent or treat to help his swallowing. Because of this, the plan was made to put therapy on hold till this summer.
My other question I had was when he was aspirating the honey thick liquids we still went with it and now we are tolerating ok. Why couldn't we do this with the nectar. She said that his boluses with the nectar were too large and she wasn't comfortable with them enough to send me home and do it on my own. This means, when we start therapy again this summer, we will introduce nectar thick liquids. Exciting stuff let me tell you.
The other part of the bittersweet moment at therapy, was saying good-bye to a good friend. Yes, we will text back and forth, but Jen has become a warrior for me and a person who helps me think through things and makes me confident in my choices for him, whether they be foods or doctors, not to mention, trully cares for Chris. I don't know if I have mentioned it before, but Jen's daughter has some neurological issues, so in a way, we could relate. Not to mention she's a Dr. Kronberg fan, who has now been dubbed K-dog. In December, I knew we wouldn't be gone for long, so it wasn't as big of a deal, but this time, my stomach is telling me different.
Saying good-bye was hard and Jen and I cried as we walked out, but it wasn't for our worries of Chris for once, but of putting a friendship on hold.
We also got to see Dr. Prestridge today and I'm always very impressed by her. I like her A LOT! Besides being very surprised...moreso startled by how much milk Chris drinks...she was very happy with the progress we are making! We have to go back and see her monthly, give or take a week, but all she could do was smile at him! Then again, he is pretty darn cute! ;)
So we are home. Our trips to Omaha are not over, I think I am still down there every other week for doctor appointments for Chris and possibly just a day or two, so FAR better than every week for 3 days. Part of me is not completely convinced we will make it to summer, but it's a good goal to set.
It will be good to have all 5 of us home this weekend and me not have to work. We need time together. I took Matt with me this week and he was so funny. He needed new shoes so we had to try on every pair in a 1 or 1.5 and then take a lap around the store to see which one he was the fastest in. Why do I need a daughter when I have a shopper in Matt. He loves to window gaze. Plus he informed me that when he grew up, he was going to be a singer and buy a house!
It was good for Andrew to have one-on-one time too. Michelle stated that he was beaming last night to just have things on his own!
I know I will be excited about the findings from this week. I'm pretty sure I just have to get past the exhaustion. Thanks again for all the prayers. We are getting there...
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