Day Six

Daniel was not a happy camper early this morning. When we woke I told him we were going to see Cynthia and Carter (his feeding therapists) and he got really upset and started crying. I told him we had to go and he seemed to adjust but when we got there the 1st feeding went bad. He remembered all the excercises and other stuff but there was a lot of gagging. They asked that I have his throat checked by the doctor to make sure there wasn't any irritation. The doc checked and all was fine so they had to adjust the protocol a little. He was keeping his mouth open a little too long and they thought that was what was causing him to gag. They changed to procedure a little and told him to shut his mouth a little sooner than they had been doing and that seemed to do the trick. His 2nd, 3rd and 4th feedings went much better and the gagging got better and better by the end of the day. I talked with the team a little today (we will have a formal conference tomorrow) and they said that he is doing great! Most kids will take until the end of week 2 to even open their mouths so Daniel is ahead of the ballgame. They know that I am a data driven person so they told me that Daniel will most likely be working on his tongue control for the next week or so. Estimated time is that it will probably take him until he end of next week to get control of his tongue and clean the food off his spoon each and every time it is presented. Once he gets the hang of cleaning the spoon and control of his tongue, then they will work on volume of food. They need to get the technique down with him before they can present more food. This was good to know because I had no idea how hard it would be to watch him and wonder when he was going to get more food! It gave me a better understanding of all he needs to learn so then we can work on the volume of food.

Also, they told me that Monday's are always very hard on the kids. They had a weekend off because we aren't allowed to feed them and then they have to come back here and work again. So, I'll have to keep that in mind the next couple of weeks.

I'm doing fine. I didn't realize how hard this would be for me too but it is. I'll get adjusted but you all know that its hard for me to sit on the sidelines - kwim? I want to help but at this point, it would probably hinder Daniel's progress so I just need to sit back and watch and learn.

Abi is doing great! She got to go home and spend some time with just her and daddy. They had a great time and all went very well. Daddy said they had a great Valentine's day together and got to play lots of games and watch lots of movies together.

Well, I'm off to get Daniel to bed as he is exhausted. I'll update tomorrow. Please continue to keep Daniel in your thoughts and your fingers crossed for him.

-Angela-