Oh what a week

We are here at the RMH and finally got into a routine. That is important with any aspect of my childs life, especially feeding.

Here is what happened. First our sound machine quit making the rain noise he has been sleeping by for a year. Then they were giving him a bite and he turned his head suddenly and his gum was bruised. THEN They changed the oral motor exercises and tools. We had a patch of bad days. He was tired and hurting and did not want anyone in his personal space.

We went in to see the nurse and OT and a developed game plan. I took off early and got the sound machine, I gave him something for gum pain and we changed the oral motor exercises yet again. But it all came together!

Here are the exercises that worked.

1. using a clean finger, I rub his gums all the way around from the back of his jaw to the other side in one motion and then repeat on the bottom. We do this for 5 repitions counting together. I learned something from bushing his teeth!

2. Then we use the z vibe nuk end (not turned on at this time and not a nuk brush because they are using that to feed) and place it on the side of his tongue and sroke lightly to motivate him to move it to the side...I repeat on the other side. We do this a couple of times. I use the z vibe nuk to stoke the center of his tongue to make a valley. I do this a few times.

3. Next we use the z vibe nuk to have him chew in all five quadrants of his mouth. back, side, front, other side and other back. I have him chomp on it five times in each place and he does 5 reps of that.

4. Finally I turn on the z vibe and I stroke the center of his tongue gently and then stroke the roof of his mouth. We have to make a game of this or it is over. I try to do this five times.

After getting his rain sounds playing he slept better and with pain under control he was a happy boy. His feeding placement resulted in swallows and the oral exercises seemed to wake up his mouth and tongue. The kid acutally SLURPPED! He was sucking the food back in his mouth today! I was so happy!

They set our goals low ( as far as I am concerned) and I was dismayed that they only felt he could get 30% if his calories from eating. Today he ate 103 grams and I have to do some figuring but I think at 1.3 calories per gram he almost reached that. We are taking baby steps but this was a boy who would not swallow! I bet we hit almost 20%.

To figure how many grams he is eating they pre weigh the foods. Afterwards they weigh the napkins for food expels and calculate how much he consumed.

I wanted to add that drooling is reduced and he has increased verbal skills. He can smack his lips now and makes the moo sound. Big deal to us!

Thanks to everyone who are sending donations to the RMH in our behalf. I really appreciate everyone. This is a long time to be away from home and I am so thankful for the support!