Wednesday, June 11, 2008

Update of William's Feedings

It has been awhile since I have updated on how Will is feeding these days. So here is the update...

We went to GI (Dr. Brady at St. John's Mercy, Love her!!) on Tuesday. Will is weighing in at 19.5 pounds! Woot Woot! Go Will, Go Will! (insert mental picture of me doing a happy dance!!)He only has to gain a pound before we can turn his car seat forward facing!! That is going to be HUGE!! Will is almost two (in August) and he still has to be rear facing because he doesn't weigh the 20 pound minimum. Most kiddos get to go forward facing when they turn 1 year old.

We are still tube feeding William three times a day. He gets four ounces of formula (pediasure) mixed with applesauce (about an ounce) and one tablespoon of rice cereal in the tube three times a day. We use the cereal and applesauce because making the formula thicker seems to help it stay down (less vomiting). So he is tubed 12 ounces a day and he drinks the other 12 ounces. He is still taking a bottle (which I can't stand!) but he just hasn't gotten the whole sippy cup thing.

Each time that we tube feed Will we offer him food by mouth. We want him to associate the "full" feeling with eating food. He has never had any oral aversions (he will put anything in his mouth, seriously: EVERYTHING). So he has no problems putting the food into his mouth, he just can't seem to swallow it. He has been working with his speech therapist and his occupational therapist for over a year on trying to swallow.

At our GI appointment on Tuesday with Dr. Brady (have I mentioned that I LOVE her!??) I talked with her about Will's lack of swallowing skills and she brought up the possibility of a therapy called Vital Stim. VitalStim Therapy uses small electrical currents to stimulate the muscles responsible for swallowing. At the same time, trained specialists help patients "re-educate" their muscles through rehabilitation therapy. I had actually heard of this therapy before, Natalie has also had this therapy and it has worked wonders for her. I think that it may be what Will needs to get him eating real food and away from using his tube so much.

Children's Hospital has an OT that does the therapy, but I am not sure what her availability will be. There is also a women that comes to the patients home but she is located in Missouri so I am not sure that she will cross the river for us. I will have to start doing my research. I also have to make sure that our insurance will cover it. And we all know how fun that is going to be!

I am optimistic about the therapy, I have a good feeling that it will work. I just have to do the leg work first. I am very pleased about Will's weight gain. He gained over a pound in a month, and he has NEVER done that before! He is vomiting less, praise the Lord! He is vomiting, on average, twice a week (which is way better than every feed like in the past).

So that is it! Your Will Feeding Update!


Cindy said...

That's great news about the weight gain and lack of vomiting. I remember how depressing the vomiting is...especially when we went out in the car, Natalie vomited, until I thickened her formula.

I have more thoughts on VitalStim that I'll send to you privately.

Jessica mommy to Alex/ RTS said...

I hate the car vomit too!
Will is doing great, and 12 oz by bottle is awesome, even though you dont want him to have a bottle, its so great that he is able to take one!!!!!
I love Will and the dog pictures!

Jacqui and Lloyd said...

Well done Will and Mom! We celebrate this step forward with you. I know that we fall short of throwing a party everytime our Matt puts on weight. I pray that this small victory energisers you for the journey ahead.