Sunday, August 4, 2013

Busy bee, Busy Bill

We are unwinding from a fun weekend with friends and family.  We plan on relaxing rest of the night tonight, well I do I hope Lil Bill has the same plans.  I feel like I have to mentally prepare myself for the busy week we are going to have.  We have multiple appointments every week but this week we have more than our usual amount.

Every Monday we have physical therapy and every Tuesday we have occupational therapy, so every week they are given appointments.  The past week Lil Bill has been doing so well with tummy time, I took lots of pictures to show them.  Both his therapists are a great support for us.  Here is one of the pictures, he is getting so much better at tummy time and he loves it, he gets excited and laughs during it.

This week also on Tuesday we have a meeting with our child development case worker, statewide services for the deaf and hard of hearing, and the school district.  Our child development case worker is through the state's early intervention program.  Every state has one by law, to make sure that any child that qualifies for services can receive what they need.  We receive our physical therapy through them, our occupational therapy through them, and hopefully soon will be receiving speech and feeding therapy through them.  Their program as well as A.I. and CHOP has waiting lists for both feeding and speech.  It is frustrating that Lil Bill can't get the services he needs but also sad that so many children need them.  We also see our neurologist through the Child Development program.  So they really do a lot for children with delays, I am very grateful for them.

After hearing about Lil Bill's hearing loss and hearing disorder, auditory neuropathy spectrum disorder (I will get around to explaining what this means later I promise), our case worker wanted to get us acquainted with additional services that will help Lil Bill.  We all met at A.I. hospital a couple weeks ago when we were impatient but we are meeting again to come up with a more updated Individualized Family Service Plan.

Wednesday we are going to the Pulmonologist   I am sure we will know after that appointment what we are going to do about Lil Bill's sleep apnea.  Since his pulmonologist is the one who put him on the NJ tube I am hoping he will give us guidance on when to move it back to an NG tube, and if not we see a new GI doctor Thursday.  So I am sure by the end of the week at least we will know what is going to happen with the tube.  The 18 hour continuous feeds are very hard on all of us, Lil Bill included so I am hoping we can change that schedule.  Plus now that he is able to eat by mouth, its hard to find times to try because of his feeding schedule.  Lately we have been doing two bottles and one puree during his 6 hour feeding break.  He has been doing so well!! Especially with the purees.

I tried making a home made avocado puree for him, he was not a fan at all.  So we tried an apple puree, which he loved, and a prune puree which to my surprised he loved so much! He got so upset when we were done eating, as you can see here.

I will be sure to update what happens with all these appointments!  OH BY THE WAY, we are getting hearing aids August 27th! Just in time for Lil Bill's first birthday on August 31st! What better gift for a birthday than possibly being able to hear more??


  1. So glad we have some adorable pictures to accompany this fantastic blog -- even if Bill Bill isn't enjoying them so much you all, Aunt Sarah :)

  2. He's so precious! God bless you momma, you're a rock star! And God bless Bill, he's soo beautiful and such a trooper!