Where Does the Time Go

I can't believe Christmas is this week! We are headed to Chicago on Wednesday. Nicholas, Grandma T, and I are driving. Mark is going to fly up there and drive back home with me. Hopefully Nicholas will do well during the long car ride.

He went to the Audiologist last Monday for a hearing check up. His implant is at 80% volume right now. He goes back in six months. She changed the settings on his processor and now it doesn't turn off on its own. If we took the coil off his head the processor used to turn off after about a minute to save the batteries. I thought something was wrong with it so I called Cochlear and they were going to send us a new one. We put his back up one on and it was doing the same thing. I called Cochlear again and they had me sync the processor with the remote and were able to see what was going on with it. His audiologist accidentally put it on advanced settings instead of simple. It works fine we just have to turn it off on our own. No big deal but i think we will go through batteries faster since Nick likes to rip it off his head and if we don't see him do it it will still be turned on draining the batteries.

We heard back from the GI doctor about his stool sample. There was no blood in his stool but it was very acidic. He said that means he isn't absorbing something. He wants to do another GI scope to see if something is going on with the small bowel. That is scheduled for Dec. 30. He will have to be sedated for it.

He finally got his first Synagis shot last Friday. His appointment was Oct. 22 but it took two months for the doctor's office to get someone at the insurance company to agree to let them use the medicine in the office rather than ship it just for him. This avoided us having to pay for 50% of the cost of the shot. The shots are over $2,000 each and he is supposed to get six of them. He will only get four because it took so long to get the first one. He was 22lb 2 oz at the Pulmonologist's office when he got the shot. He has never been over 22 pounds on any scale so he gained some weight. The tuna salad and olive oil must be packing on the pounds.

Equipement and FTT

Not a fan of winter gear.

Last week Nicholas had an appointment with the GI doctor. He isn't gaining weight and growing like he should be so he diagnosed him Failure to Thrive. He said to give him fish and add olive oil to his food. He also said to add protein powder to his food. Of course most protein powder has milk in it so I wasn't able to find any. Grandma T got some at Whole Foods that is milk free. I can't wait to go to Whole Foods later this month. It is going to be a dairy free wonderland! He has been doing well with the tuna. We are adding Miracle Whip so it is like tuna salad baby food. Looks gross but Mark said it doesn't taste bad.

His feeding therapist came by to go over his swallow study. He has a safe swallow meaning he isn't aspirating into his lungs but it is very uncoordinated. He has residue left in his mouth that takes several swallows to get rid of. He also has premature spillage into his throat. That means the food is going down by gravity rather than him forming a bolus and making a swallow. We really didn't get any new news. He is uncoordinated and has texture issues. So no feeding therapy and we are to work on de-sensitising his mouth.

Nicholas did really well at AV therapy today. It is affiliated with USC so they are going on winter break for 4 weeks. Since they like Nick, the instuctor said she will try to come in to see him while they are on break.

The Giraffe Stander

Yesterday during PT, a rep from an equipment company came out to measure Nicholas for his wheel chair and stander. He has to start getting his therapy through the school system as soon as he turns 3 so his therapist wanted to go ahead and order the wheel chair since it can take forever to come in sometimes. It looks like a stroller so that is pretty cool. The stander on the other hand, looks like a torture device.

The Stingray Wheel Chair