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

Updates

I have been such a bag blogger lately. I have to go back through my appointment book to do all Nicholas' updates. We have also been bad about taking pictures so I'm using phone pics. Lets see, going back to the beginning of November, Nicholas had an ultrasound of his gall bladder. The gallstone is the same size. He sees the GI doctor this Friday so we will find out what his plan is. He had his 2 year well visit on the 11th. He was 21.5 pounds and 30 inches. He gained good weight since his last visit but his length is concerning. If he still isn't growing much at his next well visit in 6 months he will have to see an Endocrinologist. Besides that his doctor was very pleased with him. He had another swallow study on the 22nd as requested by the feeding therapist. The therapist doing the study said that he has a texture/sensory issue with his mouth. He is swallowing fine, so that is good. His feeding therapist wants to go over it with both of us and decide what to do. She thinks he is going to need about 2 hours of feeding therapy a week. We made an appointment with the Neurosurgeon because he had some swelling on the valve of his shunt. The doctor decided to adjust his shunt to drain faster and do a follow up CT in a month. He has had a big bulge of fluid where an old burr hole is every since they moved the shunts to the other side of his head. The bulge went down to about half the size it was and no shunt malfunction so hopefully that did the trick. I thought they should have done that like 6+ months ago but whatever. Logically to me, it seemed like the fluid wasn't draining fast enough so it was going out any path it could take, hence going out the old burr hole. We'll see what he says after the follow up CT and office visit. Nicholas still hasn't gotten his Synagis shot. That has been a huge mess. His insurance is based out of Florida and they have to ship the medicine to the doctor's office rather than letting the doctor use what they already have in stock. The insurance will only pay 50% of the expense and the shots are about $2500 each. He needs 6 of them so that would be $7,500 we would have to pay for the remainder. He has SC Tefra Medicaid and they would normally pay the remainder but since the medicine has to be sent from a pharmacy in Florida, SC Medicaid won't pay for it. So I don't know what is going to happen with Synagis. That's about it in updates.

2nd Birthday Pictures

Halloween and Medical Update

The Friday before Halloween we went to Boo at the Zoo. They decorate the zoo and have activates for kids set up at night. Nicholas enjoyed the lights. We borrowed a wagon and he just chilled in it while we pulled him around. We got so many complements on his Nemo costume. It will be a lot more fun in a few years when he can participate. They also put lights up at the zoo for Christmas so we will probably take him to that too. On Saturday I brought him to Publix to do some trick-or-treating and show off his cuteness. On Halloween we went trick-or-treating around our neighborhood. It was really disappointing. About 85% of the houses didn't have their lights on and weren't giving out candy. It was nothing like when we were kids. Next year we are going to have to figure out a better place to go.

Nicholas had a CT of his brain and an appointment with the neurosurgeon. The radiologist red flagged his CT because his ventricles looked a little enlarged. The neurosurgeon sent him to get a shunt o'gram (x-rays looking at the shunt tubing) and an ultrasound of his belly to look to see if it is draining alright. Everything looked fine and they compared the new CT to one from right after surgery. The ventricles are a little bigger but they get bigger with his regular growth so they are going to leave the shunts alone. He isn't acting like anything is wrong with them, which is good. They are going to do another CT in three months.

He also had an ultrasound to look at his gallstone. It is the same size as is was during the last ultrasound over the summer. He sees the GI doctor in the beginning of December so we don't know what they are going to do about it.

His speech therapist is going on maternity leave so we have been trying to get into the clinic that does AV therapy, which he needs for the cochlear implant. That has been a huge hassle. They changed the one time slot they have open on us about 5 times. We were finally able to get him in Wednesday mornings. We have to push OT back a little bit but we should be fine. He also started feeding therapy last week. The therapist said he has one of the worst cases of texture issues on his tongue that she has ever seen. She watched him play with his toys and noticed that ones that have texture cause him to make a face or cough once he gets them to a certain point on his tongue. We have never noticed that. He will put anything in his mouth beside food so we didn't think it was a texture problem. He is fine with smooth things. She said this is going to be a very long process and a lot of hard work to fix. We have to figure out why he has the texture issue and since he can't tell us that is going to be hard to figure out.