Long Needed Update

Little Boy Got His First Real Haircut.

Not much has been going on with us. Nicholas had another dentist appointment. She wasn't able to do much because he wasn't cooperating. She said the stain on his teeth is deep but it should lighten up over time. She was able to scrap a little and put fluoride on his teeth. He also had his second Synagis shot. Mark and I caught our colds from Nick and we had it way worse. The Synagis shot really helped. Maybe he gave us RSV. He also had a port flush. They finally got blood return this month. They haven't gotten any blood the past few months and had to give him a medication last month to try to break up any clots that might be in the line. It must have worked because they got blood this time. He also had a check up with the Neurosurgeon. He is happy with him and happy that the big golf ball size lump on his head went down. The CT looked that same as before he adjusted the shunt in November. He goes back in six months. Next week he has his annual check up with the eye doctor.

One thing that is really awesome is that Nick has started to do an inch worm/army crawl thing on his tummy to get to toys. He is also standing straight up in his pod while he holds on to the front of it for balance. He looks so tall when he does that! He also moves backwards around the kitchen in his walker. All very good things for his development. His physical therapist said his wheel chair and stander are in so we are waiting on a call from the medical equipment company to set up delivery. He hasn't been doing very good with his ear lately. He keeps taking the coil off his head. It is pretty frustrating because it is so hard to keep it on him and this isn't helping his learning to hear. We are supposed to get a replacement part for his original processor today. The wire connecting the coil on his head to the sound processor was broken. Maybe going back to his beat up old one will help.

More Christmas Pictures

Go Pod

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Under the Tree

Nick and Grandpa Stan

New toy

Nick and Great Aunt Pam

A Much Needed Update

Wearing Daddy's Bears hat in the Go Pod

Nick and Great Uncle Jim

Four Generations

Nick and Daddy

Nick and Aunt Heather

Nick and Great Grandma

Nick and Mommy

Under the Tree

I have been a bad blogger lately. It just seems like there is no time anymore. Let's start with Christmas. We had a small get together with Grandma and Grandpa Matthews before Christmas. Then Grandma T flew down to SC so she could drive back to Chicago with Nick and me. Mark couldn't request his vacation until Dec. 26 so he flew to Chicago on Christmas and drove home with us. The drive up there was not bad. It took us 14 hours which included 2 stops of an hour each. Nick did pretty well. He was getting bored so whoever wasn't driving was on their knees in the front passenger seat trying to entertain him. His favorite thing to do was play with a toy then throw it between the seat and the door. About 2 hours from home he got really mad. He was so upset I had to take him out of the car seat. I felt horrible doing that but it made him stop screaming. When we got there we put him in his play area and he was so happy.

The first few days we did some shopping and baking. He does not like his winter coat at all. We found him a less bulky winter coat that he accepted more but he spent most of the time in the house. On the 23rd something went wrong with the processor for his cochlear implant. I called Cochlear and they said it was something with the programming and the audiologist would have to fix it. Of course we didn't bring his backup processor with us and the audiologist was about 900 miles away so he was earless until Mark got there with the backup on Christmas morning. On Christmas we spent time with the family and opened presents. Nicholas was having a hard time with all the noise so we had to take his CI off. He was in silence for a few days and there were more people there than he is used to so that is understandable. Once we turned it off he was happy. He kept scooting under the tree pretending to be a present. He also enjoyed playing with Uncle Tim's pants.

We found this chair called a Go Pod while we were up there. We bought a new walker to take with us but the seat was so shallow he was flopping over and could fall out so we couldn't use it. The pod has a low seat and he can stand up in it. It is really neat. I have to post a video of him in it. It was next to a chair that had a blanket hanging over the top. He kept sticking his head in the folds of the blanket and jumped up and down. He thought it was great! It was really funny.

The day after Christmas my mom's family came over. It was great that they agreed to change the normal Christmas plans so they could see us and meet Nicholas. The next day a bunch of friends came over to meet him. We also had Mark's cousin, his wife and son, and his aunt over for dinner. It was nice to see them too.

It was a great trip and really flew by. The drive home was not fun at all. We were making good time until we got to the Kentucky/Tennessee state line. There was an overturned semi which caused the interstate to stop. Then there were a bunch of fender benders from the stop and go. Heather and John were nice enough to look online to see if they could figure out what was going on. They found the department of transportation site and told us what to expect. It was right and very helpful. That mess took 3 hours to get through and we only drove 40 miles. Nicholas was getting mad by that point so we stopped for dinner. We brought the pod in so he could stretch his legs out. We were probably the talk of the servers at Cracker Barrel that night. Right when they were serving our food Nick threw up. He just ate too much. I caught the first one in the bib and Mark caught round 2 in his hands. I would have been so grossed out if I was the server. Then about 20 minutes after we got back on the road Nick started screaming. We were going to have to stop for the night or I was going to have to take him out of the car seat. I really didn't' want to do that because we were at the beginning of the mountains and that is the most dangerous part of the drive plus it was nighttime and there was ice on the side of the road. Then I caught a whiff of his diaper and knew it was a bad one. We stopped at a gas station and they didn't have a changing table so we went to the next one and they didn't have one either. So annoying. We had to change him in the front seat of the car in the parking lot. Poor guy had poop all over his clothes and down his legs. It was bad. To top it off it was about 20 degrees outside. He was shivering and crying. We got him in his PJ's and back in the car and he was asleep in no time. So we continued driving. This all happened in Tennessee so we still had about 5 hours of driving. We finally made it home at about 1am after 19 hours of traveling.

The next day Nick had a low fever of 100.5 and was a little congested. We canceled OT and his GI scope. He had whatever it was for a few days. Thankfully it never got bad and he did really well with it. Now Mark is sick and I'm trying not to get it. Therapy was back to normal this week. He did really well in both PT and OT. Both his therapists approved the pod too. You never know, something that we think is great could be really bad to a therapist. His physical therapist had him sitting for 10 seconds. She thinks he is really, really close to sitting on his own. He has really taken to the sippy cup the past few weeks. He looks at it in amazement. When you give him a drink he smiles then grabs for it. He will bring it to his mouth and chew on it. It is so funny how he thinks it is just the greatest thing. This is a big improvement from about a month ago when he would push it away.

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