Sunday, November 29, 2009


Nicholas had a his first Thanksgiving at home this year. Grandma and Grandpa Dale can to visit from Chicago and Grandma and Grandpa Matthews were here for the meal. We started the day by going to Sandhills to take our family Christmas photo. They have a big decorated tree outside and I figured since it was Thanksgiving and the stores were closed it was a perfect time to take Nicholas there and avoid people. It worked and the background looks really nice but we probably took 25 pictures and he isn't looking forward in any of them. A few were still pretty good so I ordered our photo cards.

During dinner we gave Nicholas some mashed potatoes. He hated them. He gagged and threw up. He gagged on a teeny tiny piece of turkey too. He sucked on a roll without gagging but didn't eat any of it. Preemies can have a lot of problems eating and I think we are going to run into that when we try to switch over to table food.

Not much else has been going on. He had occupational therapy last Wednesday and his therapist was so happy with his improvement in just a week. She said he made her Thanksgiving. He got his second dose of the seasonal flu shot and the first dose of the H1N1 shot last Tuesday. This week he has a visit from his early interventionist, physical therapy, and occupational therapy.
Mark has had a cold all week and I just started to have symptoms today. Nicholas had some crusty around his nose this morning but no other signs. We being really careful but I caught it so we aren't out of the woods yet.

Tuesday, November 17, 2009

Hearing Update

Nicholas had an appointment at MUSC with the cochlear implant surgeon and the audiologist. We have to do a hearing aid trial before we can go forward with the implant. The audiologist made molds of his ears for the aids. She said that when they come in she will put them on and do a quick test in the sound booth then have us come back in about a month to do another sound booth test. If there is no respone, which we doubt there will be, we can move forward with the implant. If he does show a response with the aids we will have to do more testing to see how much he can hear with them and if it is enough to not have to get the implant. The FDA requires the hearing aid trial in children. If there is any chance that aids will allow him to hear and they do the implant, the little bit of hearing that is there will be ruined. We don't think they will work but we can't avoid this step. Now we have to try and get funding for the hearing aids. They cost about a thousand dollars each so we really don't want to pay out of pocket and insurance won't cover them. There is an organization that will provide funding for Medicaid patients. His Medicaid, that he got for a year, runs out at the end of the month. I called the organization and have to wait for them to call me back to set up an interview. I've applied for TEFRA Medicaid which is based on his disability rather than our income and it is still in the approval process. So if we can't get them funded this month we have to try going through Baby Net which is the early intervention organization. MUSC does provide loaner aids but we are responsible for the cost if they are lost or broken. So once we get the funding for the aids we will go back to the audiologist to start the trial.

PT and OT started back up today. His physical therapist went to a conference this weekend about a product called Theratogs. It is a vest that helps retrain the muscles to work properly. She thinks this will really help his trunk muscles, which are weak and causing him to have a weak neck and not be able to sit yet. She has to get funding for this too. She is going to try to borrow one and take pictures of him wearing it and not wearing it to prove that it is helping and try to get the funding sooner. It could take up to a few months. The website is if you want to look. His first OT appointment is tomorrow. Nothing else is going on this week.

Monday, November 9, 2009

First Birthday

Nicholas turned 1 on Sunday. It is so hard to believe a year has already gone by and wow, what a year it has been for him. Grandma and Grandpa Matthews came over to celebrate. We got him a smash cake but he wasn't too interested in it. Mark put his hands in it then he sucked his thumb so he kind of ate some. Mark also fed him some frosting. He did not enjoy his hat or opening presents. I think he was over stimulated and tired. He sure was spoiled for his birthday, just wait for Christmas.

He had his 1 year check up at the pediatrician today. Everything is good. He is 16 lb. 12 oz and 26 inches. He is still pretty small but that is ok and he will catch up. His doctor said we can start giving him regular food that we smash up. We'll see, I'm going to stick with baby food for now. She also wants to keep him on formula until he is 15 months. He got 4 shots today and his Synagis shot last Friday. Poor guy has been through a lot these past few weeks. We are skipping PT and OT this week, which I'm sure he won't mind, but will be back at it next week. We have an appointment at MUSC with the surgeon for his cochlear implant and the audiologist on Thursday.

He also had his first tooth on the bottom pop through. The second one isn't far behind and one on the top is close too.

Saturday, November 7, 2009

The First Year

What a week, well almost 2!

Stitches and 2 shunts.

His nurse had to use his thunb hand for an IV but she was so nice and left his thumb out.

A lot has happened since my last post. Nicholas had another CT done on Sunday night and it showed that his lateral ventricles were enlarged. His original shunt is in the lateral ventricle. So he had surgery number 10 on Monday to replace his first shunt. We were ready to be discharged on Wednesday but on Monday night he was desatting to the upper 80's, 100 is normal, so they put him on oxygen. He also had low blood pressure so we had to stay another night. He started vomiting again on Tuesday morning so another CT was ordered and his fourth ventricle shunt was over draining. That shunt is programmable so they reprogrammed it to allow more pressure to build up before it drains. That seemed to do the trick but then on Wednesday afternoon he started to vomit again. So they reprogrammed his shunt a second time. Once again, that seemed to make things better and he was discharged Thursday. We got home and he did well that night but vomited again Friday morning. Mark had to go to the pulmonologist office to get Nicholas' Synagis shot for RSV season. After the appointment he stopped by my office and told me Nicholas vomited so I called the neurosurgeon's office. They were able to get us in quickly and ordered another CT. This scan showed his lateral ventricles were enlarged again. His doctor thinks the shunts are still not balanced because his lateral ventricle shunt is brand new and should be working. So he reprogrammed his fourth ventricle shunt again. It is at 180 now and the highest it can be programmed is 200 and when to you get to 200 it is like turning the shunt off. He has been good so far with no vomiting. We have our fingers crossed this is the right setting. Nicholas rolled over for the 2nd time while he was in the hospital.

Sunday, November 1, 2009

Not going home yet

Nicholas has his surgery on Friday. His neurosurgeon decided to only put in the second shunt in the fourth ventricle. The surgery went well and he was supposed to be Check Spellingdischarged today. But, last night and this morning he hasn't been able to keep formula or pedialyte down so they are keeping him another night. Vomiting is a sign of shunt problems so they will probably order another CT to look at his ventricle to see if they are enlarged. Poor guy. Waiting on neurosurgery to come back and decide what they are going to do.