Sunday, December 27, 2009

Christmas













We had our first Christmas as a family at home this year. It was so much better than last Christmas because Nicholas is home and healthy. Last year he was having a hard time recovering from surgery and we weren't sure if he was going to make it. It was a great day and between Mommy, Daddy, family, friends, and Santa, Nicholas was spoiled. Out of everything he got his favorites are a new grabby ball, a stuffed hedgehog and a blow up penguin.

This week he has PT, OT and he gets his hearing aids. We got a ton of rain on Christmas and there was a huge puddle in the backyard. Goofy Bella was afraid of it.

video

Friday, December 18, 2009

Theratogs






Nicholas got his Theratogs today. The theratogs are a nylon and spandex undergarment. It is similar to the material a wet suit is made out of. Nicholas has low tone in his truck which means his back is very weak. His back in in a thoracolumbar kyphosis position which is basically curved forward. The orthotist explained that if he stays in that position his vertebrae will move and become wedged with the top of the vertebrae moving downward and the bottom of the vertebrae moving upward. That is bad and hopefully the Theratogs will help correct that. It is a vest and a set of straps. One strap goes from his shoulders down to his thighs and it pulls his back into an upward position. The other set of straps goes from his shoulder blade to the bottom of his back to correct and help the muscles in the middle of his back. Theratogs are a slow correction device and it can take about 4-6 months to get full improvement. The orthotist estimated the his back was 12 degrees straighter with the Theratogs on. He said that as little as 5-7 degrees straighter is good so 12 degrees is great. He has to wear them for 4 hours a day for the first few days then when we see his physical therapist on Tuesday she can decide if we should increase how long he wears it.

This week he had early intervention, PT and OT. He did really well during both therapies. He rolled from stomach to back for the first time during OT. He also went to the Pulmonologist. His lungs sound great and he goes back in 3 months. The doctor wants to keep him on Flovent until his next appointment then he might not need it anymore.

His hearing aid appointment had to be rescheduled because his audiologist has a death in the family. His new appointment is Dec. 31.

Thursday, December 17, 2009

Dad's message of inspiration


Hello everyone. This is Dad. I don't really talk much, my wife is the one that does the great work to keep the blog up to date. Earlier this evening, Corinne and I were reminiscing the past year and everything our son Nicholas has been through. Anyone that knows me, knows how proud I am of my son, and how much I love him. We have been through hell in the NICU with Nick and we made it. This is a little message to all my fellow premature parents struggling to keep the faith, and their sanity

I am writing today to I guess give a message of inspiration of hope, and never giving up. From previous posts I am sure you have seen everything our son Nick has been through. It has been a really hard year but we pulled through. I remember the countless hours in the NICU, loss of appetite, headaches from worrying so much, the endless nights of not sleeping, or falling asleep next to his isolete. Once I even fell out of my chair after I feel asleep, and hit my head on the isolete stand. So many doctors and nurses talking to me I lost track of who did what. For those of you that have a child, or children in the NICU just know you are not alone and your child needs you more than ever. Nick was given slim chance of living and has had a few close calls. From given 72 hours to urinate, and stabilize his blood pressure, to flatlining. Ten surgeries, being deaf, chronic lung disease, perforrated intestines, category 4 brain bleed, and the list goes on. There were times I almost gave up hope, but everytime I saw him I knew I had to keep fighting and never give up hope. SO DO YOU. NEVER GIVE UP!

I think finding out he was deaf was the hardest thing. I mean, "Why Us?" What did we do to deserve our son to be this sick, and have these problems. Never have my emotions been put to the extreme test than learning our son was deaf. We all live in this perfect bubble thinking that this will never happen, but when it does it is how you deal with it is what makes you stronger than ever.

I have become a huge supporter for disabled children from all aspects. Seeing children in the NICU without parents that cared enough to show up, or even acknowlege their child will literally make you sick to your stomach. Yes, a lot of babies NEVER get visitors. I can't fathom what that must be like to not have a soul and abandon your child. Ugh! That makes me sick to my stomach.

For the parents just beginning the NICU experience, or that have been there a while and just need a little inspiration, allow me to say, "I do not know if everything will be O.K. I do not know what the long term effects of your baby my be. I do not know what will happen. " I do know that you must never give up. NEVER GIVE UP! I know you are tired from working all day, or all night, then having to make that drive to the hospital....DO IT! DO NOT always listen to the Doctor's when they tell you what horrible things that may happen to your child. It is their job by law to give full disclosure, and some have terrible bed side manner. Read to your child, touch your child, let your child know you are there. Most important...DO NOT give up hope. I know you have those days where all the other children are doing great and yours is doing horrible. That was us most of the time. almost every week we got bad news.

Also know this. When your child makes it home you will know so much about the care of premature children, and operating the machines you are ready to start working in the NICU. I guess I will quit rambling. the words didn't come out the way I wanted, but I just wanted to give a message of hope. Even when your child gets home that is even more important than the NICU. You may have endless doctor appointments like we do, and constant fights with the insurance companies. It will not be easy. It will be 10 times harder than a normal baby. You will get tired, frustrated, and discouraged at times. DO NOT GIVE UP! You will be amazed what you can do.

Thank you for reading my unorganized babble. I just want to give back and help those who are where we once were. DO NOT GIVE UP, and BELIEVE!!!!!




Sunday, December 13, 2009

Approved









This was the week for approvals. First Nicholas was approved for the hearing aid program through Children's Rehabilitative Services. They are going to pay for his hearing aids. Then the next day he got approval for TEFRA Medicaid. This is Medicaid that is based on his disabilities rather than our income. He is covered by insurance too but having Medicaid is a nice safety thing to have especially since it will cover his cochlear implant. Then we found out that insurance already approved payment for 70% of his Theratogs and Medicaid should pick up the rest.

On Tuesday Mark and Nicholas met his physical therapist at Capital Prosthetics to get fitted for Theratogs. Those are going to be interesting to work with but they are going to help his muscles learn to work like they are supposed to. Since insurance already said they will pay as soon as the Theratogs come in they are ours. On Wednesday he got his monthly Synagis shot. He had OT after the shot and was not happy so that session ended early. We made next month's appointment on a Friday so he won't have PT or OT on the same day. On Friday he had a check up at the Neurosurgeon. Everything is good with his shunts and his doctor was very happy to see him doing so well. He sent us to get a CT of his brain so they have a good scan on file to compare to the next time he has a shunt problem.

This week he has PT, OT and a check up with the Pulmonologist. And, he is getting his hearing aids on Thursday. I can't believe his audiologist was able to get us in so fast. One step closer to him being able to hear.

Sunday, December 6, 2009

Slow Week





Last week was pretty slow. Nicholas had early intervention, PT, and OT. He did well with his therapy sessions. His physical therapist has seen an increase in his back strength and they both see improvement in his head control and lifting up on his stomach. This week he is getting fitted for Theratogs. He also gets another Synagis shot and has a check up with the neurosurgeon. We are still waiting to hear something about our application for hearing aid funding and Tefra Medicaid. I applied for Tefra in August and they still haven't completed his application.

Sunday, November 29, 2009

Thanksgiving








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 http://www.theratogs.com/ 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.