Tuesday, July 28, 2009
Nicholas had his first real physical therapy session today. The therapist saw an improvement in his head control from last week. He is a little behind but once he gets his head control down everything else will fall into place. She also gave us some more exercises to do with him. She was very encouraging.
He also had his first photo shoot today. We got a few good shots. Daddy forgot his extra outfits but Grandma and Gymboree next door saved the day.
Nicholas had prunes for the first time last weekend. He actually like them with no protesting. They are a mess going in and coming out.
Sunday, July 26, 2009
Nicholas is 5 months adjusted as of yesterday. We weighed him on our scale and came up with 15.5 pounds and he is about 24 inches. I got the disc of his CT scan from the hospital. I was actually able to look at it! It is all brain so I don't think it will work for his cochlear implant evaluation because I couldn't see any ear on it. It was still neat to see it and I could see that the ventricle in his brain was enlarged in the scan from the ER when his shunt failed. Grandma and Grandpa are visiting from Chicago so Nicholas is getting lots of extra love.
Wednesday, July 22, 2009
Well we made it down to MUSC in Charleston for Nicholas' ABR test and Mark managed to keep him awake in the car. The audiologist was able to test high and medium pitches in his left ear before he woke up. There was no response at the loudest level. She still needs to test at low pitches and the right ear. Nicholas was wide awake and ready to play so we couldn't finish the test. Of course he fell asleep as soon as we got in the car. We have to go back on Aug. 6 to test the right ear and finish the left. We are also going to meet with the surgeon who does the cochlear implants then too. The audiologist said that we will have to try hearing aids and if he is a candidate for the implant they will probably wait until he is one year adjusted which will be the end of next February. We won't know if he is a candidate for an implant until we can get a CT or MRI done and see if he has the nerves in his ears that will allow him to hear. I called Palmetto Health and asked for a disc with his CT scans from his shunt. Maybe if we are lucky those will also show his ears and the surgeon at MUSC will be able to use those so we won't have to get another test done.
Tuesday, July 21, 2009
The physical therapist came out today to evaluate Nicholas. She is actually very impressed with his development. She doesn't feel that he is behind much at all. She did some tests to see his head control and reflexes. She said all his reflexes are great and she didn't feel any stiffness in his arms or legs. She wants us to work on his head control and neck strength. We can do this by pulling him up into a sitting position and doing tummy time on the boppy with his arms all the way over and off of it so he has to use his neck. She also wants us to do more Bumbo time. She is also recommending a corrective helmet for his head. I called the pediatrician about it and we are going to wait for her to look at his head until his appointment in August. The therapist is going to do weekly visits for now and said he will have fun next week when the therapy actually gets started. We were so happy to hear this because we thought he was falling behind. She said she isn't worried about him not being able to crawl or walk but that it may take longer and he will do it on his time. This is wonderful news since his Grade IV brain bleed can have a big impact on his development and ability to walk. Tomorrow we have his long ABR at MUSC to test his hearing.
Thursday, July 16, 2009
Nicholas had an appointment with his pulmonologist today and he discontinued his apnea monitor! We are so happy he is doing so well with his breathing. I never thought he would be off oxygen and the monitor as fast as he was considering he had such a hard time coming off the ventilator in the NICU. The doctor also decreased his Flow Vent (lung medicine) from twice to once a day. He has to go back in 2 months for a check up and to start his Synagis shots. Synagis helps incase he gets RSV. It doesn't prevent it but it will help him recover faster if he gets sick.
Next week we have our hearing appointment at MUSC. I really hope he sleeps for the test and they can do it. The speech therapist wants to wait until he has hearing aids to work with him now. In her evaluation she had that he is severely delayed in language and the faster we can do something about his hearing the better. Well duh, we know he can't hear and I have been making call after call ever since we were told he can't hear trying to get the process started. Her evaluation made me feel like we aren't being proactive with his hearing and it is our fault he doesn't have hearing aids yet. I hate relying on other people to get things done but what else can I do.
We also have a physical therapy evaluation next week. I guarantee he will get a bad evaluation and we will be told he is really delayed. I'm starting to see that he is delayed with certain milestones he should be doing now. I've been calling about PT ever since he got home and what can I do if it takes 3 months to get a therapist to see him. That is a state program for you. Needless to say, I've been really frustrated the past week. We get these services through a state program and they are soooo slow! I hate seeing him fall behind and we want him to have the best opportunities available.
Monday, July 13, 2009
Mark took Nicholas to the cardiologist last Friday. The pediatrician wanted us to go because his apnea monitor showed his heart rate dropped too low 125 times. They did an ultrasound to check his PDA and did an EKG. His heart is completely fine and the doctor thought it was the apnea monitor malfunctioning. We got a new apnea monitor and haven't had any alarms.
Our early interventionist and the speech therapy had a meeting with us today. They want to hold off on speech therapy until after we get the full hearing test done next week. Once he has hearing aids the therapist will be able to work with him. Our early interventionist is also recommending we ask his pediatrician about corrective helmet therapy. He has a flat spot on the right side of his head because he favors that side. We don't know if he can even use a helmet because of his shunt but we will ask.
Nicholas also had an eye doctor appointment today with the pediatric eye doctor. His eyes are ok for now and he is far sighted in the right and near sighted in the left. They said this is pretty common with preemies and is something they have to watch. He doesn't need glasses at the time but he might in the future. We go back in 6 months.
Wednesday, July 8, 2009
Nicholas is 8 months old today! It is hard to believe and he is growing up so fast. He is doing so well too. He is smiling all the time and he started blowing raspberries. He is also exploring his legs and I don't think it will be too long before he finds his feet.
We have an evaluation with a speech therapist tomorrow. I asked her what she can do for him now since we know he can't hear. She said that starting therapy early helps for when he has hearing aids or the cochlear implant. He will be used to the therapy sessions so learning to listen and respond will be easier. She also said it will teach us and him how to communicate through eyes and body language. She also recommended we try to get his hearing aid trial started ASAP.
After many phone calls I finally got an appointment at MUSC for another hearing test. The audiologist there told us that the ABR test they did here in Columbia was a shortened test and it only tested at high frequencies. She said that test doesn't test the whole spectrum of hearing and that they should not have told us he is deaf and that our only options are the cochlear implant or sign language. We are going in for a long ABR type test that will test everything. Then once we are done with that we will know if he can hear anything and will do the hearing aids. The test is July 22 and she wants him mad, tired and hungry when we get there. Then the plan is to feed him and let him sleep through the test because she doesn't want to sedate him if it can be avoided.
I got a call from the pediatrician's office on the way home today and we are being referred to a cardiologist. They got the download report of his apnea monitor and it showed 125 bradycardias (drop in heart rate). I think there is something wrong with the monitor because it hasn't gone off and the memory filled up in 4 days when it should take 6 weeks to fill up. We called the home medical equipment people and they are supposed to call us back. We were hoping to get rid of the monitor next week and now I don't know if we can. We will go to the cardiologist just to be safe.
Sunday, July 5, 2009
Not much has been going on lately. I have a horrible cold so I have been quarantined in my bedroom so Mark and Nicholas don't get sick. So far so good. We were planning on taking Nicholas outside to let him see the fireworks since he can't hear them but he feel asleep. We are going to try to show him some sparklers tonight. His appetite seems to have increased because he is drinking bigger bottles and he is doing really well eating fruits. MUSC called us back about the cochlear implant evaluation. The audiologist wants to do a long sedated ABR, auditory brain stem response, so our appointment on Aug. 27 will be changed to allow more time for that test. I really wish we could get a date for that so we can do the hearing aid trial and get the implant by his first birthday.