Another surgery

Nicholas is having another shunt surgery tomorrow. His fourth ventricle is enlarged and causing the bulging soft spot. His current shunt is working and his lateral ventricles look good. This means he needs to have a second shunt placed in the fourth ventricle. So he will have 2 shunts on the right side of his head. Surgery is scheduled for 1pm tomorrow.

Good news and bad news

First the good news. I got the official results on the CT scan for Nicholas' cochlear implant. He has the parts and can get the implant! Our next visit with the surgeon and audiologist is Nov. 12.

Now the bad news. Nicholas is currently in the hospital. His soft spot has been bulging so we brought him to the ER on Sunday. The CT and x-rays showed the shunt and his ventricles looked good. The bulge has gone down and come back and gone back down and back up so I brought him back to the ER yesterday. They repeated the CT and it showed a slight dilation compared to Sunday's CT. We have seen a nurse practitioner and physician's assistant from neurosurgery and they think his shunt is starting to malfunction. His neurosurgeon is currently in surgery so we have to wait until he looks at the scan and decides what to do.

He Rolled Over!

It was kind of a busy week for Nicholas. On Monday he had early intervention. His EI was very impressed with him. He was wide awake and showed off his tracking and grabbing skills. He even imitated her by sticking his tongue out after she did. Tuesday was his normal physical therapy. He did well and as always, is improving every week. After working his muscles in PT he rolled over later that day! He hasn't done it again but that is a huge milestone. Wednesday he had an occupational therapy evaluation. He did well and she is coming back next week with her evaluation results and to determine how often she is going to see him. Today Nicholas and I got our flu shots. He did well, probably better than Mommy. I was planning on getting the mist because I hate needles. The nurse said that since the mist is a live virus I could easily pass it on so the shot would be safer to get. So I sucked it up and got the shot.

Still no official yes or no about the CT for the cochlear implant. I called on Thursday and they received the disc and the Dr. was reviewing it. I never heard back so I called on Friday and the Dr. and his nurse we not there. The nurse that I talked to looked at his chart and Dr. L wrote that he needs to complete the cochlear implant evaluation with audiology and speech. We are taking that as his ears are good because why would he say he needs to see audiology to complete the eval process if he doesn't have the right ear parts. The nurse is supposed to call me on Monday.

Pumpkin Patch

It was kind of a slow week for us. I picked up the CT scan from Palmetto Health and shipped it to MUSC. The radiology report said that his ears are normal but didn't say anything about the nerve. That is still encouraging but we have to wait for the surgeon to tell us the official results.

An occupational therapist is coming to do an evaluation on Wednesday. He has PT on Tuesday and Early Intervention on Monday.

Cochlear Implant CT

Nicholas had the CT to look for the cochlear nerve yesterday. He needs to have this nerve in order to get the implant. His surgeon said he has never seen anyone without it so we have our fingers crossed. Everything went well and Mark was very pleased with the children's hospital this time. I'll call MUSC in a few days to see if they have the results. We go back down there to meet with the surgeon and audiologist Nov. 12.

He had PT today and did well for half of it. Then he had enough and let everyone know. Nothing new with PT, just continue to work on what we are doing.

The pulmonologist had to reschedule his first Synagis shot. Insurance approved 5 shots starting in Nov. so his appointment is now Nov. 6 instead of this Friday. Synagis is for RSV which is a respiratory virus. It is very dangerous for preemies if they get it because their lungs were so underdeveloped and their chronic lung disease. Synagis doesn't prevent RSV but it lessens the severity of it.

Nicholas is doing really well with his baby food. He sits up well in his high chair and has been eating a whole container 2-3 times a day.

Week turned out slow

Nicholas lucked out with two things this week. His physical therapist has an infection so she had to cancel. She has to get permission from her doctor before she can treat patients again so we aren't sure if she will be here next week or not.

The CT for the cochlear implant was scheduled for tomorrow but was changed to Monday. A nurse called for his history and after giving her his history and talking to a doctor, the doctor felt it would be best to fully sedate him with anesthesia. He will have to be put on a ventilator too. With his history of chronic lung disease and sleep apnea full sedation is safer.

He has been laughing a lot lately. We tickle him on his neck and stomach and he loves it. He also thinks he is a big boy and doesn't want to take naps anymore. This has caused him to be one crabby boy a lot and has messed up his sleep schedule. He fights sleep all day and finally falls asleep between 5-7 so he is up late.

11 months old tomorrow!

7 Months Adjusted

Nicholas is now 7 months adjusted, well he was on Sept. 25 but I didn't post. This week he had a check up with the neurosurgeon. That is the easiest doctor to go to for a check up. They just measure and feel around his head and ask us questions that would signal a shunt problem. His shunt is fine and he will go back in 3 months for another check up.

He had PT the same day as his doctor appointment so it didn't go too well. He didn't get his morning nap so he was tired and not wanting to work. His therapist still sees improvement each week. We can really tell a difference too. If he is awake and laying down he will move his head all around or leave it mid line. He used to turn it to the right all the time if he was awake or asleep. It is still turned to the right when he is sleeping but that is ok. He has also started to roll both left and right. He was only going to the right but now he does PT on his own and rolls from side to side.

His early interventionist is still looking for an occupational therapist for him. OT works on fine motor skills while PT works on gross motor skills. OT will help him with grabbing and holding objects. It will also help him use both hands equally. He favors his right hand and arm right now. He has no problem moving his left arm but he doesn't use it nearly as much as the right. He also turns it outward when he brings it to his face so his palm is facing out. We encourage him to use it and we turn it the other direction. He will put it in his mouth and use his right hand to hold it in place.

I scheduled our flu shots. We couldn't get in until Oct. 24. Nicholas will get the shot and I'm going to get the nasal mist since I'm a chicken when it comes to needles. Mark can get a flu shot free from work so he will do that.

Next week we have the CT scan to look for the cochlear nerve to make sure he can get an implant.

Physical Therapy

Not much is going on this week, only a PT session. Nicholas' therapist said he continues to improve each week. She said him not being able to hear effects his head control because he can't use sounds to balance his head. He has gotten better holding his head up during tummy time too.

Savannah

We went on our first over night trip last weekend. Nicholas' pediatrician gave us permission to stay at a hotel if we brought the pack n play and sanitized everything. We stayed in a suite so we had a fridge and microwave, that helped with bottles. We had a good time but needed a 3 day weekend because we ran out of time to do everything we wanted to do. It was also amazing how much stuff we had just for one night. First we stopped in Hilton Head Island to go to the outlet mall. We tried Nicholas in the stroller without the car seat to keep him cooler. He kept turning his head all the way up and to the side so he went back in the car seat. He seemed comfortable with his head like that but it didn't look very comfortable. He had a poopy accident there. I took him out of the stroller and his bottom was wet, I thought it was a pee accident until I took his shorts off and there was poop all over. That was really gross and we were changing him in the back of the Jeep so it wasn't very easy.

After the outlets we went to Savannah. That is our favorite place to go for a weekend. It is such a beautiful and historic city, we love it. We forgot to bring the baby carrier that you can wear and Savannah is not stroller friendly. There are a lot of cobblestone roads and sidewalks. We had to go down a big hill of cobblestone to get to the river front. Mark carried Nicholas while I tried to get the stroller down the hill. It wasn't very easy but we got there. We snuck through a hotel to avoid going up the cobblestone hill on the way back to our hotel. While we were getting dinner we had a screaming baby in a restaurant. Mark thought it was funny because we were that family for the first time. There weren't many people in there so it was fine. We went on a ghost tour and Nicholas did good for about half of it and then got fussy so I carried him during the tour. Little man is getting heavy! We tried to watch some of the Carolina game at an outside restaurant after the tour but Nicholas had other plans so we watched it at our hotel. The next morning Mark let Nicholas try some yogurt and he loved it. I bought some Yo Baby Yogurt and he has eaten just about the whole container each time. Overall, we had a good trip. It is a lot different traveling with a baby.

Nicholas went to the pulmonologist today. His lungs sound great but he is going to keep him on Flovent through RSV season. He gets his first Synagis shot next month and will get one each month until RSV season is over. He weighed 16 pounds today. Still no teeth!

Teething

We took Nicholas to the pediatrician yesterday because of his weird poop thing. He has been going like 5 times a day and it is a lot looser than his normal 1 time a day. The doctor said it is from teething and saw 2 teeth coming in on the top. His bad diaper rash has caused a yeast infection so she gave us a prescription cream to use twice a day and said to use Aquaphor at each diaper change. We have bought more butt stuff in the past 2 weeks than we will ever need! At least we will be prepared when he gets more teeth along with the weird poop. He weighed 15 lb. 9 oz.

10 Months Old

Physical Therapy

Nicholas is ten months old today. I can't believe he is going to be a year before we know it. He has an appointment at the pediatrician tomorrow because he has had a weird poop thing for about 2 weeks. He isn't acting sick and doesn't' have a fever but we would feel better getting him checked out. He still has bad diaper rash because of all the poop so I hope they can give us prescription strength cream. They told me to get an anti fungal cream like Lotrimin to use in the mean time. We should also give him butt soaks in water with baking soda 3 times a day. His physical therapist came today and she said his neck control is slowly improving. We are to focus on rolling and supported sitting.