Not much going on

Nicholas is doing well. Nothing really has been going on. He is getting physical therapy once a week and he really needs to increase his neck strength. We are doing exercises to work on that. He has his first case of diaper rash right now. Poor little bum. It is looking a lot better than it did a few days ago.

Our third attempt for a new computer should work so hopefully we will have that soon and be able to post pictures again. The first computer was lost in Fed Ex land then the second one was lost in Dell land. We canceled after they said they had no clue where it was and and ordered from some where else. I just got an email saying it has been shipped so I'm crossing my fingers this one shows up. Here are some old phone pics from his last surgery and one from yesterday.

All Better

Nicholas seems to be recovered from his surgery. His incisions look good and still have a little bit of scab to them. It doesn't seem tender or to bother him. He regressed a little with his head control since we weren't able to do his exercises for about 2 weeks. We started them again and physical therapy comes out on Tuesday. He had 3 weeks without PT because she was on vacation and then we had the shunt malfunction. Hopefully he will get back on track quickly. He is trying so hard to roll over but can't get it yet. He gets both arms in the direction he wants to roll and turns his head face down but he can't get his hips over. He even swings his top leg out to get some momentum but it hasn't worked. Hopefully soon. Everything has been pretty slow for us. We don't even have any doctor appointments until mid September. September also brings RSV season so Nicholas will be on lock down and we can't take him anywhere so he doesn't get sick. Our new computer should be here this week so we will be able to post pictures again.

Back Home

Nicholas came home from the hospital Saturday afternoon. He did so well with this surgery and is recovering well too. Both a PICU nurse and a children's hospital nurse commented that his lungs sound great and not like most chronic lung disease babies. It was also nice to see our favorite NICU nurses who visited us in the ER

He seems to be back to his old self. He is eating just about the amount he was before the shunt malfunction. We canceled physical therapy again and aren't doing his exercises right now. We are going to give his tummy some time to heal and start PT again next week. He doesn't seem to mind the incisions on his tummy and has a ball during floor time. Last night he was trying so hard to roll over. He had his top arm all the way over to the other side and was turning his head face down. He just couldn't get his hips over. Mark shaved the rest of Nicholas' head on Sunday. We saved the hair and Mark put a note in the baggie saying who the Cubs were playing. We have a little baldy now!

Shunt Revision

We took Nicholas back to the ER yesterday for another CT and x-rays. The ER doctor had neurosurgery diagnosis him this time and it was a shunt malfunction. I told the ns about Monday's visit to the ER and the flu diagnose. He said that parents of kids with shunts usually are right when there is something wrong and know more about them than the ER doctors. It is nice to know I knew what I was talking about and was right on Monday, but I really think the ER docs need to know this too. The neurosurgeon was able to tap out 50cc of cerebral spinal fluid and his soft spot went down and he was acting like he felt a lot better. The ns said that since he was able to get fluid out the part in his brain was working and the problem was with the tubing. He was admitted to the PICU last night. They did surgery this morning and found a blockage in the tubing. They were able to replace it and they put it in a different spot in his abdomen. Nicholas has 2 cuts on his tummy- one from removing the old tubing and one from putting in the new. The good news is that they didn't have to go into his brain. They still had to prep his head so half of it is shaved. The poor guy's hair just grew back from the last revision. He was off the vent right away which is so wonderful. I was worried about that since he had such a hard time coming off of it last time. They are giving him a little oxygen but he was satting 97-100 with it not on his face so he is good with his breathing. They want to keep him in the PICU for at least 12 hours so he may or may not spend the night there tonight. I will know more later and hopefully he will be home in a few days.

Back to the ER

We are headed back to the ER for another CT. His pediatrician didn't feel comfortable with his head so she recommended we go back. We totally agree and never felt that the stomach flu was the right diagnosis. Other than a possible shunt malfunction his pediatrician said he is doing great.

ER Visit

We took Nicholas to the ER last night. His soft spot was bulging, he vomited his dinner, and he was crying and whimpering like we've never heard him do before. Those are all signs of shunt problems and when they appear we have to take him to the hospital. He vomited 6 more times at the hospital. They took x-rays to follow the shunt tubing from his brain to his stomach and did a CT scan of his brain. His shunt is working just fine. They diagnosed him with the stomach flu. The doctor said that any pressure in his stomach will travel up the shunt tubing and make his soft spot swell even though the shunt is working. Thank goodness it wasn't a shunt problem. Nicholas has been a crabby little boy. He was up just about all night and is crying and whimpering still. He hasn't vomited since we got home from the ER. We are giving him Pedialite today and are going to see the pediatrician tomorrow. Nicholas also turned 9 months old last Saturday. Can you believe it, our little boy is getting so big. We had to cancel physical therapy today but she will be back next week. Our new computer is coming today or tomorrow so I will be able to post pictures again soon.

ABR #3

We went to MUSC in Charleston today to finish Nicholas' Auditory Brain Stem Response hearing test. He slept and we were able to finish it this time. He had no response at any frequency up to 100 decibels, which is the loudest the test goes. It is equivalent to a helicopter or a rock concert right next to your ear. So this means he has profound hearing loss and is deaf. We also met with the surgeon who does the cochlear implants. He feels the implant is the way to go and we agree. I brought the CT scan from his shunt surgery and they were able to see that he has a cochlea, which is good. We still need to get an MRI done so they can see the cochlear nerve which is needed to be able to hear with the implant. The doctor said he has never seen a deaf person without the nerve so he strongly feels he will have it and will be able to get the implant. We are going to do the MRI here in Columbia in October and we go back to MUSC to meet with the surgeon and the audiologist in November. We will have to try hearing aids first because the FDA and insurance requires the trial before a person can get the implant. The hearing aids won't allow him to hear though. Surgery for the implant will be Jan. or Feb. when he is around a year adjusted.

Goodbye Grandma

Well, we are at the end of Grandma Terri's visit. Nicholas had a great time with her and so did Mark and I. Nicholas went shopping with us twice this weekend and was a good boy. He is doing well holding his head up. Grandma says she can already see a difference in his head control just from when she got here until now. Our physical therapist is on vacation next week so he won't have a work out with her. We are doing his exercises and he is doing well. We are going back down to Charleston to try to finish the ABR hearing test next Thursday.