Wednesday, October 27, 2010
We met with Dr. Jang today to setup Nick's lip adhesion surgery. Right now he wears tape across his lip to hold it together and the surgery will basically take the place of the tape. Wearing the tape has already made his face look different. Before the tape his profile was flat, you couldn't see his nose. But it's looking great now, his cheeks are getting quite chunky and that helps too. The surgery will be November 15 and I am not looking forward to it. Knowing the risks of surgery is scary and having him taken away for me, even if it's only a couple hours, is going to be very hard. Plus, he won't be able to eat for 4 hours before the surgery and I know that won't be fun either.
This is not his formal lip surgery, he will have that at 6 months old. This surgery will keep his cleft from becoming wider and will allow a better overall outcome when he has his formal lip repair.
We have a therapist that comes every other week to work with Nick. She helps me figure out some good exercises for him. Right now we are trying to get him to be able to lay on his stomach. His muscle tone is pretty tight so it's hard to get him to straighten his arms out but the more we work on it the better he seems to get which is reassuring. He still has to wear splints on his hands for his fingers. The contractures are still pretty tight but the splints seem to be helping.
He weighed in at 11 lbs today! He is really filling out and his legs have quite a few dimples!! All of my kiddos have been pretty chubby babies and I don't expect Nick to be any different :o) He loves to hear rattle sounds, it's the one thing that gets him to smile every time! It's very cute!
As always, thank you for the continued prayers.
Sunday, October 10, 2010
Nikolas met with the opthamologist at Children's Mercy on Thursday. It was not fun because he hates his eye's being touched, and especially being pried open then having a bright light shown in them. Thankfully, they did not have to use the horrible speculum things again, oh my those things are torturous! She explained to me how coloboma's are formed: when babies are forming in utero their eyes are like tubes coming off their brains, then as they continue to form they become upside down u's, and eventually they reform to create o's again and form the whole eye. Well Nick's eyes did not come completely back together and unfortunately this is the same with his retina's and optic nerves. She said he will probably have functional vision but she couldn't say to what extent. There is nothing they can do either, maybe he would need glasses one day, but there's no procedure they can do. She gave me a bunch of information about services for children for the visually impaired.
Wow...I am not sure why but I took this pretty hard. I was really praying (and still am) that he would at least be able to see normally. I feel that he can see a little bit and if you are talking with him and playing with him he will smile, but I'm not sure if blind babies smile...
I really am having to just keep reminding myself that God is in control and that He gave us Nikolas for a reason, otherwise I think I would be a total mess.
Sunday, October 3, 2010
Nick had another ABR test done on Monday to recheck his hearing and he did great! They said his right ear has pretty normal hearing, he is right on the borderline for abnormal with the high tones though. His left ear is a little worse and the test showed that he has slight hearing loss at all tones. But he still has fluid in his ears and that could cause the test to not be as accurate. He will have another ABR done while he is sedated for his lip repair. Yesterday we met with Dr. Ursick, which is his ENT. He said that he will need to have tubes put in at 6 months, and they will combine it with his formal lip procedure. There is a slight possibility that he could have issues with having the tubes in, his doctor explained that with his cleft there is a chance that his throw-up could come out of his ears and that could cause ear infections but if he didn't have the tubes it would be in his ear drum anyway so it's better that it drains if it can.
He weighs 9 lbs 11 oz! He continues to eat very well and is growing like a weed! He still sleeps A LOT but when he is awake he is looking around and squirming. He still doesn't like to be on his tummy and he has a hard time moving his arms to help him push up but we are working with a therapist through Infant Toddler Services that will hopefully be able to help him.
He doesn't sleep through the night but might sleep for 4-5 hours at a time which is really nice for me!
He has an appointment next week with the eye doctor so hopefully she will be able to tell us more about his eyes and how much he can possibly see.
Thanks for keeping us in your thoughts and prayers!