Friday, January 13, 2012

Lots going on!

So it's been awhile since I have written and we've had lots going on. Where to start...(sorry this is going to be long!)
We had a wonderful Christmas with family! My grandparents flew down from Minnesota, two of my sisters (and a boyfriend) and my brother flew in from Texas, Nevada and Florida and more siblings came from Manhattan, Kansas. My parents definitely had a full house...oh and my Aunt from Minnesota surprised us all on Christmas day! We had such a wonderful and blessed time! Nick loves Christmas lights so he always has the best time watching those when we put him under a Christmas tree, he'll also unravel some beading if he can get his hands on it!

Well Nick's eye is still healing. I would call it 'meaty' looking but his doctors say 'oh it looks good'.  Well since he has no lens in his right eye anymore they have to replace it with something. They wanted to put in a contact lens but even 2 months post-surgery the Optometrist felt like his eye was not healed enough and thought that putting in a contact lens would cause discomfort and irritation. 

So instead Nick got glasses! He looks so cute and grown-up!

They don't stay on as well as I had hoped but he doesn't mind them too much, we just have to realign 
them on his face all the time. We also patch his left eye for half the day to strengthen his right eye.

The retinal specialist here in Kansas City, Dr. Poulose, checked out his retina again last week. He saw a lot of scar tissue on Nick's retina. Not a good sign. Dr. Carvounis (the doctor from Houston) said if scar tissue would start to develop, he would try once to remove it but it's rare that it would work and if scar tissue continued to form there is nothing they could do because his eye would become very fragile and the chance of him losing his eye would be high. Dr. Poulose felt that because Nick's retina was already so fibrous, that even trying once to remove the scar tissue would be too risky. He felt like Nick's eye was stable, it wasn't irritating him and to mess with it would lead us down a path that would ultimately lead to needing the eye removed. Of course, I want Nick's to have the best possible vision he can. But I also feel that any vision is better than none. We will take the more conservative route and leave his eye alone. I would hate for him to loose his eye at this point. 
In March or April they want to sedate Nick so they can look at his eye's better and make sure the retina is still attached in his other eye.

We also met with the cleft team this past week. His surgeon, Dr. Kaye, feels that we could still wait to start repairing his palate but she said there have been recent studies that show that fixing his palate could  possibly help with other issues he has been having, like his reflux and aspiration issues. She wanted to discuss Nick's case with one of her partners first before deciding to do his palate this summer or wait until she feels he's bigger and more ready.
Dr. Burleson, an orthodontist, is part of the cleft team as well and he wants to get some X-rays of Nick's mouth. He wants to make sure that there are adult teeth and that he will have room in his cleft area for his teeth. It's a hard X-ray to get so they will do it when they put Nick under sedation for his eye exam.

We also met with his neurologist this week. I tried to explain these flailing type movements Nick has sometimes. I even had a few video's of Nick doing it that I showed her. Let's see if I can explain them...
Occasionally, without any type of stimulation that I can see and only while he's laying on his back or side, he will jerk his arms out and get a scared look on his face. If I am close to him I put my hand on him or pick him up and then he's fine. But if I don't, if I'm not right there to help him he will continually flail his arms in a jerking pattern and will eventually start to cry like something horrible is happening. If it gets that far it will happen over and over again throughout the day. In one of the video's that I showed her she felt like it could be a seizure, possibly infantile spasms which are very detrimental. So we are doing another EEG next Thursday to rule them out. I honestly feel like he has vestibular issues and actually feels like he is falling and gets scared. 

Here are a couple video's of what happens, they are not recent, one is early 2011 and the other is around -Easter 2011 (notice the candy!)-

He's so chubby in these video's! I just want to reach through the screen and pinch his fat cheeks!!

One last thing, Nick went to a seating clinic where they measure him and figure out the best devices for him in everyday life. They recommended a few things including a Kid Kart. Well Nick's insurance doesn't cover any type of seating or mobility device beyond a wheelchair so we were going to have to find funding or borrow from a coalition (as it's a rather expensive item). Well a wonderful family donated a Kid Kart to us! Their daughter had outgrown it were no longer in need of it! We are so blessed and it is exactly what Nick will need. It also came with a booster base that we can use at home and will be perfect for some therapies and allowing Nick to sit upright. We cannot be more grateful to such a wonderful family for thinking of us!

Nick thinks it's just great!

I lied, one last thing! We had a 4d ultrasound done just before Christmas and got some great shots of Carsen :o) He is still looking healthy! We have one last ultrasound to double check everything next week.