articles66

James - Andrea - Clarence

Andrea is 29 years of age.
We state that because many women ask
if age is a factor with regard to Moebius Syndrome.
Clarence was born on August 8, 2005

2-14-05

Hi there! I finally got the pictures to show you what Clarence looks like after the removal of his pins in his jaw. I also got to see x-rays of how far the pins were in his jaw and how the bones have grown since the surgery. Wow, what a difference. I am not to sure if I have any other pictures on my disks that I haven't sent but if I do I will definitely send them. I would like to thank everyone for all the emails showing their support and concern for my son. I can't tell how much that means to us right now. I will write again soon. Bye! ANDREA

3-17-05

Hi. I'm sorry I haven't been in touch but I have been busy. I spoke to the
family with the baby who had the distractors put in his jaw and it turns out
that the baby has pierre robin syndrome. This is what they originally
thought Clarence had then they told me moebius. Anyways, Clarence gave me a
good scare last week a couple of times. The hospital called me and said he
had a really rough night and he is not looking so good right now so I should
come in right away. I got their and they were scrambling with oxygen, his
ventilator, an iv pole, a blood gas, everything I could possibly think of.
They couldn't hear any air entry into Clarence's lungs. They were recently
trying to get him off his ventilator with swedish nose trials and his right
upper lung collapsed. I told them before hand that I thought it wasn't a
good idea to continue. I know my son and know what he is feeling but they
thought that I obviously didn't know better than them and they continued
against my wishes. This had me really upset because he ended up with a
collapsed lung, being sent to intensive care, and on life support. They
won't tell me why he was sent their but they are treating it as pneumonia
but they are not certain is what I was told. On the day he came back from
intensive care he went to sleep and at two in the morning they said his
heart rate dropped below 40 bpm and they had to give him chest compressions
and breaths. I keep asking questions about all of it but answers are very
vague and very few. Well the past two days he has been o.k and I am hoping
he will only get better from here so I put an end to this waiting game.
It's been eight months since I have been waiting patiently to take him home
without any idea of when that will happen. I have to go now but I will talk
to you soon.
ANDREA

This is a picture of him about two months old he now has these distractors or extractors or something in his jaw. There is four giant pins in his haw on both sides to correct it. I don't have the pictures developed yet so I can't show you what it looks like. I also tried to make this picture smaller because it is quite large and I don't know how to do that. It didn't do this before but I don't remember how I did it. If I ever figure it out I'll send the picture of my poor little guy to give others an idea of what he is going through. He is four months old and still in hospital with a trach, ventilator, g-tube, and many other problems. I am still waiting to take him home but don't have much of an idea as he is not medically stable yet.

Hello it's me again. I would like to share my thoughts but I have so many of them I don't know where to find time to do this. I will eventually get to this point soon I hope. Just be patient with me and I would love to send you some of my thoughts. I would just like to say for now that if anyone would like to contact me through emailing me they should feel free. Clarence is going to be on a commercial for probably only about a couple seconds but it is a commercial for the nurses union of Winnipeg, Manitoba. I still look forward to seeing him on the commercial anyways because I am so proud of my baby no matter what. I appreciate you taking the time to get back to me, thank-you very very much. Hope to hear from you soon. I will try to find some time soon to get some thoughts on paper and send them. Bye for now.

I just thought of something that I would like to ask the people visiting this site. The eye doctor that comes to see Clarence recommends that they put hypo-tears in his eyes every two hours and it doesn't do much he is still losing moisture. I was told that they want to put a stitch on the outer corners of his eye to help him close his eyes when he sleeps because it is eventually going to cause complications. I just wanted to know what other people in his situation are doing that would help to avoid this. I just think it's not something I want him to have if there is something better we could try. Hypo-tears are vaseline and mineral oil I think. Any suggestions would be great! ANDREA

5-17-05

Hi there. I just wanted to let you know how Clarence is doing. He is doing a little better since last time I wrote. He is getting really big - 20 pounds now - and starting to be a little more playful. He now has a wheelchair called a kid cart that should be ready in a couple of weeks which cost about $4000. Hopefully they will let Clarence go to the playroom on another floor soon.

He has been out of his room about five times only to go to music group on the ward. He fell asleep during the session but at least he got to go. As for going home - I still haven't been told a date yet. He
needs to stay stable for two months and so far he hasn't shown any signs of stability yet but I am still keeping my fingers crossed. I am hoping he will be coming home soon, I am running out of patience I want him to see him home for the first time before this year is over. I pray all the time and wish he will come home.

I will write again soon since I have more pictures of when a dog came to the ward to visit the children in the playroom. Clarence wasn't able to go to the playroom that day but the dog came in to his room to visit. I don't even think it phased him that it was a dog because he just woke up before he got there. Anyways I will keep you posted.