First off, I have lots of pictures to post of the summer, but seem to have no time these days, so I'll get them up soon I hope. Hard to believe that summer is over, and Morgan starts grade one!!! Paige will be going to pre-school, but that starts the following week I believe; I'm waiting for the registration package to arrive.
Ella and I saw the plastic surgeon two weeks ago. Auntie Sarah was able to come which was great for me. It was very helpful to have another pair of ears there. After reviewing all of Ella's test results (the MRI and CT scan) it has been determined that Ella has Moebius syndrome. It is a very rare nerve disorder, that is usually bi-lateral. It is even rarer to have it be unilateral as in Ella's case. The good news is that from what I have been reading, it seems to be quite mild. Moebius syndrome is primarily characterized by absence or underdevelopment of the 6th and 7th cranial nerves. The 7th cranial nerve is the facial nerve, and in Ella's case it is underdeveloped, and it is also unclear as to whether or not it is rooted properly to the brain stem. The 6th cranial nerve doesn't appear to be involved because it controls lateral eye movement, and Ella is able to move her eye from side to side. We are being referred to Sick Kids to the plastics team there. You can read about their work here: www.sickkids.ca/smile-surgery/moebius.asp
There is also some information at the Moebius Syndrome Foundation .
So now we wait some more...Eye doctor is this week; her eye is my main concern (keeping it protected), the we see the ENT, cardiologist for an ECG (no big deal, pediatrician just heard a mild murmur and wants to check), then we see the geneticist. That should be a good appointment as the pediatrician has now told me that my questions are beyond her knowledge.
So, I'll keep digging, although my time on the computer is very limited these days. So if you find anything worth reading, leave a comment and send it our way. Since it is such a rare thing I need all the help I can get in the research department. So now we wait to hear when we go to Sick kids, I'm going to call our plastic surgeon's office here to find out if they've heard back yet. I'll keep you all posted, and get some pictures up soon. On a happy note, she is growing well, eating veggies as well as cereal now, and wanting to crawl, although I've been watching her and she rolls to get where she wants to go. She's a really happy baby.
Well that's it for now, hopefully pictures tomorrow.
Love to all. xxoo
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3 comments:
I'm glad to hear that you have finally recieved the diagonsis. You've been referred to a great hosptial and an amazing plastics team. Madison's has spent the last 6 yrs with Dr. Phillips and Dr. Armstrong, and has many good memories.
Love to the Girls!
Claire
Not to be overlooked is the impressive way in which you have been steering Ella through this complex process, keeping this appointment and that in mind, reflecting on what each bit of finding has contributed to the over-all picture, all the while continuing to be a wife to a busy man and a mother to two lovely and active children. The stability of home that you make possible through all your work is and will be an important part of Ella's treatment,as it is for Morgan and Paige as each of them enters a new phase in their young lives. Take care of yourself in all this, Dear, and make sure that others take care of you. We love you very much. xoxox
Thanks so much for the update -- we'll wait eagerly to hear more when you've seen the plastics team in To. I know they do excellent work at Sick Kids, and the rarer the problem, the more intense their engagement with it, which is good.
For light relief in the meantime, you might like to peek at another blog: johnandkathleen.blogspot.com !! The Edmonton cousins send love.
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