I cannot tell you how overwhelmed I am at the influx of emails I've received fom the Angelman community. Not just "hi, nice to meet you"emails either....detailed histories of their children, links to their blogs or photo/video sites and most of all kind words of understanding and encouragement. If you're feeling low just check out some of the blog links on the left of this page, very inspiring!
After receiving a diagnosis like we did with Joey the immediate reaction for a lot of people, including us, was this giant sense of being lost. Not knowing where to start, who to talk to, where to get reliable information etc. Luckily for us we weren't lost for too long! There's lots out there to read but nothing is more valuable than what other parents of Angels have to say.
We are already so excited about the "Walk of Angels" fundraising walk-a-thon taking place in Montreal in May. Grandmere, Grandma and Papa have already said they want to come, and I have a feeling there will be more to join us. We so looking forward tomeeting so many of he people that have provided us support over the past few days.
It's amazing to me that this sweet little boy, who has no idea that his world is any different than it was a week ago, has this ability to bring so many of us together in such a positive way. In addition to "Monkey Boy"and Bubbin"one of the nicknames that Joey has had for a long time now is "My Sweet Angel Baby". Who knew how fitting this would become?!
So today we met with Joey's pediatrician. He didn't have much to tell us, except that we should cancel all of the tests that were scheduled for April 29, keep the appointment at Sick Kids Feeding Clinic on March 31 and forget about scheduling an EEG at this point. The geneticist suggested that this might be a good idea, since the majority of Angels experience seizures which usually start around this age, but he feels that this test would be purely academic at this point and we will treat seizures if/when they occur. We've contacted Erin, Joey's lovely speech-language pathologist, and are ready to move forward with this new information and are meeting March 6 to discuss new techniques and strategies to assist Joey to communicate.
Onward we go. We're still having good moments and bad moments, it's a lot of new information to take in, but I'm hopeful that our good moments will outweigh the bad sooner rather than later.
Tomorrow I will add some gorgeous new photos of my favourite subject :)
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1 comment:
The first two weeks for us after diagnosis were really the hardest. You are so right, that our little ones do not even know there is any difference in the world. I remember walking in to Little J's room the day after he was diagnosed and just seeing his beautiful smile. Know that we are here if you need anything as well.
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