My first Rett Syndrome conference…..
My mind is still sorting through all of the information that it took in over the weekend. The conference was great! Meeting other moms was so good for me; it was what my heart needed. There are so many times that I feel alone in “all of this.” I honestly do not know why. I have an amazing husband (who by the way had a FABULOUS weekend with Brooklyn while I was in Chicago – SHE RODE A HORSE FOR THE FIRST TIME!!!!) I have an amazing and supportive family including my mother who is Brooklyn’s daycare provider so that I can continue to work full time. I have great friends that talk with me and pray for me but there is just something about talking with another mom raising her Rett daughter that helps me pick my self up, dust myself off and keep going. No one understands me quite like they do. Who else can talk PT, OT, Speech, wheel chairs, adaptive communication, AFO’s, hand wringing, seizures, acid reflux, insurance, and MUCH more all while laughing (and sometime crying) with me? Thank you again ladies!
The presenters were AMAZING. I sat through some Communication sessions that were mind blowing. It is SO great to hear specialists remind us that our girls are “in there” and they are SMART! It is up to us to be their voice, to help find their way through communication using eye gaze, switches, head pointers, partner assisted scanning, and anything that works! They gave us such great ideas on making it all fun for Brooklyn too. I hope that in the future you will be seeing LOTS of great video footage of Brooklyn as I put some of their advice into practice!
There was a great physical therapist that gave us great tips on working with our girls and opened our eyes to new forms of therapy like: the igallop, WBV, and even using an adaptive treadmill to work on walking.
They also gave us lots of hope and encouragement during the informative scientific research sessions. A cure is obviously a dream of mine but there are hopes of treatments as soon as 1-5 years away and even gene therapy 10 years out. Please continue to pray for a cure!
My mind is still sorting through all of the information that it took in over the weekend. The conference was great! Meeting other moms was so good for me; it was what my heart needed. There are so many times that I feel alone in “all of this.” I honestly do not know why. I have an amazing husband (who by the way had a FABULOUS weekend with Brooklyn while I was in Chicago – SHE RODE A HORSE FOR THE FIRST TIME!!!!) I have an amazing and supportive family including my mother who is Brooklyn’s daycare provider so that I can continue to work full time. I have great friends that talk with me and pray for me but there is just something about talking with another mom raising her Rett daughter that helps me pick my self up, dust myself off and keep going. No one understands me quite like they do. Who else can talk PT, OT, Speech, wheel chairs, adaptive communication, AFO’s, hand wringing, seizures, acid reflux, insurance, and MUCH more all while laughing (and sometime crying) with me? Thank you again ladies!
The presenters were AMAZING. I sat through some Communication sessions that were mind blowing. It is SO great to hear specialists remind us that our girls are “in there” and they are SMART! It is up to us to be their voice, to help find their way through communication using eye gaze, switches, head pointers, partner assisted scanning, and anything that works! They gave us such great ideas on making it all fun for Brooklyn too. I hope that in the future you will be seeing LOTS of great video footage of Brooklyn as I put some of their advice into practice!
There was a great physical therapist that gave us great tips on working with our girls and opened our eyes to new forms of therapy like: the igallop, WBV, and even using an adaptive treadmill to work on walking.
They also gave us lots of hope and encouragement during the informative scientific research sessions. A cure is obviously a dream of mine but there are hopes of treatments as soon as 1-5 years away and even gene therapy 10 years out. Please continue to pray for a cure!
Despite the amazing experience, I was SO glad to get back home to Charlie and of course Brooklyn. For those of you who need a daily Brooklyn "fix." Here is an adorable new photo of her....
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6 comments:
kel, she does look skinny! Send her down south for awhile---I'll fatten her up! :)
that iGallop is very cool--I'll have to tell Ms.Cindy(PT) about it.
Kelly, your post is so true...As I continue to find a way to process everything from the weekend, I got a little teary reading your post. It is sooo nice to know I'm not the only mom out there who's daughter has this monster living inside of her...
I bet Brooklyn was so happy to have her mommy home! I can't wait to meet her someday too!!
We are so glad you had such a great experience at the conference. I can't imagine what it meant to meet so many other amazing Moms who understand what you all are going through. We love and miss you all! Brook, you are such a cutie! Sam asked to see your picture yesterday. I think we need a Butler visit soon!
OMG seriously.... she is soo cute! That hair of her's is just gorgeous. I want Ava's to grow long so bad and her dimple as always is infectious!!! I bet you were sooo happy to come home to that smile you know so well. Glad you bonded. That's just what you needed!!!
The conference must have been a LOT to take in and probably seemed overwhelming in many regards, but knowledge is power! I am glad you had a great experience
Brooklyn looks so precious as always!
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