A choreographer couple has a daughter with Rett Syndrome and dedicated their dance to their daughter...one of the couples on so you think you can dance did a beautiful job....link below for anyone wanting to see....
http://www.youtube.com/watch?v=-2VRAHRbmT8
Monday, June 23, 2008
Tink....
HEY>>>>it's my first glitter graphics...now hopefully my blog will be a little more interesting...Tinkerbel is my favorite character in honor of Kelly, my little pixie who won't grow up...or should I say doesn't grow up....I wonder if she would if she could or does she know something we don't. They say special needs children are actually angels sent from heaven to help others on earth...maybe she knows a lot more than we think...problem is she's not talking...or maybe she just doesn't want to....????
Life is Good
OK...so life is not perfect as a matter of fact at times it really sucks but for today...for this moment life is good. Lief is on vacation this week and next. Kelly is out of school until July 8th and then she starts extended school year, six weeks over the summer so she does not lose the skills she is starting to show.
Sabrina is out of school until Sept. but will have some half day classes at the local school to keep her occupied. I'm planning our trip down the shore starting Thursday, LBI here we come. Money is tight...gas prices are starting to affect us,..Lief's job is stressful...but life is good. I'm content...my daughters are beautiful and smart. I keep thinking that if Kelly has the same intelligence that her sister Sabrina shows and the the developmental delays are affecting her but she can understand so much now...or at least I think she understands....I wonder how really smart she would have been without Rett syndrome.
I love my husband...he's wonderful...I really like living in our new town...well it'll be four years this August...time flies...we moved here when the girls were six months old. They are four years, four months and three weeks old today.
Life is good...
Sabrina is out of school until Sept. but will have some half day classes at the local school to keep her occupied. I'm planning our trip down the shore starting Thursday, LBI here we come. Money is tight...gas prices are starting to affect us,..Lief's job is stressful...but life is good. I'm content...my daughters are beautiful and smart. I keep thinking that if Kelly has the same intelligence that her sister Sabrina shows and the the developmental delays are affecting her but she can understand so much now...or at least I think she understands....I wonder how really smart she would have been without Rett syndrome.
I love my husband...he's wonderful...I really like living in our new town...well it'll be four years this August...time flies...we moved here when the girls were six months old. They are four years, four months and three weeks old today.
Life is good...
Thursday, June 19, 2008
Wish I could post their beautiful faces...
OK....so this was the beautiful birthday cake I made...it was suppose to be a castle with draw bridges but Sabrina saw this carousel and wanted it instead....except the cake pans I had were too small in diameter and definitely did not fit the size of the carousel....oh well....
pictures...if I can...
Kelly gazing off and thinking....Mom....that's not my face....I'm over here now....
Shame on me....
I haven't blogged in three months....shame shame on me...sorry for any one who really cares...
I would blog more often if I could post pictures of my beautiful girls but I promised Lief I wouldn't. It would definitely be more interesting if I could...I will post an occassional back or side view...he can't get too mad at that.
Kelly was seen by a new Pediatric Neurodevelopmental Dr....and whereas there was nothing new to add....she did suggest Kelly see a Pediatric Physiatry...a doctor of physical therapy I guess. That doctor can suggest adaptive equipment, chairs etc that Kelly might benefit from. I've only had her get PT through early intervention since she's been 9 months old and now through school. I never knew there was a medical doctor in that field and now one ever suggested I go. I think will continue to see the new neurodevelopmental dr too since she made the suggestion. Kelly sees so many doctors but I will change if I don't get that "warm fuzzy" feeling that Kelly really matters to the dr or if the dr isn't very proactive. The last neuro was too laid back...after we got the Rett diagnosis she sent me printouts from the internet that I had alreay read, nothing very positive so we moved on.
School is out at least for a while. Sabrina will have a few summer classes at the local school for arts and crafts and they have a playground for outside playing with her friends. and she starts swim lesson Saturday. Kelly is off of school for three weeks. We're going to Long Beach Island for three days next week...can't wait. She'll have summer school from July 8th through Aug. 15th and then off for another three weeks until next semester starts Sept. 4th ???? She's also having a few swim lessons from on OT in July.
almost forgot...kelly did #2 on the potty three times last week and #1 once.....woooo hooo.....
We're waiting for approval on a wheelchair/ stroller for Kelly. Hopefully it'll be approved soon.
Well, gotta go...blog ya' later.....
I would blog more often if I could post pictures of my beautiful girls but I promised Lief I wouldn't. It would definitely be more interesting if I could...I will post an occassional back or side view...he can't get too mad at that.
Kelly was seen by a new Pediatric Neurodevelopmental Dr....and whereas there was nothing new to add....she did suggest Kelly see a Pediatric Physiatry...a doctor of physical therapy I guess. That doctor can suggest adaptive equipment, chairs etc that Kelly might benefit from. I've only had her get PT through early intervention since she's been 9 months old and now through school. I never knew there was a medical doctor in that field and now one ever suggested I go. I think will continue to see the new neurodevelopmental dr too since she made the suggestion. Kelly sees so many doctors but I will change if I don't get that "warm fuzzy" feeling that Kelly really matters to the dr or if the dr isn't very proactive. The last neuro was too laid back...after we got the Rett diagnosis she sent me printouts from the internet that I had alreay read, nothing very positive so we moved on.
School is out at least for a while. Sabrina will have a few summer classes at the local school for arts and crafts and they have a playground for outside playing with her friends. and she starts swim lesson Saturday. Kelly is off of school for three weeks. We're going to Long Beach Island for three days next week...can't wait. She'll have summer school from July 8th through Aug. 15th and then off for another three weeks until next semester starts Sept. 4th ???? She's also having a few swim lessons from on OT in July.
almost forgot...kelly did #2 on the potty three times last week and #1 once.....woooo hooo.....
We're waiting for approval on a wheelchair/ stroller for Kelly. Hopefully it'll be approved soon.
Well, gotta go...blog ya' later.....
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