Reagan has lost the ability to go from a sitting or laying positing to standing. She has always done this with ease and sometimes with a little jump from the floor but it seems overnight that she can no longer motor plan well enough to make her arms and legs work together to get up and it seems to have just changed overnight. I know that losing skills is typical of the regression stage of Rett Syndrome, which is the second stage from around 18 months to 4 years where girls lose abilities that they once had. However, it is always really disheartening. On a positive note, she is walking well and the falls are minimal so it has not been a big problem unless she falls and lays down close to her baby sister, who will then insist on crawling on top of her play with her nose, mouth, or hair.
Today I am very anxious. You see, Rett Syndrome has been in the #1 spot to win $250,000 from the Pepsi Challenge all month. This would turn into $500,000 once it has been matched the the wonderful grant that is matching all donations to IRSF this year. Wow, half a million dollars to Rett Syndrome research...it would make a big difference.
I am anxious because as of yesterday, the second to last day of this month, we slipped to the #3 spot. And sadly on those in the #1 or #2 spots get awarded the money. I am begging, pleading, and begging again for all of you to VOTE today before noon!
The great thing about having two little girls is that I am able to reuse Reagan's baby clothes for Lauren. The bad thing is that going through the boxes and getting those 6-9 month clothes out for Lauren breaks my heart all over again. The pain that hits me is breathtaking, the kind that makes me want to curl up in a fetal position and cry for days on end. It is close to the pain that I felt 7 months ago when the phone rang and the nurse told me the painful news that our daughter has Rett Syndrome.
It is silly to me because the feelings are those of loss; feelings of remembering someone that is no longer with me. But, that is not true. I can hear Reagan in the next room going "ba ba ba" over and over again so I know she is here and I should not be mourning. However, I am mourning the lost dreams all over again. I can vividly picture her in each of the cute outfits and those images remind me of our innocence and nativity. They were carefree days, not days full of therapy, fighting insurance companies, or stressing over her future.
Today the girls and I had a fun pool play date with some close friends. Reagan has always loved the water and it was Lauren's first visit to a big pool. We had a great time and it was the best way to stay cool in this scorching Texas heat! I was a little (or a lot) intimidated on how I was going to manage both girls at the pool by myself. However, both friends were more than wonderful and helped without me needing to ask. I was able to give them both some individual time in the water while my friends helped out with the other one. So, thanks Gwendolyn and Erin...we enjoyed it! I wish I had some pictures to share but as you can imagine, there was not an extra arm available to snap some cute shots. Instead, I'll share some of girls in their new and stylish tutu's, courtesy of Maren! We love them, thank you!
This is the first time that I have been able to feed Reagan a meal without her arm braces since April, that was 4 months ago! A little history for those that aren't familiar with mouthing but without the arm braces she consistently puts her hands in her mouth, which can be a complete disaster if you just fed her a spoon full of yogurt. Mouthing is one of the many typical hand movements that girls with Rett Syndrome have.
There have been several occasions recently where she will not put her hands in her mouth for 30 minutes or so after she wakes in the morning or from her nap. This morning it last for 2.5 hours...I know because I looked at the clock every 10 minutes to time how long it lasted! I was so proud of her because I could see that she wanted to and would bring her hand up, but then we would have a talk about not needing arm braces anymore and she would give me a look to let me know that she understands, and her hand would come down. I know she wanted to mouth but she tried so hard until she just couldn't stand it any longer!
Yes, I definitely watch way too much Imagination Movers. But what can I say, it makes my 2 year old very, very happy! Today the girls and I went to the Children's Museum because Monday mornings are reserved for ages 3 and under. I thought this would be easier for Reagan to adventure around without older kids there. I want to continue trying to take her to places for typical children so she can have as much exposure to other children before she starts preschool next year.
She seemed to really have fun and explored every inch of the museum about 3 times...she walked, and walked, and walked. I tried to stay focused on the positives and not give into my emotions or anxiety. Reagan was having fun and that should have been all that mattered. But, I could no longer fight back the tears that were already on the verge when a woman was less than pleasant. She picked up her son and took him to a different part when Reagan walked to the area where he was playing. I then became the crazy lady with tears in her eyes for no apparent reason. Thankfully a friend was there so I could go to the restroom and regroup while she kept an eye on the kids. I ran into the same lady several other times, remember how I said we covered every square inch about three times?, and she would give Reagan a look each time. I don't know what her deal was! I am sure she was just curious and I was already emotional. But, it was different than the look I see from other parents out of the corner of their eye.
Anyway, back to the title. We will keep getting out there and trying places, especially if it makes the children happy. I know that Lauren also enjoyed seeing all the new sites while riding along in the Baby Bjorn. It has occurred to me though that I have not seen any other special needs children at any of the places that we have been going. I am curious what other families do...
This post is a little late, or 2 weeks late. But, I still wanted to share the cuteness of Lauren and marvel in the fact that she is 6 months old! Her sweetness just melts my heart and every day she makes me smile to no end. Happy half birthday peanut!
sitting still for the camera is no longer an option
Hi and welcome to our family blog! We have a 4 year old daughter, Reagan, who has Rett Syndrome and a 2 year old daughter, Lauren. This blog is to help others understand Rett Syndrome and to share our journey.