I love this picture!
Superhero cousins
PJ party
Pool time!
So exciting!
Tante Erin and cousins Evie & Ellie
Abby's first visit to Boston for the IGF-1 Trial
12 years ago
Wednesday, May 23, 2012
Superheroes
We took a weekend trip back to Texas for a getaway to visit with the cousins. The girls always have a blast on these trips and it feels like a mini-vacation, complete with jumping on hotel beds, pizza and princess movies, an afternoon in the pool, and lots of games of chase in the hotel hallways (sorry for those trying to sleep!). And no cousin reunion is complete without matching superhero capes!
Monday, May 21, 2012
Wednesday, May 16, 2012
Dare to Dream
The phrase among our small Rett community today has been, "dare to dream" as exciting news on the research front has been announced by IRSF! The news came on a day when I needed a glimpse of hope, something to remind me that it is okay to dream of a cure for my girl.
I have learned that one of the many stages of grief is acceptance. It does not mean that I have to like Reagan's diagnosis, but on most days I go about our daily life and accept our new reality. It has taken about 2 years to get to this point. There were many days of crying over lost dreams for my daughter before I came to terms with her diagnosis. So it is a rare day lately that the "what if's" get me down as I try to keep those thoughts out of my head. But there are still days that it hits me out of nowhere and my heart breaks for my baby girl and last night was one of those moments. I was putting her to bed and just became incredibly sad and the tears started flowing.
Today the tears were for a different reason, they were for hope after reading this news update about the possibility of an upcoming clinical trial that will help children with Rett. Here is the link: Rett clinical trial information.
I have learned that one of the many stages of grief is acceptance. It does not mean that I have to like Reagan's diagnosis, but on most days I go about our daily life and accept our new reality. It has taken about 2 years to get to this point. There were many days of crying over lost dreams for my daughter before I came to terms with her diagnosis. So it is a rare day lately that the "what if's" get me down as I try to keep those thoughts out of my head. But there are still days that it hits me out of nowhere and my heart breaks for my baby girl and last night was one of those moments. I was putting her to bed and just became incredibly sad and the tears started flowing.
Today the tears were for a different reason, they were for hope after reading this news update about the possibility of an upcoming clinical trial that will help children with Rett. Here is the link: Rett clinical trial information.
Wednesday, April 25, 2012
I took a break
I've been thinking all day about how I have not been writing in this blog much and sharing Reagan's story as I have in the past. It is not because I don't want to share and really didn't realize until today how infrequent I was posting or reading Rett related stuff. I think my subconscious forced me to take a break from all things Rett Syndrome. Obviously that excludes taking care of my sweet daughter that has Rett.
I not only stopped blogging over the past several months, but I also stopped reading the blogs. I feel like maybe I had an emotional shut down in regard to Rett and had to take a step away from all of it to get a clear head again. There is no doubt about it that having a child with Rett Syndrome can be (and usually is) overwhelming most of the time. There are the medical issues and concerns due to the multiple disabilities, there is ensuring that she is getting a fair and proper education, there is tending to her basic needs which are extensive since she is fully dependent on an adult for all of her needs. I didn't want to write about all the struggles we are facing and how overwhelmed I feel. I didn't want to read a close friend's blog and hear of the struggles that they are facing and feel so helpless that my Rett family is hurting. I shut it all out and stayed in a bubble.
But, now I am missing expressing myself, posting update and not knowing all that my Rett family is facing, the good and the bad.
Quick update - Reagan has started the night screaming spells again last month. They usually start around 2am and she can not go back to sleep afterwards. We are running a couple of gastrointestinal tests on Friday to start the process of elimination because the previous explanation/reason is no longer applying and it makes me so sad to see her in pain every night. Second, Reagan continues to love going to school and her therapists are working with her diligently on using eye gaze and switches. I am so thankful for the people that believe in her and continue to encourage her to do her best. Lastly, she also continues to get upset when we go out in public. I have concluded that she feels insecure in her wheelchair so we have ordered her a different type of wheelchair that is more similar to the past stroller that she used before the screaming fits in public started. Please keep your fingers crossed because we really miss going out as a family.
I not only stopped blogging over the past several months, but I also stopped reading the blogs. I feel like maybe I had an emotional shut down in regard to Rett and had to take a step away from all of it to get a clear head again. There is no doubt about it that having a child with Rett Syndrome can be (and usually is) overwhelming most of the time. There are the medical issues and concerns due to the multiple disabilities, there is ensuring that she is getting a fair and proper education, there is tending to her basic needs which are extensive since she is fully dependent on an adult for all of her needs. I didn't want to write about all the struggles we are facing and how overwhelmed I feel. I didn't want to read a close friend's blog and hear of the struggles that they are facing and feel so helpless that my Rett family is hurting. I shut it all out and stayed in a bubble.
But, now I am missing expressing myself, posting update and not knowing all that my Rett family is facing, the good and the bad.
Quick update - Reagan has started the night screaming spells again last month. They usually start around 2am and she can not go back to sleep afterwards. We are running a couple of gastrointestinal tests on Friday to start the process of elimination because the previous explanation/reason is no longer applying and it makes me so sad to see her in pain every night. Second, Reagan continues to love going to school and her therapists are working with her diligently on using eye gaze and switches. I am so thankful for the people that believe in her and continue to encourage her to do her best. Lastly, she also continues to get upset when we go out in public. I have concluded that she feels insecure in her wheelchair so we have ordered her a different type of wheelchair that is more similar to the past stroller that she used before the screaming fits in public started. Please keep your fingers crossed because we really miss going out as a family.
Happy 4th birthday!
Wow, I have been horrible at keeping up with this blog lately. It has been 2 months since Reagan's 4th birthday and I never wrote about it! If I had to guess, I would say that Reagan enjoyed her special day. She smiled big while we sung happy birthday to her, briefly tolerated using her switch to activate a happy birthday song on the computer, and then lost interest shortly after when we started opening presents.
It is so hard to believe that my first baby girl is already 4 years old and I will be honest in saying that I did not take it too well. Four just sounds so much older and officially makes her a little girl. I guess the sadness is because I want her to stay young forever in hopes of keeping more of the Rett symptoms from showing up or the existing ones from getting worse. I want her to still be 3 years old *when* the cure for Rett is found. I don't want it to be another year that has passed that the Rett monster has controlled her little body. Thankfully I think Reagan is happy most of the time and in the end that's what matters.
It is so hard to believe that my first baby girl is already 4 years old and I will be honest in saying that I did not take it too well. Four just sounds so much older and officially makes her a little girl. I guess the sadness is because I want her to stay young forever in hopes of keeping more of the Rett symptoms from showing up or the existing ones from getting worse. I want her to still be 3 years old *when* the cure for Rett is found. I don't want it to be another year that has passed that the Rett monster has controlled her little body. Thankfully I think Reagan is happy most of the time and in the end that's what matters.
The birthday girl
Enjoying her happy birthday song
Time to blow out the candle!
using her switch to hear a happy birthday song
Opening presents and the end of her patience. :-)
Tuesday, February 14, 2012
Friday, February 10, 2012
Aqua therapy
Reagan had her first aqua therapy session yesterday with a physical therapist and will be going weekly in the future. I was really excited for her to start this type of therapy because she has always been such a water baby and she loved it!
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