We broke the weight mark!

It's been exactly one year since Reagan had surgery to get her feeding tube placed. Before the feeding tube, she was stuck between 24-26 pounds, we could never get over that hump. She had the surgery and immediately started gaining, her color changed and she looked so healthy. I recently looked back at pictures of her before the surgery and couldn't believe how thin she looked. I must have been in denial about her size as the idea of a feeding tube made me cringe.

Since the surgery, her weight has hovered consistently around 34 pounds. She had a lot of stomach problems for months with gas issues and I would have to back off of her feeds so she would lose weight, and then gain, but never break the 34 pound seal.

So I was completely in shocked and did a happy dance (much to the nurse's dismay) when she told me Reagan's weight is now a whopping 37 pounds and she is 43 inches tall at 4 1/2 years old! I knew that she felt heavier and she looks healthy, but I had given up on weighing her because it seemed to never change. That puts her BMI just under 15, which is very healthy. She is above average on both the typical and Rett Syndrome growth charts and I am hoping for no more illnesses that make her weight decrease. It's comforting to know as we go into Fall and flu season that she is healthier than ever!

Here is her sweet smiles before the nurse came back to give her 2 shots. :-(

Changes

Reagan starts her last year of preschool in just one week and although she will be attending the same school, she will have a new team. Only one of the assistants staying in her class from last year. I am excited about the change but with hesitation because of the unknown. I know she will win them all over with her beautiful smile and continue to disprove the stereotype that individuals with RS have a limited mental capacity.

Next week is also brings a big change for me. After being a stay at home Mom for 2 1/2 years (after Reagan's diagnosis and Lauren's birth), I am re-entering the workforce in a full-time position. I have been working part-time from home for several months so this is complete change of pace. I am so very excited about this opportunity and ready to once again have a focus on my career.

I don't worry about how this change will affect Lauren as she is already in preschool and enjoys her school, teacher, and friends. However, my biggest concern is Reagan and how I can work full-time and have her well taken care of also. She will need someone to care for her after school and all day on Fridays. Today was a total meltdown for me as I struggled with finding someone that can fill this role that will allow me to work. I had a complete "I hate RS" moment (or ten) over the frustration that RS brings to all of our lives. There are no centers in our area that are set up to be specialized in special needs care. So the only option is to find someone that can keep her at our house. The downside to that option is the cost will be higher, relying on one person to always be responsible and reliable, and then of course, finding that one person. I feel fortunate that we can cover the costs of having someone watch Reagan at our house, but I am anxious to have to rely on one person to care for her at all times.

I know that person is out there and that this will all work out. I know in the grand scheme of things that this is not a bad problem to have. But today I felt hopeless and frustrated, and we all have those days.

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!

I love this picture!

Superhero cousins

PJ party

Pool time!

So exciting!

Tante Erin and cousins Evie & Ellie

Loving on Grandpa

No doubt about it, this girl loves her PawPaw!

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 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.

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.

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. :-)