Tuesday, August 14, 2012

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. :-(

Monday, August 13, 2012


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.