We're on a different path (and that's okay)

There is nothing good about Rett Syndrome. It traps girls in their bodies. It robs basic abilities most of us don't even think about. It is associated with a long list of serious medical complications. It takes lives way too soon.

I can see why our situation would evoke feelings of pity in some. But pity feels very different than compassion.

I think there's a misconception that Mike and I are somehow missing out on "real happiness" as parents because Caroline is not a typical child. Yes, there are some heart wrenching and devastating moments--all related to battles we wish Caroline didn't have to fight. But she's still the same child who once inspired "Congratulations!" after her birth. 

We're on a different path and that's okay. Our challenges, expectations, and milestones may be different, but Caroline is still our pride and joy. 

Finding a blanket for our little kicking star

Caroline is not ambulatory...she doesn't crawl or walk yet. But she is constantly moving her body--rocking to scoot forward, kicking her legs up, attempting to do sit-ups, rubbing her hands together, shaking her head, etc. Caroline rarely sits still anymore.

Every night, she spends anywhere from 2-15 minutes purposefully kicking her legs up before falling asleep. She also does this when she wakes up in the middle of the night. Caroline outgrew all available sleep sacks (she's really tall!), but we recently found an awesome blanket shaped like a flying squirrel. It keeps her warm and stays on!

Caroline showing off her kicking skills

Starting the year on the right foot

All things considered, life has been good lately. 

A major positive change is that Caroline is sleeping again...consistently! Two months ago, I had posted about reaching our tipping point (we eventually found a solution). These days, Caroline sleeps through the night and wakes up happy, alert, and strong.  Getting rest has made a huge difference in our lives as well!  

Another great news is that we are now getting some respite hours of in-home nursing care under the Elderly and Disabled Consumer Directed Waiver. We also got approved for additional hours of nursing assistance to use at Caroline's preschool, as she requires constant care for both safety and basic everyday needs. Her nurse is incredibly patient and sweet. Caroline adores her! 

We love her current school, but Caroline will need to transition to a specialized education system in September. Caroline thrives in a learning and stimulating environment surrounded by children her age. We are relieved that there are options available to continue to meet those needs.

I count my blessing everyday. 

Doctor appointments

We had a very busy day today! Caroline had visits with the orthopedist and the dentist (in addition to her weekly therapies).  

The appointment with the orthopedist was a follow up to a concern we had about Caroline screaming in pain when placed in the kneeling position. The pain Caroline is experiencing is most likely due to her issues with tightness and very limited internal rotation. The doctor suggested she get fitted for Ankle Foot Orthosis (AFOs) to prevent further tightening of her achilles. Last summer, Caroline was fitted for AFOs, but they were the wrong kind and size. 

For the first time during a doctor's visit, Caroline was given a little mini gown to wear.  She's a little lady now!  

I also took Caroline to her first dentist appointment. The dentist was recommended by another kind and helpful Rett mom in my area. I have to admit I was anxious about the visit because I didn't know how Caroline would react. I was also concerned about her strong gag reflex. Teeth brushing (even just the front teeth) often results in throwing up. But Caroline did really well! She was very cooperative during the teeth cleaning, fluoride treatment, and the flossing. For a moment, she seemed concerned about what was going on, but she didn't complain at all!  I was happy to hear that her teeth are in great shape. And as usual, she charmed everyone :-)

Tired Caroline after a long day

Making the case for Early Intervention Services

This morning, I spoke to the Virginia General Assembly Finance Committee members at a public hearing on the Governor's proposed Budget.  I shared Caroline's story to help make the case for Early Intervention Services.  Our family knows first hand the impact these services can have on the development and quality of life of a child with with developmental delays or permanent disabilities. 

I had the pleasure of meeting the folks at the Infant and Toddler Connection. They are kind and truly committed to the needs of the community.  

I took this picture while waiting my turn to speak

My speech 

Good morning. My name is Marta and for the past year my 2-year-old daughter Caroline has received Early Intervention services from the [removed] Community Services Board.

At 10 months, Caroline had low muscle tone and unlike most babies her age, she was not making attempts to crawl or even roll around. Her pediatrician expressed concern and suggested we contact Early Intervention services. The evaluation determined that Caroline had significant delays in all areas of development. Within a month, Early Intervention assigned an education specialist and a physical therapist to work with our daughter. A few months later, Caroline was diagnosed with a debilitating neurological disorder called Rett Syndrome. The disorder robs girls like Caroline of their ability to use their hands, talk, or walk because their brains cannot properly communicate to their bodies. However, as we are learning with most debilitating disorders, we can significantly expand a child’s horizons through targeted therapies and individualized education.

We have appreciated all that you in the General Assembly have done in the past to support community services for infants and toddlers birth through 3 and for maintaining the Medicaid rates that help support these vital services.

More children than ever need these services. Statewide, the number of infants and toddlers who received Early Intervention Services in fiscal year 2011 was 15 percent higher than in the previous year. Here in [removed] during that same time period, the number of children served increased 27 percent, from 789 children per month in 2010 to over 1,000 children per month in 2011. Early intervention services must have sustainable funding with case management rates that support the intensive coordination needs of these infants and their families.

These services are vital for families with a child who has a developmental delay or permanent disabilities. In our family, Caroline is making slow but steady progress every day, in spite of the devastating effects of Rett Syndrome. Her muscles are stronger and she is beginning to take steps with assistance. Caroline is unable vocalize more than 2 or 3 words, but her understanding of language is on target for her age. In spite of the challenges Caroline faces, she is a happy, social, and engaged child. We are deeply grateful for the incredible impact these services have had on Caroline’s development and quality of life. Please do all you can to ensure sustainable funding to continue these services for all Virginia families who need them. Thank you for your time.

Doing sit-ups!

For nearly a year, this is the way we've been teaching Caroline how to bring herself up to a seated position.  She has never attempted to do this without assistance, most likely due to the motor planning involved.  This video was taken on April 2011 when Caroline was about 15 months.

But in the last couple of months, Caroline has decided she's going to come up by doing a sit-up!  Her physical therapist and I taught her to use her elbows to push up.  She can bring herself up (on her own) this way when she's on the couch. She's pretty determined to do the same on the floor...it's just a matter of time.

And here's a video of Caroline holding onto her legs. Watching her do this still amazes us. Seeing a girl with Rett purposely using her hands, even for just a few seconds, is something worth celebrating!