Happy Birthday Claire!

Happy 2nd birthday to Claire!  Her birthday fell on Easter Sunday this year, and it was a beautiful day.  Her face lit up when we told her she was such a big girl.  In fact, she danced proudly every time she heard the Happy Birthday song.

Birthday Girl

We’ve been busy this past month finishing up the creation of what we refer to as Claire’s medical baseline.  In the beginning of April, Claire went through a clinic at the Pediatric Center for Airway, Voice and Swallowing.  Claire was seen by experts specializing in Pediatric Otolaryngology (ENT), Pediatric Pulmonary, Pediatric Gastroenterology, Pediatric Speech Pathology & Swallowing, Nutrition, and Pediatric Rehabilitation & Therapy.  The wait list to get into this clinic was long, but well worth it.  The physicians and experts cycled through our room and after our visit, all met to discuss Claire’s condition and associated recommendations. It was determined that Claire definitely needed tubes in her ears, and while under anesthesia, she should have an upper endoscopy completed to rule out damage to her esophagus from possible acid reflux.  During surgery, Claire should also have her tonsils and adenoids checked, along with a procedure to check her hearing.  Claire underwent surgery last week, and everything went well.

Claire Surgery 1Claire Surgery 2

During the past month, Claire also visited the Feeding Clinic at the Cleveland Clinic Children’s Hospital.  Claire’s feeding evaluation team consisted of a Developmental Pediatrician, a Clinic Psychologist Program Director, a Clinical Dietician, and an Occupational Therapist.   The team monitored Claire’s feeding behaviors as she ate and drank under their careful observation.  Claire also underwent her 2nd swallow study.  Recommendations coming out of the Feeding Clinic and swallow study include pureeing Claire’s food as she gags on other textures.  Claire’s ability to drink will also require more attention.  She will continue her steady diet of 50/50 Pediasure and milk, but we will look to transition her off of the bottle.  This transition is easier said than done.  Over the past year and half, I think we’ve tried every “sippy cup” on the market with no luck.  Claire has difficulty forming her mouth the right way around the nozzle or straw.  Currently, for water and juice, we use a medicine dropper to get her the additional liquids she needs.  Her team had some great suggestions though, which we will incorporate.  We will also begin to thicken all liquids with a special Rx gel; we’ve only tried it a couple of times, but it seems to help thus far.

Parallel Bars

Therapy 2

Claire is still attending the Mobility Clinic as well as her typical 8 therapies a week.

Yes, with the completion of these clinics, along with the prior visits she had with 35 specialists in the past year,   I am happy to say Claire’s medical baseline is now F.I.N.I.S.H.E.D.  We finally understand where Claire is today, literally from head to toe. This baseline will help us know as she grows, where we need to focus if she regresses, or where to celebrate, if you will, in the areas where she has progressed.

After Claire’s diagnosis last summer, Sean and I started going to a Rett Support group.  I remember blankly staring at other Rett moms when they told me during one of the first sessions that we’d eventually get used to our new normal of doctors’ appointments, etc. They told me that things would gradually get easier as Claire’s care plan would eventually come together.  I remember at that time being so overwhelmed and feeling like this would never be possible.

I can’t believe it but a year later, here we are.  We have arrived at our new normal.  Claire’s baseline is finished, and her care plan is in place.  We have a medical team, we know where we need to focus our efforts, and we know our next steps.  We know what questions to ask. We feel comfortable finally, and for this, we are thankful.

– Colleen

Big Smile

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