Running For Research - PWSEarly interventions such as OT, PT and growth hormone can improve the outcome of PWS. Data reported from the global registry indicates that babies with PWS are hitting their motor milestones earlier than previously documented. This is likely a reflection of earlier diagnosis and more infants receiving growth hormone therapy.
There has not been a time in Clementine’s life that didn’t involve a nightly Growth Hormone ( GH ) shot or multiple therapy visits per week. As I mentioned in a previous post, she began taking GH at 10 weeks of age. Except for the occasional dose skip, always due to parental forgetfulness, she has received her shot every day for 11 years. And from ages 18 months to 3 years, she also received multiple insulin injections daily. Clem was a human pincushion during those years! Luckily, we were able to switch to an insulin pump when she was 3 and the insulin injections were no longer necessary.
After Clem’s diagnosis, as the dust settled around us, Stephan and I decided that we must jump into any and all possible interventions/therapies available to give Clem the best start in life she could have. We took her to Children’s Healthcare of Atlanta ( CHOA) and had her evaluated for Speech Therapy, which for infants is mostly centered around feeding therapy, Occupational Therapy and Physical Therapy. Clem was found to be in need of all of these services and so the process began. After a few months of therapy at CHOA, a policy change came about and services were no longer covered by our insurance. This was the first of MANY issues surrounding therapy and insurance benefits.
Being released from CHOA turned out to be a blessing in disguise. It was then that I found a private therapy clinic that offered all 3 disciplines. Clementine was able to be scheduled for all of the services she required and we were set! Today, 11 years later, we are still receiving services at the same clinic and are very grateful for what they have done and continue to do to help Clem develop. The staff at the clinic have become like family and their true love and concern for Clem is evident in the level of care she is afforded.
Since the age of 2 months, Clementine has had a minimum of 3 therapy visits per week. At present, she has 4 therapy visits per week. This is in addition to 2 tutoring sessions per week. Her schedule goes something like this: school until 2:30 then straight to the therapy clinic, then home for a tutoring session, then homework and then an exercise routine, dinner and last a 30 minute walk or training run. It’s exhausting for her and provides little down time.
Because of interventions, Clem hit all of her developmental milestones just slightly behind what is considered normal. The progression of most of the milestones was sequentially typical, although a bit more hard won. She is as mobile as other kids her age, but maybe a bit more awkward in movement. Clem can run, swim, climb and play just as others do. Clem has continuing improvement in her fine motor skills and has the ability to perform most self care duties on her own ( things like showering, dressing etc) as well as anyone else. Her largest issue in this area is handwriting but it is a work in progress.Clem’s speech is close to normal. She does have some articulation issues but they are lessening with age and with the help of a great speech therapist. Her ability to express herself verbally has always been an area of personal strength. Clem is funny and she will tell you precisely what you are doing wrong ( especially if you are her dad) !
All of these victories have been won because of very early and continuous intervention. Believe me when I tell you how tiring it gets to go to daily therapy visits, especially when you have been doing it non stop since you were born! But this is where Clem’s immense strength and perseverance become apparent. She seldom complains and always does her best. Clem truly has the heart of a champion and she shows it every day and in so many different ways!
Stephan and I are so very proud of all she has accomplished and all of the success that is yet to be revealed ! Clementine is a wonder and has motivated many others by her actions. I’m so proud to be her mom and I couldn’t possibly love her more.
