What are we doing and why are we here?
I never thought that I would write about this. I’m not sure why because it is nothing to be ashamed of. Nothing to be embarrassed of. It happens.
Both of our children are tall! Of course, Charlie is just over 6 feet tall. Not really tall. Last spring when I realized that DD11 (then 10) seemed to be quickly gaining height, closing the gap on my 5 foot 6 inch frame, I was a little concerned. Not just because of the height but because of the entire picture. She is tall, skinny, very awkward, and weak muscled. During her well checkup, I asked her doctor about the possibility of a pituitary problem. The doctor quickly said, “No.” Then, the doctor brought out her measuring tape and measured DD11’s arm span versus vertical height. The doctor said that she thought DD11 might have Marfan Syndrome. Thus began the rotation of medical appointments. DD11 saw a cardiologist, an ophthalmologist, and a geneticist. She has had multiple blood draws, but there is still no answer. The geneticist doesn’t think that it is Marfan, but she is unable to come up with an answer to our problems.
In September, DD11 started Physical Therapy (PT) to try to strengthen her core muscles in an attempt to protect some of her joints. During her PT, her therapist noticed that she would probably benefit from some Occupational Therapy (OT) to help strengthen her hand muscles. Before DD11 started OT, we took a much needed vacation to Disneyland. Disneyland has always been our “Happy Spot” because our first time there as a family was for a respite trip while caring for a grandparent on hospice. Disneyland is our utopia! While we were there this time, we noticed that DS7’s sensory problems in dealing with loud noises and crowds were increasing, so during DD11’s first OT appointment, we asked the therapist about getting some help with DS7. During DS7’s OT screening, the therapist noticed that he has some of the same muscular issues as DD11, and she recommended that DD7 have PT and OT just like his sister.
So, starting this Monday (Jan 3), both children are in PT and OT. Both therapists are suspecting the kids’ problem may be a neuromuscular issue, so DD11 has an appointment with a neurologist later this month. Currently, DD11 is between one and one and a half inches taller than me. DS7 is up to my chin.
We are hoping and praying for some answers this year that may help both kids for their future. God is our Rock in this journey, and Disney keeps us sane. We invite you to stick with us in our adventures as we continue homeschooling, look for medical answers, and travel.