I have been trying to write this blog post since last year when Ella got her official diagnosis from the doctors at Kennedy Kreiger. She's had some minor delays from the very beginning, first with feeding, stomach and sleeping and then with speech and anxiety. We got help for her and diagnosis' of apraxia then hypotonia (low muscle tone) and probable dispraxia. We started realizing that our first sweetie wasn't born perfect. No big deal, we could work together and fix her. Mommy and BaBa did a lot of research and she began taking supplements. They worked like a charm and we thought we had dodged a bullet.
Her birthday is in August and she is small for her age (around the 16th percentile) plus her delays it was decided she would start school a year late and go to Daddy's school. Even though she had an IEP for speech her delays seemed few although she didn't progress as much as we all thought she could.
She then spent first grade in our neighborhood school and her physical delays and anxiety were becoming more apparent. It was decided she now also had Attention Deficit. None of us were comfortable with it but she was started on medication and referred to Kennedy Kreiger where they routinely check for genetic disorders and a red flag popped up immediately for a Mitochondrial disorder, in simple terms she can't process protein. Not curable but definitely treatable with vitamin supplements they customize just for her, nicknamed her Mito Cocktail. Suddenly it all made sense, low muscle tone, weak eye muscles, low energy, short attention span, slow growth. The geneticist could tell just by looking at her drooping face that it was Mitochondrial, Wow.
She was already on the right track with the supplements, they just had to be tweaked and she just takes the one cocktail three times a day AND her parents save $150 a month not having to buy them over the counter. Of course it's not a cure. She goes to therapy with Mommy to learn ways to deal with her attention and anxiety and the chiropractor with Daddy, she grew a full inch after her first visit.
She went back to her Daddy's school for second grade so he could be more involved. She also had an EKG to check for weakness in her heart which is pending,
Somewhere in the process it hit that we don't need to "fix" her. She is perfect the way God made her and we wouldn't want her any other way.
|OUR PERFECT GRANDDAUGHTER|
|OUR PERFECT GRANDSON|
Attention-deficit hyperactivity disorder (ADHD)
This week our big four year old was diagnosed with ADHD and referred to Kennedy Kreiger. Stay tuned for another story of a perfect grandchild.