The first comment Shawn had at our first break was, "well...it looks like there might actually be some hope".
The seizures are not the problem, they are a symptom to alert us there is something neurological that needs to be addressed
I CanNOT fix my child. I can provide neuro-developmental opportunities!
We KNOW Maggie. As her parents, we are qualified to help her...more so than the professionals, but professionals can come alongside us. We should be the ones in the driver seat, no one else!
We need to become Engineers
Chemical engineers-to assess her nutrition and how it affects the brain
Electrical engineers-help with her wiring
Civil engineers-deal with being able to track her and know where we are going
Mechanical engineers-figure out how to get her moving
(Good thing both my mom and dad are engineers! That's my kind of problem solving)
There is no limit on her neurological wellness.
We should evaluate the abilities, not the disabilities.
We assessed her with a comprehensive integrative and developmental progression chart. We identified her injury to be severe extensive brain stem/Limbic/cortex. Her neurological age is 2.8 months, which shows she is operating at 21.5% for neurological functioning. None of this surprises us, as we've known all the thing. It was actually nice to have a tangible assessment that helped us identify where she is and where she needs to be going. Plenty of room for improvement. This also reassures me that the wait and see method is absolutely ridiculous. If she is already neurologically behind and her chronological age keeps increasing, the spread is going to become greater and greater.
And one thing that was driven home multiple times...TUMMY TIME! Kids don't spend nearly enough time on the floor on their bellies. There are so many benefits to kids spending time on their bellies. I'm hoping we will go into detail more, but it was mentioned many times today. I have "more time on tummy" written at least 3 or 4 times in my notes!
More to come tomorrow!
P.S. Maggie loved snuggling with the girls and did great today!
She is just so beautiful. That peaceful face at the end of a long day.
ReplyDeleteThe power of the positive. We loved the blog.
ReplyDeleteThere is an older lady in our church who asks about Maggie every time we see one another. Her response each time is: "She is going to be fine! I know it!"
We agree! : ) : )
I wish you well.
ReplyDeleteMy granddaughter, too, has a serious seizure disorder. It's been diagnosed as CDKL5, which is the gene that causes it. Have you had Maggie tested for this particular disorder? It can be determined by a blood test. There is no cure; however, there is a lot of research being done and a great parental support group . Please visit their website - just google CDKL5.
My best to you.