Tag Archives: baseline evaluation

It Never Occurred to Me

Romans 8:26 – www.biblegateway.com

“26 In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words.”

It never occurred to me to ask God for a physical therapist to add to Andres’ Chiari team.  I had been wondering how in the world to find out if any of his learning or behavioral idiosynchracies were linked to his Chiari.  Since he has been homeschooled from birth, there is no one else who has assessed him and can give me any input about potential weaknesses or deficits.  I am often left wondering if his behavioral and learning differences are just normal boy (he’s our first boy) behavior or if they are a learning disability or effect from the Chiari. 

I have suspected I am missing something in the Chiari picture and wondering who in the world could fill in the blanks for me.

The director of the therapy center I take Noah to asks about my children, and I had shared with her Andres’ Chiari 1 malformation and syrinx diagnosis.  I also mentioned to her that I was concerned that he might have some deficits that we were overlooking, but I wasn’t sure how to positively identify and address them.  She offered to have him go through full PT, OT and speech therapy evaluations, but I had a nagging feeling that Andres needed something more specific.

So the next time I saw this wonderful woman, she told me that she had mentioned to the new physical therapist Andres’ condition.  Turns out the new PT did a rotation at a children’s neurology clinic and had a group of children there who had Chiari malformations.  Some were pre-op, some were post-op.  So she is intimately familiar with Chiari and the effects it has on the rest of the body. 

And if that wasn’t enough, she followed up that rotation with a rotation at a rehab where she worked with two young adults who had Chiari malformations. 

Meeting with her was such a blessing.  Together we marveled that God had been weaving this meeting together and that He had placed her at the children’s hospital with that specific group of children and at the rehab with those particular Chiari patients and then at the very therapy center that we are involved in, and into that specific meeting with a mom who very much needed to hear what she could tell me.  She said in all her schooling she probably read a paragraph in a textbook about Chiari, nothing more.  After working with the patients she mentioned, when it came time for her to present, she chose Chiari malformations as her topic.  So on top of her weekly sessions with Chiari patients, she also had done extensive research on the subject.  Such a random topic, such a random meeting, except for the knowledge of God’s soverignty.

I loved the fact that in talking with me, this young physical therapist said that when the director of the therapy center mentioned Andres’ story, this therapist knew she HAD to meet with me.  Talk about being fired up and passionate about her job!!!  Her strong, strong, strong recommendations to me are to have the neurosurgeon refer Andres to a neuropsychiatrist who can test all of the areas that may be effected by his brain condition.   If he has surgery, it will be important to also do a postop evaluation.  If he doesn’t have the surgery, then it will be this baseline evaluation that we can turn to if Andres suddenly has changes in his presentation (balance, coordination, short-term memory, mood swings, executive function, etc.).  If there are drastic changes, it will paint a much clearer picture of whether or not the Chiari is causing the trouble if we can compare findings.  This will also allow me to address his specific deficits, if he has any, through the work I do with him at home during homeschool and also get him the appropriate therapy he may need.  I suspect he will wind up with OT and possibly speech therapy for language issues. 

For now, our insurance changes a bit in July, so I’m going to wait until then to set up an evaluation with the physical therapist.  But he’s definitely going to have one.  How cool that he can be evaluated by a lady who has worked with Chiari kids and will be familiar, not by textbook scenarios, but by hands-on-experience with the effects that Chiari malformations  can have.

I didn’t know to pray for a physical therapist.  Thank the Lord He does not only answer the prayers I lift up to Him, but He also answers the prayers of my heart in the ways He knows are best.