I should rename this blog Therapy for Mommy, Grace is perfect and resilient!

Let's see how do I begin. Well, first off, a BIG SHOUT out to my hubby, Chris and woot.com for the free headset, (only $5 s/h). It was definitely needed today for all the return medical calls. The neurologist called me back two minutes after I picked up the girls, so I quickly pulled into the funeral home on Sawnee Dr. and had to get out of the car, too noisy you know! Any way the doc is one of those that really undercuts a dx (diagnosis). For example he would probably say your child is slender not skinny, get the picture?!

So here is what I have so far. Brain scarring (aka, damage, although minor), deep white matter damage, gliosis, so a mild remote injury, or as he stated, 'a lttle injury'. So upon the few questions that I could get to, I pulled out of him, my ? so this in definitely NOT ITW (idiopathic toe-walker), and so this is mild CP (cerebal palsy) and he said and I quote, "yes, you can say that, mild spastic diparesis" or CP. Yes many questions still to come. But on a cell phone in the rain in a funeral home parking lot was not the right time or place. We know enough now to move forward. We will get more questions answered in the next week. Don't worry I will be asking.

We are going to proceed with the protocol that he suggested. Botox injection, 11-18-09 and then about three rounds of hard casting, weekly to increase the flexion in her right leg. Then AFO's (ankle-foot orthodic). Her leg is already in contracture. So we need to get on this STAT to hopefully avoid surgery. Dr. Berensen is not sure on the expectations to give me regarding this, at least he is honest! But I know my God, He can do anything and my sweet baby Grace, and how strong and courageous that she is.

The is new and VERY CHALLENGING territory for me, I must be honest. I have always been the EMT rushing to the emergency, calm cool and collected. I have not done well with long-term care. So yes, I am frightened that I cannot live up to the needs of us all. Okay, that is enough of that.

Here are the high points in my opinion, the white matter can be worked with

"The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."http://en.wikipedia.org/wiki/White_matter

So, once again, I am so thankful that Our God gave us the discernment to begin the therapy at A Healing Place, because we have already begun some of that repair and will have more knowledge to tackle the rest, now.

Please spread the word about Factor V Leiden Mutation and phospholipid anti-body syndrome. Think of what can be prevented by spreading the word.

So I must close now. If you are reading this, I do not have anymore to answer or give. I just pray that we continue to hear and honor Our God through all tx (treatments) for Grace, this is surely not a sprint, or a marathon but a lifetime. Please pray that we can train for this and have the perfect words to say to her for all of the moments to come. Oh, and also, very selfishly, please pray that my upcoming test (chest x-ray, CT of the head, and barium swallow) will all come back with out the CA. There is no time for that. Mommy needs to be stronger than ever before! Thanks for listening! Good night!