Tuesday, April 6, 2010

MoyaMoya...

Malachi had his MRI/MRA last night. It is looking like he is being diagnoised with MoyaMoya disease. For those of you that don't know what it is go Here. When this first started happening a few days ago MoyaMoya was the first thing I though of. So the diagnosis doesnt come as a cpmplete shock to me. We are going to be talking to nuro-surgery today and hope to get some answers. We do know that this is a progressive disease and unless corrected with sergical intervention, Malachi will continue to have strokes. They believe this stroke has been progressvie and they can see where new pathways have been formed around the parts of his brain that had blood loss. The entire report from the MRI is still not in so we should have a better idea of what is going on. But brain surgery is definatly the only option we have. Ugh.

The goos news is that Malachi has started to use his right leg more and more. PT and OT were in evaluating his mobility yesterday. They were pleased. They had Malachi stand for a while and helped him move his arm around. The nurologist came in to take a peek at him and he told us he was optomistic. So are we. We will continue to challange Malachi and push him to do his best. We have never babyed him and we are sure as heck not going to start now.

I don't want to be going through all this and see my baby in so much pain, but I will continue to praise God for all that he has given us. Malachi is alive and I am so thankful for that!!!!

We are also haveing issues with his sodium levels, they are low. And this morning they told me he is not peeing like he should be, so they are worried about that. Our medical team now consists of Cardiology, Hematology, Nurology, Urology and now Nuro-Surgery...oh my!

Malachi did finally get to drink last night, they dont believe his ability to eat has been effected, so that is good. We are hoping to get him up and playing today.

They tried to get a picc line in last night with no luck, he didn't like the sedation. So they are taking him down today to put him alseep so they can get it in.

So here we sit, with a new diagnosis, in a brand new day. Its going to be a good one...I just know it!

6 comments:

Andrea said...

I'm glad that there's a diagnosis to put with the symptoms. Now you can face it head on! I can't imagine how hard things must be now, but know that you have a big group of people that are here! I do think that today will be a good day,too! Keep it up, Malachi!

Lacey said...

I'm glad he's doing so good! That indeed is a scary diagnosis but hopefully they can fix it easily with surgery. Go big boy!

Kristin said...

Praying for you on this new journey.

Tara said...

Well, we prayed Polly through surgeries for MoyaMoya (http://gillianmarchenko.co.nr/)...we'll be happy to pray Malachi through, as well!

Emily said...

I just LOVE your positive attitude! LOVE it! So glad you have a diagnosis. I know he will pull through this new path he is on!

whatever to us said...

In our thoughts and prayers- I 'know' a mom of a lil miss who's now in middle schoo who was diagnosed with Moya-Moya. If you want, I can get her in touch with you. Her daughter is just the sweetest and her mom rocks too! Hugs and know that you and your family are never far from our thoughts and prayers.