Is it CP? A tumor? What?!

I sent out a mass email with these details to- just wanted to post here as well.

Ok, I don't even know where to begin with this one. I guess I'll give you all a run down of the first appt.

Our appt at the CP center was Thursday morning at 1015. We arrived at 10, got called back around 1030. The nurse weighed Logen and checked his height. He's 34.7lbs and a little over 37 inches tall. We sat in the room until about 11, when the PT walked in. She checked his tone, measured his limbs, etc. She asked us about a spot on the back of his leg. This spot is a bit raised and looks a little yellow. We've asked EVERY specialist we have seen at Arkansas children's hosp- all of the dr's have told us it was a birth mark and have never investigated it any further. The PT seemed a bit concerned about it, but went on with her business. She left the room around 1140ish. It was about 1245 before we saw the neuro. This lady was AMAZING to say the least. SHe herself had CP, as well as one of the RN's in the room with us. Logen walked up and down the hall for a video camera with & without braces. Then, we go in the room to "talk". She checked the stuff the PT did, asked several questions about therapy, etc. This is where is got tricky.

She also looked at the so-called birth mark. She said, no way-- that is definietly not a birth mark. She said, let me go get Dr Gutman (who is also a neuro, but deals more with neurofibroma's; or fibroneuroma's (??)) ANyway, he said nope- thats something more. She said she was going to order an MRI to have it looked at b/c it could be one of the fibro things mentioned above. We started asking what-if kinda questions- she wouldn't answer them b/c she said there were a ton of possibilities and she needed to see the MRI to know what we were dealing with. So, now we are ticked off at Arkansas Children's (have been for a while, but this was the last straw! I will NEVER EVER EVER take Logen back there)

She asked where the damage was on his brain. We told her we were told, left temporal lobe. She said, couldn't be- Doesn't add up. Logen has more difficultly with the left side, which indicated right brain injury. She also noted the drooling. And, the aspirating. She said she has seen over 2,000 children and has not seen a child as "mild" as Logen has such eating/swallowing problems. She said that MRI has to be wrong- she said we had to get another head MRI. Then, she said she really didn't know if he had CP or not. Said the mark could be causing something neurological to be going on. The damage on the left side of the brain could explain the speech issues, but not why the left side is more affected. I've wondered this before- how the MRI showed damage on the left, yet the left is more affected. Doesn't add up. The MRI is also going to include the fossa ova (?) b/c there could be something going on in the lower part of the brain. Oh, she did say- it wasn't autism--- woohooo... HA

She sent us to have his vision checked at Missouri Baptist hosp Friday. She was worried about tumors behind the eyes. THANK GOD his vision is perfect-- no tumors!

We are waiting to hear about an appt with an audiologist. She wants Logen to have a hearing eval and an ABR. Which, he will have to be sedated for.

She also ordered a hip xray, which we did Friday- I will call Monday to get the results. She didn't think his hips are subluxed, but wanted the xray to make sure.

His MRI's are scheduled for July 18th. The appt with Dr Gutman (the fibroma dude) is July 19th. In the mean time, I get to freak out about what's going on with Logen- does he have CP?? Is is something better or worse? Life threatening or not? I have so many emotions, I don't even know where to begin. A part of me wonders if it's some sort of tumor, and if we remove it- will everything suddenly get better? Or, what if it's something horrid and he has a life expectancy of 10 years (or less?)

Logen needs your prayers in a big way as we go through this "not knowing" journey again. We did this in 04-05 until we figured out it was CP. Now, we do it again. I never ever thought I'd pray for just CP. NEVER. Who prays their baby just has CP? What if we had never gone to St Louis?? We waited 18 months to get into to see Dr Brunstrom (who is amazing... so very attentive- she caught stuff NO other specialist has).

I will also post this on the blog, as well as future updates about Logen- I may forget to email with all thats going on, so check their if you'd like.

I'm sorry this is rather choppy. I've been frazzled since we left her office Thursday. I guess I'll continue to be this way until we get the results in July.