Heading to St Louis

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.

Parker said "DADA"

Friday, June 15th Parker started saying "Da-Da"! Lil stinker was suppose to say "Ma-Ma" first! He also started imitating facial expressions Monay, June 11th. If ya stick out your tongue, he'll stick out his! If you make "motor boat" sounds, so will he. He's very good at it too, he laughs at his Nana b/c she's not the best "motor-boater" And--- Logen is REALLY trying to make the sounds Parker is making! A baby brother is just what Logen needed....

Quick Update

We are heading to St Louis tomorrow. Logen has an appt at the St Louis Children's Hosp Cerebral Palsy Center (say that 10x fast) on Thursday. Packing is going, um- well, it sucks! I'm hoping to find out great news- or alteast that we are doing all we can to improve Logen's *life*. Please say a quick prayer for a safe trip!

This Is Illegal In My House!

At 445am, I hear loud sounds coming from the baby monitor in Logen's room. My first reaction was to hit Adam and tell him somebody was breaking in. He turned over and said, what the heck is that? A few seconds later we hear, "Green Acres" playing in the hall way. Then, we see lights flashing. Then, we see Logen driving his tractor into our bedroom to PLAY! At 445 AM!!!!!! How can anybody want to play at that time of morning?? He went to bed at 930, so I know he was not fully rested. He did end up going back to bed, but it wasn't til almost 6 before he was back n la-la land! What a monster!! (I gotta admit, it was funny! And, I'm glad he's "able" to do stuff like this)

Vital Stim (6/6/07)

YesterdayVS session was very productive!! Logen actually ate! He ate nearly an entire Otis Spunkmeyer Blueberry Muffin and 4oz of applesauce! Lori was able to get the machine up to 14 (the highest setting is like 23ish)!!! His norm is 9.5~ he starts getting mad if she goes any higher. I guess he was so wrapped up in eating his yummy treat (I don't offer him "junk" often, and My Momma was the one that bought the muffin) that he didn't notice Lori cranking the machine up. He ate for nearly 30 minutes. He even let Lori feed him a few bites. He's not crazy about letting anybody but Me, Nana, Dad, Tabi (OT), and maybe a few others here and there. So, that alone was a big step :)
After the melt down during VS Monday, yesterday was awesome! I guess I will go buy him another muffin for tomorrow and pray he eats it! (VS is much more productive if you can get the patient to eat and/or drink during the session)

Why Can't I Hold The Water??

Last night, Parker was so funny! I stuck him in the shower with me and he loved it!! (He's been taking a shower with me or Adam for the last few months) But, last night he was so interested in everything. He was trying so hard to grab the water! He'd hold his hands out and move them up and down under the water trying to get some to stay in his hands. He kept looking back at me, like "Help Me Momma!!!" Precious moments!!!!

Does Anybody Know Anything????

This is a continuation of "DHS Bites". The lady finally called me back this morning. And, to nobody's suprise-- she didn't know anything! She had 2 800 numbers to give me about the transportation and lodging. The transportation one worked, but I got to leave a voice mail (do people really work in medicaid offices?). However, the other number didn't work. Go figure. I asked he about HIPP and a few other things our OT suggested- which she couldn't answer. She said, "call the number on the back of the medicaid card" OMG!!!! Do they hire people off the street to work in the DHS offices????? I could have figured that one out! She didn't even know which number went to what office. She just said, "call & see what one is what". Oh, boy! What a smart lady I dealt with! Now, I am waiting for her to call me back about the number that didn't work. If it takes 4 days, it will be pointless. Guess I'll be calling the number on the back of the card this afternoon. Maybe somebody there will know what the heck they are doing. Or, atleast know who I can call. And, not just the back of the card. Oh--- and (big shocker) the woman said, nobody had ever asked her the questions about lodging and transportation. Hmmm.... probably b/c nobody knows about it. Seems Arkansas is pretty good at "hiding" help!!!!!!!!!!!!!!!!!!!!!!!!!

Outside Play

Last night we took the boys out to play! It was so beautiful!!!

Shoppin' With Daddy

Adam is going to be building a storage builing in the back yard. Our garage is getting full of toys (for the big & small)! And, the lawn mower, deep freeze, "beer" fridge, etc. So, Sunday we went to Lowe's to "steal" their measurements & take some pictures of it. I'll definetely be posting pics as it gets built. It could be interesting!!