B's night in Wolfson

Travis and I checked in with B at 1:00 Wednesday at Wolfson for a 24 Hour EEG..We waited for a while in the lobby before they called and were ready for us upstairs..We made our way up to Bluebird lane on the 5th floor finally and tried to get settled for the night..The tech come in to get things ready to to start putting the what seems like hundreds of wires on B's head..We wrapped her in a sheet so she couldn't pull off what had to go on..We brought her baby praise dvds..She loves these movies..We put one in first thing when we got there..We thought it might help calm her..and it did..So after about 30 minutes everything was set and now we were to wait and if she had anything that could be a seizure we were to push a button..( and nothing happened)The DR said even though nothing that we saw happened he would still get alot in info off the test..she handled this like a champ ..so calm..she played with the toys we brought and watched the movies..It was a long night ..she was restless in a strange place and had to stay on the bed so the camera could see her all the time also..

We had awesome care..Wolfson is a great place for sick kids..We are so thankful they are so close to home..

The next morning early we were watching the helicopter land and Her neurologist came in..He told us the first two blood results he had ordered a couple of weeks ago were back and NORMAL..so what does that mean I ask that she doesn't have leukodystr0phy? He said no, we still have to watch for that...there are so many different kinds of this dieses..He said to call Tuesday and we would talk about the EEG and what if anything to do next..

With leukodystrophy kids regress ..so we watch for anything like that..I don't think it could get any more nerve racking then to watch B and think well yesterday she was doing this and today she can't and not panic..But we are doing our best to just be Normal..

All smiles

The day we went to do B's blood work!

Neurologist visit

I heard a new song in the radio this week..I don't know the name or most of the words but I remember a line..

Nothing that happens to me takes you by surprise..

I remind my self of this when it seems I can't see through my tears!

We went to see the neurologist to talk about B's MRI and EEG results..I was so dreading this appointment..It is so hard to write this down, as if it may not be true until you put it in writing..

Anyway we talked about the MRI and he showed us slides of her test..I had gotten a copy of the report from our pediatrician a couple days before so I was prepared there would be something to talk about..He was concerned about one part of the brain ..He thinks she may leukodystrophy.. This is where your brain stops making insulators for the nerves or never makes them..It is so complicated..I really don't understand any of it..He says it is possible that the brain appears this way because she is developing slow and so is this part of her brain..of course this is want we are praying for..If she has leukodystrophy it has over a dozen different types..So the Dr ordered 3 different blood tests..2 that would be back in 5-7 days and one that may take 3-5 weeks..So we are desperately awaiting the results..I am not good at waiting..The DR also ordered a 24 hour EEG to once again rule out seizures..I take B Wednesday for that test to spend the night in the hospital..Please pray for our B..

who's racing?

"Childhood should be a journey, Not a race!" --unknown

I love this quote..and this is so true..what better thing to write about in my 100th post..I am so glad I have taken time to jot down things here and there..I like to reflect back on some time ago..

Bristol had an awesome therapy session last Tuesday..she put things into a container for one..she stacked blocks for another..she pushed something across the floor and took steps behind it for one..and she ate blueberries all by herself for another..She was a busy girl that day with 4 appointments..

She enjoys her time at the clinic with her therapist but we are making a couple of changes..she has been going for a year now..Has rarely missed any appointments and sometimes we were there 3 times in a week..not any more..

We have slowed down to 2 times a week..

I want her to have time to just be a baby at home..

I still want her to progress,

but therapy is not going to change who she is..

I do not want to change who she is..

I do want her to be the best that she can be..

I will cheer her on in her own journey,

And I might add she is doing amazing things!

We love you B!

MRI #2

So we took B for her MRI..Things went very well..very routine..We got her dressed in a gown and went down stairs..I went back with her where they would do the test..She was all smiles..it is a blessing she is not aware sometimes of things that are going on..the anesthesiologist who Travis and I had meet with a few minutes before put on gas on her as I held her and her little body just went limp in a few short seconds..Yikes that wasn't easy..but I was comforted she wouldn't wake up and be scared while the test was being done..when I went to the waiting area they put her IV in and started the medicine that would keep her asleep..things went wonderful..in just a little while they called Travis and I to come back with her and with her while she was waking up..She did Wonderful..And now we wait!