Lost

So I have been calling about Bristol's lab results re guarding leukodystrophy  for 3 weeks now and finally got a nurse that was honest..She told me she was going to do some investigating but it appeared to be lost..I said you have to be kidding..We have been waiting 5 plus weeks for results that were to take 3-5 weeks...She told me she would call me back the next day and we would talk about what to do!!
So the next day she called and told me to bring Bristol back in the redraw the blood..She could not locate it in any lab they use...She was suppose to leave the orders at the front desk of the neurologist office and attack something to them to assure this would not happen again..She said the labs have to make several stops and must have got lost in the shuffle..
I took Bristol the next morning stopping at the Dr's office first to pick up the  orders that were not ready..I was fuming..After talking to the front desk person she went to the back and came back with some orders that said ROUTINE..ugh NO.. I want this rushed..
So we went to the lab over at Wolfson..We always have much better luck there instead of the lab in Nemours..It was so crowded..I had never seen that many people in the main waiting area..We got to the lab and I thought I would ask just for the heck of it if she knew what happened to the original  test.The lab person said give her a few minutes and she would look into it because "things just didn't get LOST there"...So after waiting a while she come and got us and took us back and said the blood was never sent to any lab because it was not enough and they needed  little more..I said NO..I don't think so..I want a Brand New test..I tried to explain how important the test was through my tears and in a nice way..I was fuming by now..So after everyone pointing the finger at everyone else..We wait again..The result should be rushed this time and we should have some results in about 10 days..

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!

MRI tomorrow

Tomorrow Bristol goes for a MRI..I am so thankful she doesn't understand yet, and is not worried..We are to be there at 9am and she can not have anything to eat or drink after min night..should be a fun morning..:-(..they are going to give her gas and then start an iv and use the meds in that to keep her asleep..and to administer dye so they can get a picture with contrast..so we may have some answers or we may not..I am taking some info about Joubert Syndrome to make sure the pictures are taken to rule this out..So please pray!

Ophthalmologist visit

I took Bristol to Nemours for her bi-monthly ophthalmologist visit the day after her EEG..I was concerned she may not feel up to it but did great..nothing new..we talked about patching her eyes which she hates! She wore her tractor dress which she loves.. She used her walker to go all the way in the building and up the elevator and into the room..that is a long walk for her..and then back down again back to the car..I love the way she has the freedom to stop and look at little things that interest her..she loved it..

whats new

Bristol is now able to pull herself to her knees and play!

EEG

Bristol had her EEG last Wednesday..It was not fun..but very necessary!
She had this test because we suspect she may be having seizures..So this was the first step to take..
I had to wake her up at 6am and she likes her sleep in the mornings..so it was about 6:20 before she was fully awake..She had to stay awake until she had the test at 1:00...She got really sleepy on the way but we managed to keep her awake..They wrapped her in a sheet to help keep her still which she hated..All these wires were attached to her head with "glue"..She did great once she settled down and was able to go right to sleep just as planned..then they woke her up and did some things with strobe lights ...I laid right beside her on the bed..not easy to see her so upset but glad it's over..