Released!!

We were at therapy Tuesday for PT, OT and speech..B's OT give us some great news..She has been working with her for about 14 months and knows her really well..She told us we can Drop her OT appointments!!! Praise God!! One less appointment a week!! and besides that our OT thinks She is so close to age appropriate!!This is answered prayers!!!The only thing She is doing that concerns me is still not moving her fingers like I think she should like not able to pick up things with her pointer and thumb..So her OT give us some ideas and things to do at home that could help..fun things! So.. So Long OT!!!

LOOK NO HANDS!

Bristol's balance is getting better all the time! Here she is standing just leaning but not holding on with hands!

12 YEARS AGO

12 YEARS ago I took a job that I that I was not sure at the time I was ready for..I job that I thought I had prepared my self for..One that would last forever..One that was going to be beyond my widest dream the Best job ever..Being a Mom..
I remember the First time I saw  My Allison 's little face..It is unexplainable how I felt..I remember feeling like those doctors had taken my heart right out of my chest..Love at first sight!! She was perfect in every way..
And She was mine..I remember Travis and I just gazing at her in disbelief She was ours!! 
That day changed our lives forever..
Watching Allison grow older each year has been pure delight..(well most days)..She has blossomed into a wonderful young lady..
As beautiful on the inside as the outside!!
Caring, Ccompassionate, Loving, So Funny!!
There is not many days that goes by that she doesn't make us giggle and smile..
She is such a big help!!
She is so Wonderful with Bristol (and Madison when I am not watching).
I pray She lives the daysof  her life to the fullest..
I pray She always has spunk in every step..
You are a Blessing!

Allison I love you more then you will ever know!!
 I want you to know your Dad and I are so proud of who you are!!
Proud for you to call us Mom and Dad!
Happy Birthday Our Sweet girl!!

His Perfect Plan

About a week ago I was reading one blog that I read often. .it amazes me how many other family's there are that their stories are so like ours..This one  blog really encourages me evertytime I read it.. It touches my heart how this mother copes with all the unknown things with her beautiful girls! She had written

" His perfect plan"
Knowing his ways are better than mine.
Even though it doesn't take away the hurt,
It takes away the fear!

What shall we say to these things? If God be for us, Who can be against us.
 Romans 8:31 

Wow this explains so much..It expresses how I feel..
Some will be quick to tell me "Just trust God"
I was asking myself why is this making me crazy? why can't I just cope?
But after reading this It puts it into words that I just couldn't put to paper myself..
Sometimes the hurt is more than I think I can bear..
Sometimes I don't think I can face another day of Therapy or doctors..
But each day I am renewed.. When my little B wakes up and She is smiling before she evens opens her beautiful eyes..I know that He has a Perfect Plan! 
I have no fear that God is going to take care of Bristol..
I love the way my pastor prays "thank you Lord for everything you have already done for Bristol"
Everytime things seem to look gray, It turns out better than expected..
Thank You Lord for answering our prayers..

Bristol's lab results have finally come back and were read..All 3 tests were normal..This tells us that the leukodystrophy that was most likely she had tested negative..We will still watch her closely  for losing any skills she has already mastered.. and will have another  MRI next July..
We are so Thankful!

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!