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


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!


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!


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..

More test

Today Bristol is scheduled for an EEG..and the fear of the unknown has me all tangled up!! She is having this test because she has had some signs of seizures..I noticed this a couple of weeks ago and after talking to a couple of people decided to call the neurologist..they said they wanted to run this next ASAP..so I have to get her up at 6AM and not let her go back to sleep until she is there at nemours at 1PM and connected to every thing ..I just know she is going to be a bear..This girl likes her sleep in the mornings..I know it sounds like loads of fun..I am praying it all goes smooth and we find no signs of seizures..

Dream night at the Zoo

A while back we went to dream night at the zoo!! it was so much fun..only a few hundred people are invited so it is not crowded and you can take your time and really look at everything..it is also in the evening so the heat was not so bad..

Bristol loved the treats they had all over for the kids ..especially the cold ones..

Alli and Madi always love the reptile house..
This was Bristol's first time on a merry go round and she loved it..We feed the giraffe and got a close look at a little alligator..

Not a mouse lover

We met some friends at Chunk e Cheese the other day..Bristol had a great time until the mouse showed his big smiling face..She was not liking him at all..Her buddies her didn't seem to mind.. Allison and Madison were with us also but if they tokens in their hands I don't see their faces..LOL
Bristol tried this little car..she was not impressed..It shook like crazy and she bumped her and and was Done..She was happy sitting on top of the table "counting her tokens" and putting them in a and out of the cup..

July 4th Fun

July 4th we had a full day! We started out with the parade..
Madi and Bristol had just finished their breakfast..
Madi wanted her picture in front of the shower curtain that we painted before we left that morning..

Bristol loved the parade..She just squealed when she was all the people on the sidewalk..and she was lovin the tractor pulling the trailer..
This is her at the end of the night..about 3 minutes before the fireworks..I was hoping he would make it but, she couldn't hold her eyes open another minute..
We spent most of the day at this water slide..The Kids had a blast..It took them a couple times climbing up there to get the courage to slide down But once they did..WOw they couldn't wait to do it again..and again...

It is a monster!
Bristol had so much fun doing her thing at the cook house..She was all over the place..I am so thankful she has something she can be independent with!

She slowed down long enough to have some home grown tomatoes..Yummy if you like tomatoes!
After the parade We tried for a picture with all 5 girls..
Madison and Clara watching the fireworks!

I love this picture of Alli holding Bristol..She is so gentle with her, And Bristol adores her..

We had a great day! one I hope the girls will say remember when...

Catch her if you can!

So Bristol got her gait trainer..We hope she will gain strength daily by using it and her trunk muscles will be ale to support her soon to be able to walk..she is doing great with it..getting around so nice..excited about being outside going where she WANTS to go.. She had Great time at VBS..She came into the church a couple of nights when all the other kids came in and sang she LOved it..she bounced up and down and clapped her hands..She has come sooooo far since last year this time..I remember going to Bible school last year, caring her around in a sling and she had very little emotion about anything..So much has changed..

on the way!

Well after much thought ...we have ordered Bristol a new gait trainer..It should arrive about Wednesday..We are so excited for her..Our PT let us borrow his a couple of days to bring home and give it a try and see what we thought..We used it outside and at church Wednesday evening..She was everywhere..all up and down the sidewalks..smiling so big..so we are waiting ..
p.s. could you hurry deliver person....

Pt was awesome today

Bristol always smiles through most of her therapy..She squeals when her PT comes out the door and calls her name.. Today she did so well..We are so excited about the rapid progress she is making..This afternoon in Pt she stood so comfortable and played..She also pulled her her in the ball pit unassisted..She loves the ball pit..They have this new chair she sat in and pulled her self to standing while holding on to a push toy..Just last week when Her PT was trying to get her to do this she was resiting, but not today..At the end of her session we put her in the gait trainer and she did so well..she is all around, so proud of her self in a standing position..taking steps on her tippy toes..We are so proud of her..

the search is on

The search is on..Bristol's PT talked to us about a gate trainer..they have one in the therapy clinic that she is going really well in..She is walking in it and enjoying being free to stand alone..
I have been on the phone and searching the web to try to find the best possible way to get one..We borrowed something from a local daycare we thought she might use in the mean time but it just didn't work out (so I am hauling it in the back of my truck..gotta get that back next week)...But anyways I thought the insurance was not going to give us any problem and we had things rolling only for them to tell me "this is not something that happens over night..this is a 6-8 week process"...WHAT.. so looks like we will be by passing the insurance and doing things our way..so should you see a yellow snug seat Bronco gait trainer any where let us know..ha ha

pickin time

We have been picking squash in the garden every couple of days and the girls are lovin it.. And Bristol doesn't care what we are doing as long as we are outside..

She loves riding in this wagon..It was a birthday girt from her Nana..Sometimes I catch Madison pulling her a little to fast, but no complaints from Bristol..

One proud girl of her squash!


Originally uploaded by burris batch


Yesterday while I was feeding Bristol I walked away to get something and she made an unhappy noise..I walked back over to her and and said you want More..she put her little hands together and made the sign for More..I was so happy..I asked her again and again to show me just to make sure I hadn't I wasn't seeing things..But sure enough she knew exactly what I was asking her and responded by giving the sign..
She has been introduced to some signs in speech and by her vision Therapist..but I did not think she was having any idea what we were showing her..but she has surprised me once again..I am so happy about this..Tomorrow I plan on finding a book with some More signs we can work on..

Mothers day

We had such a good day..but most Sundays are special to me..We started out this morning all together in my bed reading mothers day cards..Travis had gotten the girls each their own card for me..they were all very fitting..Madison's was silly..Allison's was so thoughtful and Bristol's put me in tears..
We went to church and it was Full..We had a full close to go along with that..I had gotten some frames for the kids to paint and was having second thought about letting them PAINT..but we just went for it and they had a wonderful time..They are all so different..I could pick out their frames by their personality..some painted in such a hurry while others took there time..they were all beautiful and so proud to hand them to the Mom's at the door when they were picked up when church was out..
We went to lunch and ate to much..then home for a nap that lasted to long..
I love Sundays..

1 year well check

B's 1 year well check was a little late due to her being sick with the chicken pox, then something viral for several days..but then we finally got an appointment she was feeling great..

We had lots of questions about her weight, therapy (to much, not enough),shots, blood work..all kind of fun stuff..after you talk to so many medical people I have to really think to recall what each one tells us to do..cause usually none of them agree..so this makes it all the more fun for me..
I am so thankful We have a handful of people she sees weekly that helps us so much..they are very concerned and so wiling to listen about our new worry for the week.. When we pull into the parking lot she squeals with delight..And when we go inside and they know her name she always smiles..and when her PT calls her new she smiles so big..We are so blessed to work with her therapist..

Easter Blessing (a little LAte..)

easter 2010
Originally uploaded by burris batch


Originally uploaded by burris batch

We took B to an early steps play group at Gymboree and she had a blast..She loved the tunnel so much Nana got her one of her own to take home..She also got some shakers, Because she really wasn't ready to leave those behind when it was over..We will be back..what a fun time..

Party Time

What a sweet day..

We celebrated Bristols birthday at home with lots of family and close friends..It was a beautiful day..She was a little overwhelmed with everything and was quiet most of the day..But I still think she had a great time..We ate until we almost busted and then had awesome cake..and then lots of presents..She got so many nice things..We are so blessed to be surrounded by so many people that love her and pray for her and our family..