The Burris Batch

A recipe or two

2011-11-18T07:42:00.001-08:00

I wanted to try some new things this week for dinner.. It seems we eat the same old things each week! So with the help of pinterset I found some new things to try..

Cowboy tator tot casserole
I Cooked
1 med onion
3 cloves garlic
Then 1lb hamburger
When done I added
Can of cream mushroom soup
1can of corn
Cheese (more the better)

Spray a baking dish with non stick spray
Put 1/2bag tator tots
then cooked mixture
Then remaining tator tots
Top with more cheese
Bake @ 350 until tator tots are done and bubbly
Enjoy!

I doubled this and with a little help that night we eat it all! So no picture..
Yummy comfort food for a cool day!
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Too long!

2011-11-17T13:19:00.001-08:00

It has been so long since I blogged last ! A couple of updates..

- Bristol saw the neurologist for a followup after the MRI I was upset about.. He was very pleased at how well she is doing! Surprised she was walking! Excited about the results of her MRI..he assured me we got all the information we needed from the no contrast MRI.. After lots of questions I wAs ok with it.. And super HAPPY he did not want to see her again..
He said the spot on her brain that was lacking melion (sp) which is the insulators around the nerves were no longer an issue!
All I can say is thank you Jesus! Another miracle to record!

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MRI #3

2011-10-04T13:41:00.000-07:00

Today Bristol was all set for an MRI.. We had gone last weEk to have her pre op and I had asked about the order and wanted to make sure it would be done with and without contrast..

So this morning we were to be there at 6:30.. We got settled in and at 8 they took her back..after being cleared by the antistelogist she was ready..I carried her back to the room where the machine is..they give her some gas and she was asleep in seconds..I was asked to go to the waiting room and they would be to get me soon..I took my seat in the waiting room with my mom and travis's mom.. We waited..

They called me back after just a little while, they were done and ready to wake her up.. She did great..woke up right away and was shouting GO!! She was ready to get out if there..

But after asking some questions why it only took a few minutes our nurse responded .. I only heard "no contrast""......I was so mad..after lots more questions and knowing we could not do anything about it now I was like Bristol..GO!!!

So they put my baby to sleep..3rd time in 3 months..(eye surgery, ear tubes) and did not do a complete job? So now I wait for the neurologist and genetic dr to call! With no answers more then likey...so frustrated!!

Blessed blessed

2011-09-09T19:59:00.000-07:00

Bristol has taken ofF walking in the last couple of days like you would not believe! I have been waiting for this for what seems so long.. It seemed so far away for the longest time and now she is up it is hard to believe.. I look around and here she comes all over the house.. Opening up cabinets getting into the pantry and I have a hard time telling her no! I want her to make up for the time she could not explore..we are so blessed!

Confessions

2011-09-08T19:26:00.001-07:00

I am so ready for fall..I am so addicted to pinterest.... I love to look at all the neat ideas that I can really accomplish..so over the weekend I make a trip to the craft store and gathered up some thing to make a wreath for our front door..it has been awhile since I made anything.. I was happy the way it turned out.

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A change

2011-09-08T19:22:00.001-07:00

We made the design to switch back to the therapy clinic we started at when Bristol was 4 months old.. It is small and the drive is much better. No interstate..it took a couple times for her to adjust but had done so well..

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OPEN

2011-09-08T19:17:00.001-07:00

A little someone is cruising through the house now and can OPEN the pantry..and has found a new favorite seat!

This pictures says I have been caught!

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Surgery day

2011-09-04T13:35:00.001-07:00

We had to be at Wolfson early! Bristol was in such a happy mood..

Terina had come that morning early to get Allison and Madison off to school, it was their first day. I tried to ease their minds and tell them not to worry and have a great first day.

We got all settled in and they gave Bristol something to really relax her while we were playing in the play room. Our opthmoligist and anistigoligist came in and spoke to us. When the time came for them to take Bristol she was smiling and so relaxed. I put her in the little boat and off she went without a worry in the world...we sat in the waiting for and tried to keep sane..after a hour and a half her dr appered just as he said he would..he told us everything went great and he thought it was a success..praise god..they would soon have her in recovery and we could see her..

She slept for a while and woke up and looked great! Her eyes will have some blood in them for about three weeks.. Within just about in hour we were on our way home..she has done so well..No outside play for one week and no water play for two weeks..we can handle that..

next week this time!

2011-08-08T21:24:00.000-07:00

Next week this time
Madison and Allison will have just the right outfit laid out for the next big day..
lunches packed and waiting in the fridge till morning..
hopefully snuggled in bed early..
And My Bristol has no idea whats ahead the next day..I am getting very anxious about her eye surgery..
I do not want to worry and really have had no time to get all crazy about it cause we have been so busy getting ready for school.. but as the house got quiet tonight and I was looking over our schule for the next couple of days, It is written there in bright red ink..hard to miss..Praying

Ear TuBes

2011-07-14T20:27:00.000-07:00

We had an appointment with a ENT a couple of weeks ago after Bristol failed her hearing test..we were told She had fluid in her ears and had hearing loss due to this and needed tubes.. I think She hears OK but the quality of the sound was affected.. Like maybe how you hear under water..Not really sure..I was also thinking maybe it could affect Her balance..

So She got herself a fancy new set of tubes..well really nothing fancy about it..It went so smoothly.. Only took minutes and She did Great! This picture is her just waiting for them to take her back..Just chilling watching Baby Signing times..They were wheeling Her back down to us within 15 minutes and She was setting up in Her bed saying Mama..We hope to hear a difference soon in talking!

July 4th

2011-07-14T19:04:00.000-07:00

I took the girls to ride in the wagon in the parade and took these pictures after..So by this time they were DONE..The heat don't mix well with them..Bristol was a little upset all the candy was gone and could not imagine way the kids would want to throw it out to the people.. She kept pointing to the basket and telling them BACK..

Allison with her Great Granny Evelyn..

My Girls are growing up Fast..

We ended our day with Great friends watching the fire works off the dock ..

VBS

2011-07-13T22:09:00.000-07:00

We have been listening to the VBS music for a couple of months and I have been preparing my lessons for the 1st and 2nd graders class..and We were so happy when it was finally here.. We look forward to it every year..this year was no different..I was excited to spend some time with Madison teaching her class.. at the end of every night i would ask her so how do you think i did? and She would say I guess ok.. what ok..I think it was great.. :)

EYE surgery..

2011-07-13T22:03:00.000-07:00

Bristol has been under the care of an opthmoligist since She was 2 months old..We started with one Doctor and then switched to another that better suited her needs ! Our Doctor keeps a very close watch on her and sees her every 3-4 months..She is so good when we go..She sits so still and usually does everything He ask..We have discussed her eyes not working together and what we could do about it..In her last visit we talked about her eyes not working together AT ALLl..Our doctor thinks now is the time to try to align her eyes with muscle surgery..
This was no big surprise to me..About a week before this appointment I felt God was telling about it..Quiet and still it is amazing what Our God will talk over with you! So the doctor just confirmed what I knew already..
So we started making calls to get it scheduled and She is on the books in august..until then we pray!

a Little bit about our Bristol

2011-06-10T08:23:00.000-07:00

Today I am linking up with Kelly's Korner and wanted to Share about Bristol..

She is our 3 rd daughter..She has taught us more in her 2 short years then most will in a lifetime ! We are so thankful to our Maker how choose us to care for you!

First we give God all the glory for all the progress she has made..She has been so blessed to receive the very best of care and we have searched for the very best therapist that fit her..
She is always happy..always wakes with a smile..
She was 2 months old when I was starting to have some concerns..After many doctors apportionment's and tests we were told She has hypotonia and oculomotor apraxia..We have also talked about speech apraxia..and possible motor apraxia..
She is treated through Wolfson childrens hospital rehab clinic. She is currently getting two physical , three speech, and one vision therapy a week..She is a very busy girl.
We also are involved in early steps and She loves their play groups..We go to little gym and O2B kids..She loves to paint..

Family Cafe

2011-06-09T20:13:00.000-07:00

We attended the Family Cafe conference This past weekend in Orlando..It was a Big Deal! There were Families there from all walks of life just trying to get information and resources to help heir Special Someone..I attended several conference's that were so helpful jammed full of wonderful ideas..Things I can to help Bristol right away!. We meet some very nice families and Children with some of the same issues that Bristol has and tossed around ideas and shared what was working best for our family and talked about therapy..What kind, how often..I shared with lots of family's how much we like Signing times videos.. These have helped Bristol's communication SO much..She can let us know her basic needs and her signs are getting better all the time..Our last night there we were setting outside and another family came over and we struck up conversation and their daughter sat by Bristol who was eating cookies..no surprise..We watched as the two signed very simple signs to each other to communicate..IT was no less then AWESOME..

Hearing test #2

2011-06-09T19:51:00.000-07:00

Bristol had a hearing test a couple of weeks ago..The neurologist recommended it the last time we saw him..Even though She had her first hearing test at 4 months old..And we were told everything was fine!

The audiologist found her ears had a lot of fluid..and she has had 2 different antibiotics in the last month and a half.. So we went into the booth and I thought She did very well..But at the end of the test we were told we needed to see an ENT..Another dr..YYAAHH..NOT..Also call our pediatrician and talk with them about the fluid in her ears..So we saw them the next day and She is now taking Zertec Daily..We are Praying to retest in 4 weeks and put hearing loss worries to rest..

Talent Show

2011-06-09T19:16:00.000-07:00

These Girls Rocked the House at our talent Show at school! Alli sang "this is the stuff" with her friend.. Madi did a jumped act with a group of girls and Clara my Niece sang all by her self "JUst another picture to burn"..They all did very well..Travis picked them up some flowers..And of course Bristol wanted a picture with them!

So long 1st Grade..

2011-05-28T10:37:00.000-07:00

Madison is almost done with first grade..She has done so well and should finish with all A's on her report card for the entire year! I am so thankful her school work seems to not give her any trouble.. Now her homework is a different story..She hates to set still at home and "do more work"...So it has been known for her to have to walk the fence at recess due to not turning her homework in..So She was very happy when She figured out this past Friday was her last in 1st grade..due to next week we will be out of town..So homework is a thing of the past for 1st grade.. She can be found gathering up change out of our cars and in our change jar to get goodies out of the snack shack on Fridays also..And may be known to use her lunch money if She forgets her money! I stood one Friday and watched as She give a couple of kids in her class money that had not brought any..She wanted everyone to get something..She has the Biggest heart of anyone I know! So Blessed to call her Mine!

This picture was taken on her field trip to the zoo.. we love to feed the giraffes!

                                      She helped pack our lunch and wrote on names on the bags.
                                                                        .I Love This!
                                                  They got a ~~Alot~~ a little squished in the cooler!

                                                The first grade also put on a play..MAdi was a
                                                                          Little blind mouse
                                                               with a couple speaking parts..
                                                                      She did very well!

So.. So long first grade!

p.s. Queen of the monkey bars

Bristols Birthday

2011-05-27T11:30:00.000-07:00

These pics were taken on Bristol's 2nd birthday! She is making the transformation to toddler hood more everyday! OOHHH how we Love her!!

Clay County Fair

2011-05-10T21:06:00.000-07:00

We look forward to the fair every year..it is always a good time..Alli and Madi participated in the hay bale decorating with 4H and did a great job..

Alli also entered a painting and won "best in show" for her age division..

Bristol loved riding in her wagon and seeing everything!

Madison made some fudge and also earned a ribbon!

Bristol was enjoying some time stretching her legs while Madi rested hers.. : )

Bristol reading the map..

We sold lemonade at our 4h stand..It was nice to talk to all the people that came by in the old Florida area..

I dance!

2011-05-10T20:49:00.000-07:00

So you might already know that some things do not come so easy for our sweet Bristol..This also includes her speech..She has been in speech therapy for over a year now and it has been a very slow process..We have discussed apraxia of speech..meaning the words get lost from the brain to the mouth..I do not realize just how behind her speech is until we are around other small kids..And it is not so easy to answer
" Why doesn't Bristol talk?"..to another 2 year old.. but I try to with a smile..
So today we were at the big girls talent show practice and all the kids were dancing on the stage..I was talking to Bristol as always explaining to her what they were doing..and then she said something..I did not get it the first time ..but the second time I got it loud and clear.."I DANCE".. She said..She wanted to dance on the stage too..I was excited for her 1: to put two words together..2: to express what she wanted..

I am aware this may seem so simple to some but for our Bristol it is yet another answer to prayer..

play group

2011-04-30T21:41:00.000-07:00

I take Bristol to a couple of playgroups provided through early steps and she always has a good time..This was our first time at My gym..when we left She was asleep before I pulled out of the parking lot!

It is wonderful exercise her her and She loves the circle time with the songs!

can't wait for our next time!

2 STEPS

2011-04-30T21:35:00.000-07:00

This little smiling girl has so much to smile about !! Just a couple days ago at physical therapy She took 2 independent steps!!! I was totally surprised and could not believe my eyes through my tears!! Something that seemed so distant! yet so within reach.. Something most take for granted..Including me with Alli And Madi..
We have been encouraging B to stand alone, and She has been trying so hard..Her little body has to work so hard to just accomplish the smallest things it seems..But She is getting stronger ..I notice little things every day..When days seem to be so long her little smile always gets me through!!

Park Time

2011-04-13T22:05:00.000-07:00

doesn't get any better then this!! oohh how I love these girls smiling faces!

Alli is so good with Bristol!! and such a big help!

My Madi..

Happy Happy

2011-04-13T21:58:00.000-07:00

Changes

2011-01-17T18:32:00.000-08:00

This is a picture of B the first time She went to therapy!! It seems like a life time ago! She was so tiny and the road seemed so long!! We make a great number of friends at the small clinic we visited in Fleming Island 2 or sometimes 3 times a week..

But now we are in for some changes!! Her Awesome PT is now in the downtown clinic.. So we moved there too!! Going to take some getting used to But We will adjust..Looks like She is liking the toys in the waiting room already! Her smile lights the room up!!

Outside fun

2011-01-17T18:13:00.000-08:00

                        These girls loves to be outside! And B is getting big enough
                                               to hold her own with them..
                         Watching them play you can't help but to smile!!
                                             We are So blessed!!

They prefer a picnic outside over just about anything! doesn't take much to make them Happy..Simply Childhood!! No Worries!

LIvestock Judging

2011-01-17T17:57:00.000-08:00

I took Alli to Gainsville to a Judging clinic for 4H a couple of weeks ago and Don't know what I was thinking! Not at all what I had imagined!! I was thinking cozy classroom with alot of video about animals..LOL..

NO..covered, Cold, Damp, open arena.. But She had a blast and I survived..

I felt like this sheep and I had alot in common..wanted to be anywhere but here!

Any thing for you my dear!

Christmas 2010

2011-01-17T17:46:00.000-08:00

What a difference a year makes! MY how our girls have grown and changed!

Winter Jam 2011

2011-01-17T17:27:00.000-08:00

We had a blast!! Got there early and found us some good seats and watched with amazement as the place filled up quickly!! So awesome to so many young people that Love the Lord!!

Madison said "I bet there is a hundred people in here!!"

And This girl can sleep ANYWHERE!! She goes to sleep with the chickens anyways! So She snoozed the last couple bands away and woke up for the final band Newsboys to take the stage! Best $10.00 we have spent in a while!

In a blink

2011-01-17T13:07:00.000-08:00

The day B got her very own walker!! Thanks Papa!!

Easter At church

All dressed up!

Rocking at cracker barrel

Girl loves her Daddy

Maybe his truck a little more!

Don't get many pics like this!

Seems as though in a blink this year as gone by!!

Released!!

2011-01-17T13:02:00.000-08:00

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!

2010-11-30T17:25:00.000-08:00

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

12 YEARS AGO

2010-10-26T21:14:00.000-07:00

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

2010-10-09T11:21:00.000-07:00

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

2010-09-26T14:57:00.000-07:00

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

2010-08-31T10:42:00.000-07:00

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

2010-08-27T16:01:00.000-07:00

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

Neurologist visit

2010-08-22T13:58:00.000-07:00

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?

2010-08-22T13:24:00.004-07:00

"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

2010-08-14T12:31:00.000-07:00

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

2010-07-28T20:57:00.000-07:00

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

2010-07-17T22:03:00.001-07:00

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

2010-07-17T21:59:00.000-07:00

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

EEG

2010-07-17T21:55:00.000-07:00

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

2010-07-13T21:10:00.000-07:00

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

2010-07-10T21:48:00.000-07:00

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

2010-07-10T21:25:00.000-07:00

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

2010-07-09T10:14:00.000-07:00

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!

2010-07-02T18:23:00.000-07:00

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..
PRAYER CHANGES THINGS!!

on the way!

2010-05-30T19:47:00.000-07:00

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

2010-05-20T21:51:00.000-07:00

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

2010-05-20T21:38:00.000-07:00

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

2010-05-17T09:58:00.001-07:00

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!

P1080409

2010-05-17T05:18:00.001-07:00

P1080409
Originally uploaded by burris batch

2010-05-10T21:43:00.000-07:00

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

2010-05-09T21:35:00.000-07:00

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

2010-05-05T07:31:00.000-07:00

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..)

2010-05-04T18:47:00.001-07:00

easter 2010
Originally uploaded by burris batch

gymboree

2010-05-04T18:40:00.001-07:00

gymboree
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

2010-04-18T21:16:00.000-07:00

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..

something to think about!

2010-04-12T15:57:00.000-07:00

In the movies!! all smiles!!

We took the girls and a couple friends from church to see "Letters to God" Sunday after church..I was surprised how good it was..It totally stirs your emotions up..Gives alot to think about..and so much to be thankful for..

Our lives were turned upside down about 11 months ago when we started the roller coaster ride with Bristol when she was 2 months old..I remember the day I had her at the doctor for them just to take a peek ..I was worried she wasn't tracking anything with her eyes..she wasn't looking at my face when I talked to her...and I was so worried she had not smiled yet..Although I didn't tell the doctor..Because I know they would say all baby's are different..give her time..I thought they would say, "she's fine Mom".."Take her home".."Nothing to worry about"..But instead the doctor fell silent for several seconds and said yeah lets get her over to see the oththmoligist this week..

I often think back to the days of leisure before I questioned anything about her health..I love those pictures of us holding her that first Easter.The first we celebrated as a family of 5..My 3 beautiful girls standing on the porch of our newly built home..Taking lots of pictures..The Big sisters wanting to hold Bristol with their picture with her alone..
I think back to that morning and remember just thinking we had things to worry about..

It seems like a life time ago..Our lives have been so busy with appointments and THERAPY..that is doing wonders for our darling..

You never know what life is going to throw your way..I am so Thankful Our God chose Our family to care for Bristol!!!!!!

Covered "more chicken pox"

2010-03-20T10:47:00.000-07:00

B has taken lots of baths..

This helped more then anything..

And she loves to play in the water..
Always a smile..

CHICKEN POX on your Birthday

2010-03-20T09:57:00.000-07:00

Well need less to say B enjoyed her first birthday cake..She wasn't feeling so good that night..but that did not slow her down...the more the girls giggled the more she tore in..

I noticed a spot on her head Wednesday night but we had been outside so thought a bug had bite her and thought nothing more of it..So Thursday morning getting her ready for PT I saw 2 more around the same area..So after PT I was changing her and decided we should call the DR..she had something...

A little cake for Daddy..

So the Dr said come on in as always..they are so good about that..we waited and waited..by this time I was positive she had chicken pox..She had little red spots coming up faster then I could count..when it was our turn to see the DR he said "no way..I haven't seen chicken pox in years" But sure enough he was surprised to say yes Chicken POx...

By that night she had red spots all over and it was obvious she was ITCHING...It was a blessing she didn't know to scratck..she rubbed behind her ears a little but other then that she was a little trooper..so we give her the baths every couple of hours to help..benadryl, and lots of cuddling..

The girls wrapped up some things we had gotten her for her birthday and she was happy with the paper more then anything else..It is a god thing we are celebrating her Birthday next Saturday, Because this past she would not have been good company..

Happy Birthday B..

We love you more then you will ever know!!

look at me now!!

2010-03-20T09:22:00.000-07:00

New things are happening new things...

B is now able to get her self up on her knees and hold herself in this position for about a minute!! It takes so much effort because her trunk is so weak, but she is getting stronger daily..
And she can get herself back into setting from her belly..This is big stuff!!

Plans for the big day..

2010-03-08T10:49:00.000-08:00

I am trying to get things together for B's party..It will be here when I turn around..The invites are all most done , just have to go print out the picture to go on one side..and having a hard time choosing..Address's on the cards, and hopefully in the mail tomorrow..

I am making her banner and something to put on the front door..pulled out some scrap book paper I have had forever!! And picked up a new stack and some ribbon to match..

Lots of sweet treats arriving soon..

Ot evaluation

2010-02-24T20:17:00.000-08:00

This morning to our surprise, B had an evaluation in her OT session..This is something that done every 6 months and we talk about goals and progress we would like her to make..

So today we went in a room she hasn't been in before and she was very distracted..

So we closed the door and the blind in the window and that help a little..

Our OT asked B to take some block of a stand..and after a couple of tries she did with no trouble..

She asked her to put them back and she could not do this..

She showed her a toy with a string attached to it to see if she would pull the sting to pull the toy to her..no such luck..

She gave her some puffs and watched her pick these up to eat..

She asked her to give her a block to see if she would release it in her hand..

Not yet..

So after all the little test we talked and come up with we think she is functioning at about 8 months OT wise..

After OT we had speech which is going so well..B is eating and starting to feed her self with ease..and wanting to do this more..she is losing interest in the spoon fast..And no more baby food for her..she is on to way more tasty things..she is chewing great and keeping her tongue in the right position..something I had never noticed until speech..

We talked about introducing her to a cup but not one she has to suck from..just sip..which equals mess.. :)

We talked about mixing her formula with some whole milk and slowly changing over..I assumed we should keep giving her the formula for a while longer but our speech therapist said "don't hold her back" she is ready..we also talked about taking her bottle at one year.. and after thinking about this a lot and taking to Travis we have decided to wait on that..

It wasn't until last week that she really started holding her bottle on her own..I think we should not put a number on these kinds of things and watch to see when B is ready..

I look at it like you would not take a baby's bottle at 8 months so why would I consider doing this now..So many decisions..I don't want to enable her or hold her back in any way..but still want to enjoy every stage of her life..

11 months

2010-02-24T20:03:00.000-08:00

our B is 11 months..can't believe in just a couple weeks we will be celebrating her first birthday..And we will be "CELEBRATING"..I have plans in the works..

She has made so much progress in such a short amount of time..

She is so motivated..And So Happy..Always smiling..

I love when she wakes up..She has smile before she opens her eyes..

Her spirit just shines..

she is eating so well..

Drinking small sips from a cup with help..

making progress every day feeding her self..

scooting all over the floor..faster every day

All over the house in her walker..

She can now make it go where she wants, and having so much fun getting in the trash..which has found a new home in the laundry room..ha ha..

Madison's 6th birthday

2010-02-24T19:54:00.000-08:00

Can't believe how fast time goes sometimes and other times it just drags..

Our Madison turned 6..wow.. doesn't seem right..this past year has had me in a little fog..We have been so busy..but 6 it is..

She is the light of my life..so carefree..so messy.. so compassionate...so pays attention to every little detail..We call her our fashion police..She tells us "are you wearing that"...

She is doing so well with the school change and reading up a storm..I love to listen to her sound words out..she gets so excited..

We had a small party at home with family and a few friends..lots of laughter and good times..

We are so blessed..

2010-02-13T09:50:00.000-08:00

"Sensory Issues"

"what" never heard of that before..I am not sure I understand it..

But needless to say we will do what ever..

So Tuesday in B's Ot session we were talking about her Really over reacting sometimes with just a small touch.. And the things I would think would make her freak out she doesn't..
Also her muscles seem to be asleep sometimes..making it hard to support her body..

Alot of this is so hard to understand..

So our Ot gave me a soft bristle brush, something like you would see doctors using to clean their hands before surgery I guess..

So the plan is to "Brush her "every two hours following with a massage to the muscles stimulated and joint compressions..
"the proprioceptive firing provides a flood of strong calming or inhibitory input to balance the effort of the brain centers that are firing so much excitatory flow" yikes..

All I could say is I will do my best..
This is a proven technique.we should be positive changes within several days..
time to brush..

call us crazy..

2010-02-09T20:18:00.000-08:00

We had a super busy week last week with an appointment everyday..Monday B saw the opthmoligist for her 2 bi-month check..He told us he saw some progress and changed the pattern to patch her eyes due to her left eye being a little weaker..

We had ot, pt and speech all twice and had a play group we tried out Friday..

This was fun ..I think B enjoyed it..

It is so hard to label your child as special needs..I still have a hard time just saying it, but it is was it is..And our B is very special that for sure..I told Travis we were going to the play group for special needs children and he said what for, why?

speech

2010-01-14T11:18:00.000-08:00

This is Madison's idea of speech for Bristol..and B likes this pretty good too..Sunday morning we were putting the finishing touches on lunch for after church..We were having some friends over..and Madison was licking the bowl and B was helping..Little tastes like this is why our little B is not liking baby food any more..Why eat blue berry oat when you can have home made cream cheese icing..This was Her first official day in speech therapy which is actually working on feeding..She is extending her head way too far back while feeding and we has a weak tongue..So we are doing some exercises with her every day giving her input to the muscles in her mouth, tring to just make her more aware..We still thicken her bottles with rice cereal so it doesn't choke her and she has more control..We are using the puffs to crumble in her food with every feeding to introduce her to texture..And she is doing so well with this already..We are introducing her to juice with this cup you see..it bends and is see through so we can correct her tongue if needed..she wasn't liking the way we wanted her to hold her head down while she drinks..I learned so much in this hour session ..
She is such a little trooper..usually she is happy the entire time ..

2010-01-14T10:57:00.000-08:00

Look Who's setting up unsupported!!!

B has been setting on her own for a couple of weeks, but just started with no support..She is making wonderful progress..

And I read on another blog this morning..We are learning to celebrate

"Inch stones"..

not milestones..

2010

2009-12-31T21:24:00.000-08:00

"2010" what, that sounds so crazy, so far from now, so in the future , yet it is here..

It makes me feel a Little old..

We are ready to embrace this new decade and see whats in store for our family..we have grown closer in 2009 then I thought was possible..As the girls get older it is becoming easier to find things we all enjoy doing together..They each have an idea of what fun with the family is and trust me it is not the same..And yet so soon B will be telling us what she thinks is fun..

We have had a roller coaster ride this year though all aspects..emotionally, and financially..But I know it is God's way of bringing us closer to him.. I have never worried about anything as much as I have about the fear of unknown with Bristol this year..It has been so hard to just do what has to be done in our daily lives some days..I praise God she is doing remarkable..though every doctors visit I just wanted them to tell us what to expect, and though I think they had expectations of what was to come with her, they never simply told us what.. just the fear of what to expect is very hard..Yet I would have not tolerated anyone telling me what she would not be able to do..Only God himself knows what our B will accomplish and I think it is going to be Big..My prayer is through her struggles her Light will shine so bright..and maybe soften the heart of someone that needs Jesus..

It seems after one appointment with a specialist they give us a whole new set of worries..Things I haven't thought about and never noticed but now worry about..I know God does not want us to worry ..This is so hard..

Christmas was Merry

2009-12-30T20:55:00.002-08:00

It doesn't get any better then this..Three Happy Girls Christmas morning!!

Our Christmas was merry alright..We stayed at home all day..It was nice not having to go any where..The girls slept in later then I had expected, but when they did wake up they were so excited..And like every year we have to wait for Travis to take a shower before he comes to open presents..HE is worse than a teen age girl some times..ha ha..Bristol had no idea what was going on but knew something was different than most mornings..As always she was smiling..

We had ham and dressing and all the yummy fixings for lunch and more family and friends over for desert later that night and the kids played the Wii..We had a good time watching that..My family is so blessed!! And for that we are Thankful..

p.s. I am going crazy getting these pictures in the order I want them.....

A little fun with OT

2009-12-22T08:49:00.000-08:00

B at OT...she loves to swing.. who knew this could be so good for her..it helps her gain strength through her trunk as she feels and tries to keep her self balanced.. I think we are going to try to create something like this at home..we will see..let you know how that goes..
B is looking for her Nana here.. she know she will rescue her when she has had enough!!

Neurologist visit

2009-12-21T07:01:00.000-08:00

This smile lights up my world!! After the doctor we always stop at the good ole Cracker Barrel and B had her share of mashed potatoes..yummy..
Dad and B in the DR...

We went to see the neurologist last week and had our 6 month evaluation with our pt..

At the neurologist we talked about B's soft spot on her head being bigger then I thought was normal and her bearing no weight on her legs still..The Dr suggested some blood work to get her thyroid checked and wrote a order to put in the computer to have a MRI of her spinal cord so maybe we could get an answer for the lack of weight bearing..I hate when they make me decide if this is necessary..we did do the blood work already and everything was normal..But we are going to wait on the MRI..

At the pt evaluation,we talked about that B has meet all the goals that were set for her through the last six months and things we wanted to work on in the next six months..We would like her to be able to get into a crawling position and be strong enough to hold this position for a couple minutes..so we are working on all kids of little exercises to get more upper body strength..we talked about some kids never crawl and go straight to walking, this may be the case with B..but we would like to see her crawl..it is very important developmental..

She is making great progress..WITH MUCH EFFORT..I so took for granted with the other girls that they meet all the little milestones and never struggled with anything..I dread taking B to the pediatrician for well checks and answering all the questions about the things she is not yet doing..

Everything Bristol does we get so excited about...no matter how small..we are her cheerleaders and she loves us to say "YYaahhh!!!" she claps her little hands ..we love her sooo...we are so thankful for the joy she brings to our family!!

Chewing, Chewing

2009-12-15T19:45:00.000-08:00

I thought a tooth was on it's way and I was right..B got her first tooth a week ago and looks like a few more should be right behind this one..poor thing, she is chewing on everything she can get her hands on..I was cutting up some celery for the girls lunches and she helped herself to some..If it makes her Happy I am all for it..

neurologist tomorrow

2009-12-13T20:43:00.002-08:00

So tomorrow B has an appointment with the neurologist for a follow up..I have a lot of question wrote down I would like to get some answers to..but we'll see..She is doing great with the patching of her eyes..she is not fighting near as much as when we started..can't seem to see if it is helping yet thou I think it may be too soon..and yet I can explain why we are doing it I was not aware her eyes were not turning in for near objects.. Tuesday B has an evaul with our PT..we will talk about her progress and set some goals for the next 6 months..I know B is on her own time line and she will do things when she is ready but it is so hard to see her struggle just to set unassisted or try to pull herself on the floor to try to get to her toys..I want to know we are doing everything within our power to help her..

Cleaning out for Christmas

2009-12-08T20:35:00.000-08:00

I think most know that Bristol goes to therapy at Wolfson Rehabilitation in Fleming Island..It is a blessing to have a place so kid friendly to take her..She is treating with a physical therapist, occupational therapist, speech, And vision We are there 3 times a week..

I have decided to help out having a toy drive for them..they are in need of bright color, hard plastic toys that light up or sing or move ...anything that would keep a child's attention and make their treatment fun and not seem like so much work..they use these toys while doing treatment with the kids..they mostly run on donations and they are really running low..they do take gently used or new donations..if you want to help I would gladly collect these things and take them in for you..so if you are making room for new Christmas toys and have something let me know.Thanks in advance..

A little update..

2009-12-03T08:41:00.000-08:00

Monday we were at the opthamologist again with B for a followup..Since she has been diagnosed with oculomotor apraxia they want to follow up every two months..The Dr told us he expected her vision to improve some as she gets older and not get any worse..he is concerned that when she looks at something near her eyes turn out...so he wants to start patching one eye each day for 30 minutes and alternating eyes..he patched her eyes during the visit and she didn't seem to mind..but at home is a different story..30 minutes doesn't seem like a long time but when you cover your eye for that long and you don't see well with either eye I know it is scary for her..I am trying patch her while she is distracted with the older girls and that helps keep her mind off it so much..
We have finally started to get weekly visits from a vision therapist from Florida school of blind..They come to our home and work with B on all kinds of things and give me suggestions on ways to help her that had never crossed my mind..
We have taken a step in the right direction with a new occupational therapist..B will be treating with 2 different ones twice a week ..and while this is not ideal..we would rather have one so they know her better.. It is the best we can do for now and I think together they will be an awesome team..
B's physical therapy is going great..we have the best pt...she is working on upper body strength and pushing her self up up in a crawling position..this is really hard work for her but she is making progress..
next week B goes to see the neurologist again..
my #1 worry is she still is bearing no weight on her legs..
so please continue to pray..God give B to us..and we are counting our blessings..

Thanksgiving

2009-12-03T07:26:00.000-08:00

Thanksgiving

"express gratitude"

I have so much to be thankful for..

These five girls are very high on my list..I am so thankful we can all have a holiday together and all the girls be there..We did miss the big hunter his year again and I hope he blew a big one down or at least had fun tring.. My brother and his wife thought B might need some puppy time..isn't this the cutest puppy..and I think I might have myself an animal lover..B is very interested in all the animals she has seen and a very few she has touched..I am kidding I am tring to let her explore as much as possible..She looks pretty happy here..
B had filled up on banana pudding and is one happy girl..
She is pretty fond her her Nanny..can you tell..

cookies..

2009-12-03T06:59:00.000-08:00

If she doesn't make your heart shine..you better check to see if you have one..She lights up our lives everyday..and I think we have found the window to her heart..COOKIES..She usually has a hard time picking things up on her high chair tray but when she lost her cookie she tried until she got it..I mean she was on a mission..she even felt around for it when it drooped in her lap.. The messier it is the better she likes it..
She even shares..just kidding get your own..

Halloween

2009-11-04T11:14:00.000-08:00

Halloween was so much fun..We dressed the kids and went to a friends house and went on a hayride trick or treating..They had a blast..the battery went dead on my camera so these are our only pictures..Madison was so excited about her costume..I sewed it in about 40 minutes..(Don't look to close).Don't take much to make them happy..Bristol did not want anything on her that was even just a little uncomfortable..she is so funny..and Allison

wore her gator clothes..and that and her happy..Bristol also sported her Gator cheer!!!

school happenings

2009-11-04T10:42:00.000-08:00

The girls have been so busy with school things lately.. I went with Allison on her field trip the the Cumber Museum.lots of fun.

Madison at her bike rodeo..

And her class participated in chapel and did a little skit..it was to cute..

And Allison recieved her Basketball uniform and she is so excited.we love going to cheer her team on at the games..

Our sweet baby

2009-10-30T20:41:00.001-07:00

Bristol is tring to clap her hands today..

Sign here please....

2009-10-14T08:20:00.000-07:00

Monday morning a parent advisor came to our house from the Florida school of blind, for what I thought was going to be an evaluation but turned out to be mostly paperwork.She did answer some questions for us and told us what Bristol has been diagnosed with Oculomotor Apraxis is very rare and she has never treated some one with this before...It is such a long road to get things going for any kind of therapy...We were told Bristol may not qualify for treatment due to her diagnosis..After getting her medical records we should know more..

Bristol has days when she is not motivated at all..These days are scary for me..She sleeps alot and just lays still..she may smile but just when talked to..She has days like these often..Our PT recommended keeping a journal of her behavior daily so we can refer back this..

This morning we saw a new OT that we loved..I think we will see her again..This means Bristol will have OT Mondays and Wednesday And PT Tuesdays and Thursdays...And vision hopefully started very soon..

Something She likes..

2009-10-11T19:34:00.000-07:00

I found something Bristol likes besides the applesauce she eats every day..We have tried all kinds of baby food and she will not eat anything except the apple sauce..

Tonight I got her some baby yogurt and she loves it..She was chasing the spoon with her mouth..

Tomorrow the vision therapist comes in the morning and we are anxious to see what information she has for us..

2009-10-06T20:37:00.000-07:00

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Prayers go up, Blessings rain down

The difference in Bristol in the last few days is remarkably..She is looking everywhere and seems to be focusing on things several feet away...Today at therapy she did so well..Our therapist was very pleased...She is putting her hands on her bottle while she drinks it..She is entertaining her self longer and longer while playing on the floor..she is reaching for her toys when she drops them..I am so grateful for every ones prayers and ask that you continue to pray and please pass our request on to any one else you know that prays..We are expecting God to do Great things for Bristol..

Boys Ranch

2009-10-06T20:24:00.000-07:00

So over this past weekend we took the girls down to Live Oak to the Boys Ranch..This happens every year the first weekend in October..The girls look forward to this for months..

Bristol had her first experience setting on the pony and if my sister has anything to do with it, it will be the first of many...

The girls ran around and had a great time..Not many pictures of Allison Because she did her own thing most of the time and told me just to give her a call if I needed her..She thinks she is sooo grown..

I love the picture of all 5 girls, Allison, Shelby, Madison, Clara, and Bristol...they look like they were the dirtiest girls there..

Congrats to Shelby for winning high point for the weekend..

Happy Girl

2009-10-05T05:07:00.000-07:00

Our Bristol is always so happy..This is her waiting for her therapy appointment Thursday..She is doing so well sitting with support..I am so thankful we were able to start her therapy so early...So many children I read about didn't get that opportunity..And some struggle to get their 30 minutes a week..We are so blessed to be able to take Bristol twice a week for 30 minutes for physical therapy and 30 minutes for occupational therapy..Next week she is going to be starting speech also..

And we are so excited about some one coming to our home from FBS (Florida School of Blind) to start Vision therapy..I have been on the phone for weeks about this..and I am so excited to get this started..

oculomotor apraxia

2009-10-02T08:26:00.000-07:00

We had Bristol at the opthamologist this week again..She has seen the same doctor three times and he always told us about the same thing every time and come back in six months..After several sleepless night and talking to other doctors I thought we were not getting good information so This time when I made her appointment I insisted we see another doctor..so I am so glad we finally got some information..The opthamologist told us she has oculomotor apraxia...As far as I understand this means she doesn't have very good control of her eyes muscles..making it hard for her to see..The doctor told us no glasses or surgery would help..This is also a kind of syndrome that is very rare..Our pediatrician had never treated any one with this before..Bristol has an appointment again with the geneticist that has been following her in a couple of weeks.. with this diagnosis comes alot of fear of the unknown..

So all we know to do is pray..

Busy are we

2009-09-23T09:06:00.000-07:00

Bristol is liking the bumbo seat more and is building more endurance seating in it..It helps strengthen her tummy muscles..She really likes setting under the baby gym... We have been crazy running Alli to volley ball all over the place. But we are so loving watching her and her team play.We have been to alot of the varsity girls games as well..

This is Bristol watching the game..She is doing well with all the noise and commotion which makes me super happy..I want her to enjoy all the things with the girls and not be scared of all the sound and so far she is doing great..
Bristol is eating some baby food now.. So far all we can get her to eat is something with apples or apple sauce..she is not having carrots or peaches....she is doing better every day with learning to open her mouth for the spoon and when she is ready for another bit..and keeping more in then spitting out as she swallows..

And my little helper..Madison wanted to help feed Bristol and I watch her when we are in the kitchen in the evenings cooking dinner..Bristol loves the extra entertainment..and does just as well with Madison feeding her..Madison put on her apron so she wouldn't get any on her...

Bristol 6 months old

2009-09-19T08:14:00.000-07:00

Our baby is a big 6 months old today...Wow has the time passed quickly..We love her sooo much and enjoy every minute with her..Bristol's personality is really starting to shine..She can be such a little clown..She is always happy..She is doing awesome with her therapy..She now goes to physical therapy and occupational therapy 2 times a week for a hour.. and I see improvement each time we go..it is a hassle sometimes as we are rushing out the door to take the big girls to school and get her to her appointments on time but worth every effort...She is making progress every day I feel like.. These are some quick pictures I took of her to mark her 6 months..At this point she had been in the bumbo seat for a few minutes so she was getting tired..and beginning to Lean a little..

She is pure Joy...I can't even describe the happiness she brings to us...she is now rolling over and playing with her toys..She is starting to reach for things some now and tracking some with her eyes.. She is paying more attention to the girls now and often giggles with them..I love to watch her laugh with them..

We took her in for her 6 months check today..We talked about what the opthamologist had told us a couple of weeks back..our Dr said he had never saw another bay with hypotonia that it affected their eyes and thought it was best we got a second opinion..so we called the Dr he wanted her to see..I was not really happy the way they spoke on the phone and was disappointed when they told me they did not take our insurance and the cost would be $5oo.oo.. I want her to have the best of care but this seems outrageous..I am confused and don't know in what direction to go in now..I also talked more with the vision therapist from FBS (Florida school of the blind)..She should have us an appointment very soon and I am hoping she can tell us what direction to go in as far as a second opinion..

Ophthalmologist visit

2009-09-02T19:01:00.000-07:00

Today I took Bristol back to see the ophthalmologist..I was so dreading this appointment..the bigger she gets the harder it seems..I did not want to have to hold her little hands down while they put drops in to dilate her eyes..Thank You Lord, we did not have to do this today..He just looked at her eyes with the lights dim..Since we have been there she has been diagnosed with hypotonia..He told us this explains her eyes working to way they do..Because of the low muscle tone she doesn't have good control over her eyes..this is why she turns her head and looks through the corners of her eyes..So he will see her in 6 months again..She is learning to hold her head so she sees better..It breaks my heart some times to see her working so hard just to look at me and smile..She goes to sleep with a smile and always wakes with one..She is now rolling over..this is great news..We have been working with her everyday with the exercises they show us in physical therapy..

Tomorrow morning I take her to her first evaluation for occupational therapy ..We will work on her gross motor skills and using her hands and arms more which she is hardly now..

Early Steps and more blood work

2009-08-28T10:15:00.000-07:00

I took Bristol to early steps today..This is a program state wide that helps with children that may have some special concerns..We got alot of information..and a lot of advice..She smiled the entire time...all through the bell ringing, rattles, light shining around the dark room..tring to get something that was dropped or at least following it with her eyes..Playing peek a boo...which I come unglued about because she does not tolerate her eyes being covered..I guess because she may not see well and when you take away what she does see it scares her..

They told me we need to start occupational therapy due to her not using her arms or hands at all..We hope to get some one that fits and can come to our home..

They also are going to refer her to FSB (Florida school of the blind)..They saw what my concerns were with her eyes and vision..And agree that she is not seeing well and that this is holding her back from developing on time..So we will get this going and wait until the doctors may have some answers..She has a follow up appointment with the Ophthalmologist next week..

When we were done there I took her over to Wolfson to get blood work the geneticist had ordered..she did great. we looked up our Nurse we usually use..she is super..she was able to get her with one stick and it was all over but the crying..for myself and Bristol...We pulled ourselves together in just a few minutes and we were out of there..And off to get those big sisters from school..

2009-08-27T18:51:00.000-07:00

Allison hard at work!!

Madison all ready, with her pink shoes..

Allison all ready..

How blessed am I so have the pleasure of serving breakfast to this bunch in the mornings..I can't think of any thing else I would rather do..

where has the time gone?

2009-08-26T20:08:00.000-07:00

So school was back this morning..I don't know where the summer has gone..The girls were very excited this morning as was I..We parked the car and I helped them get all their stuff to their rooms..Allison said she was going to find her patrol teacher so she could show her how to put her safety patrol belt on..LOL I told her I thought she could figure it out..And when I went through the line today she had it on..She was loading cars with an umbrella, when she got done she said she had blisters on her hands from all the Hard Work..OMG

Madison went right into her class this morning and didn't even wait for me..Hard to believe she is now in kindergarten....she said the door was far enough for me..she was a big girl..I watched from the window at the door a little while..she never looked my way..I am glad she is so confident..She was so excited to bring home home work and in about 3 minutes into it this afternoon she was complaining..So typical..

Bristol and I had some nice peace and quiet for a couple of hours..Shopping for some school supplies that we still can not find..So to bed early we go..

Almost time....

2009-08-22T11:00:00.000-07:00

It is almost time for school to start..we are checking our list and making new ones for things the girls need for school.Think God for uniforms...I took them to orientation yesterday to meet their teachers..I am as excited as they are almost..We are so Beyond Blessed to be able to send our kids to this school..The people their have such a heart for God..I love that they pour their little hearts out about their prayer request every morning first thing when they get into the classroom..Allison told her teacher all about Bristol and said "I have alot to pray about"...Madison shared with her class at church that she is "worried" about Bristol..Our family is going through this for a purpose..It has taken us by surprise, but I know Travis and I are closer and closer to God because of our circumstances...I have been singing a song just a couple lines cause that is all I know and they stick with me..

"the voice of truth says do not be afraid "

"the voice of Truth says this is for my glory"

" at of all the voices calling out to me I will believe the voice of truth"

Wednesday at 8:10 I will have a 5th grader and a Kindergartner!!!

2009-08-18T19:39:00.000-07:00

I will Praise the Maker that choose me to care for You...

Today Bristol is 5 months old..She is such a good baby, with such a sweet spirit..she is always happy..no matter if we have been at a doctors appointment on one side of town and then to the other to get to therapy or at home all day in her jammies...she may be tired but always smiles..she is doing new things all the time..just today she has started blowing bubbles..she has discovered her feet now and holding her toes..she lets us know what she likes and doesn't like..she loves her bath at night..I think she is getting stronger everyday..

I want to celebrate all the little things bristol does new every day...She brings so much joy to our family.. Some one is always Lovin on her..And she loves to be snuggled with..she is our little snuggle bunny..I am so Blessed to have been chosen to be her Mother...I love her more every day..