2010

"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

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

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

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

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

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

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..

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

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..

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..