"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..


"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..


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 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

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

Bristol is tring to clap her hands today..Photobucket

Sign here please....

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..

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..

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

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

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

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

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

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

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

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..
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?

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....

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!!!

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..