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..