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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..
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..
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...
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..
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..
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