MRI tomorrow

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 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

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

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


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 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

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 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

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 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

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

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!

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..