Arianna had a birthday on june 25th she turned 5 years old. We went out for dinner for her birthday and she did really good with all the noises she even ate her cake really good she was even chewing some of it. I can't beleive that she is 5 already she has gotton so tall.


We went to Shriners to have her hips x-rayed again, everthing was pretty much the same as the last x-ray, her right hip is not dislocated and they couldn't see any thing with it that would be bothering her. The soccet is shallow from her not walking and using her legs. Her spine hasn't curved any either which is really good. they adjusted her AFO's while we were there so now she will tolerate them alot longer than she has been.

She also had her appiontment with Dr.Kornberg . That was a waste of time, we had to wait 2 hours for him to tell us that his therapists weren't equipped to work with Ari. Which is scarry because him and his therapist were who we were suppose to take her to for all her therapies when she was released for Brookes. He said he could cast her feet if we wanted to put her through it, but didn't really seem like he wanted to do anything. He referred us to a Dr in miami and said that her therapist would probably be able to work with Ari and maybe get her back into an inpatient rehab there.

Arianna also had er 48 hour EEG which only ended up being 24 hours. Her doctor got the information that he needed in 24 hours so let us go home. She is still having quite a lot of seizures and they are all brought on by her getting startled. He put her on Keppra and wants to take her off of the trileptol. He said that trileptol is not for the kind of seizures she is having and in some cases can make the kind she has worse. After being on keppra for a couple weeks she did nothing but cry through her therapies and anytime she was forced to work. She had a seizure that was about 1 minute long which she has never had (her seizures only last 7-8 seconds) and also has had a couple of ones where she just stares which she has also never done so we started to wean her from keppra . She is still very fussy and is not really trying at anything it has just changed her completely. We go back to the Dr this week I am hoping they will tell us we can just stop giving it to her now. He also said that she couldn't go to school and will have to be on the homebound program for now we weren't really sure we wanted her in school just yet. While we were in the Hospital for the EEG she got to play dress up and have her picture taken with Cinderella. I uploaded these already.

She has been doing really good in her VT sessions. She really likes the program that Mrs. Lois has on the computer. We have a joystick switch that she hooks to the computer and Arianna has to push it for the picture to come on. When she gets it to start she stops and watches it she has gotten so consistant with this. We have gotten this on video and will be posting it in the next couple of days.

Arianna is doing good.We had an appointment with her neuro last month and got great news. Last year’s eeg showed that she was having constant seizures in every part of her brain, and she is now only having seizures on her left and right lobes. They also want to do a 48 hour video eeg so that they know what her body is doing during a seizures and how often in she has them in that time frame. They are hoping to be able to see if the meds she is on are working or if they need to convince us to change her meds. They are not sure they want her to start school next school year because her seizures are brought on by noise that startles her they are leaning towards having her put on the homebound program so that the school will have to come to our house to do her schooling. Which is what we are wanting to do anyway. They also ordered complete blood work which all came back normal.

Arianna also had an appointment with her GI doctor last month just for a routine check up, she has gained 4 lbs since we were last there 7 months ago. She now weighs a whole 38 lbs. I have taken her off the formula that I made and stared blending real food up to put in her g-tube (at IMT‘s suggestion). Which is why all the weight gain for our princess I need to figure out how many calories are in everything I am giving her better before I cant pick her up anymore. She really needed to gain weight she had weighed 34 lbs for over a year , she was growing tall just not putting weight on.

We are taking Ari to see Dr Kornberg who is a pediatrics and physical medicine & rehabilitation doctor. We are hoping he will help us get Ari the much needed therapy that she needs. He is the Doctor who over saw the therapy that she got while still in Tampa General. We are hoping that she is at the point to be able to go into an inpatient rehab program. He told us when we were in Tampa general 3 years ago that once she got to a certain point in her recovery he would admit her into his inpatient rehab program at the hospital. And if she isn’t there quit yet then hopefully he will have some suggestions on how to get her to that point.

We also have an appointment with Shriners Hospital the first week of June. Her PT feels like her right hip is bothering her and wants us to get it checked out. She is afraid that her right hip might be starting to dislocate like her left hip. She doesn’t think that it is yet so hopefully they will have non surgical ideas on how to stop it if that is the problem. At our last visit they gave us a abductor wedge to put on her but it was to big so they had to cut off part of it and we only have one strap to hold it in place, which does not work well and she tends to just crush it with her legs so she doesn’t get much stretch anyway.

Thank you all for continuing to check up and pray for our little princess.

Here is some videos of Arianna from therapy, some of them are really old and she doesn't see two of the therapist anymore, I was looking through our videos and realized they never got posted so i figured I would do it now. Ari has been fighting a nasty virus for the past few weeks, I think she is finally at the end of it. The Dr's have ran test and can't find any infections so we just have to wait for it to run it's course. Her Dr admitted her into All Children's Hospital a week ago because she had immature blood cells in her blood, but when All Children's redid the test they didn't find anything so we got to come home. That was the first time we had been in a children's hospital and i was very impressed with the extent they go to make sure the kid's staying there are comfortable. Definitely was not the experience we had last time she was in hospital a few months ago. She also had a appointment with her Neuro Dr since my last update, they ordered a EEG to check on the seizures. We go for that on Monday and then will get the results next month. I really wish we had some specialists in our area for children I hate having to drive 2 hours to basically get a script filled. Thank you for checking in on our princess and for your continued prayers.

It is hard to believe that another year has passed by so quickly . Over the past year Ari ‘s alertness has becomes more constant. She also seems to be more cooperative as far as therapy goes. She is working really hard when we can get there. Her eyesight has improved greatly and she is also babbling a lot more. We swear she has even let a few words slip out every once in a while. On Christmas morning she was sitting in her wagon her daddy made for her and we asked her if she liked it and almost clear as day she said I do .She is paying attention to everything that goes on. She hasn’t come as far as we were hoping she would have but we are thrilled and grateful for the progress that she has made.

Ari hasn’t had much therapy since my last update between her or saydi getting sick and then Christmas vacation. Hopefully we will be able to get back on track with therapy this week when the kids go back to school. We are back to not having any OT therapist in our area so Ari will have Physical, speech, vision therapy and she will continue to go for her KI method treatments.

I posted some pictures from Christmas and a couple from her PT session . I haven’t forgot about the video I promised a few updates ago, I still haven’t found the cord for our video camera so I am going to have to order a new one. When I get it I will post that . We wish the best for everyone this new year.

Hope everyone is doing well, We had the H1N1 flu go around our house a couple of weeks ago and Ari’s Dr. put her in the hospital for 2 days just to keep a close eye on her and give her an IV so she didn’t get dehydrated (which was a nightmare in itself, will definitely be going out of town if she ever has to go into the hospital again.) and then got an ear infection right after. But she is doing great now. She has been really working hard at her therapy sessions. Her OT has been putting her on her hands and knees and she is crawling across the matt with him helping balance and supports her. She doesn’t move her hands (YET) so he has to move them for her but she moves her legs. I have a video of her I am going to try and get posted on here. She also took 6 steps her grandma took her that day so we don’t have it on video.

In her vision therapy she is tracking things consistently now and she has been looking at the pictures on the computer. Her VT gave me an awesome website to go to http://www.northerngrid.org/ . It has shapes that go across the screen and you can pick different color combos and have the option to have noise when it goes across the screen. You can also set it to where the child has to click a button in order for the shape to go across the screen.

We finally got Ari’s stander they delivered it while she was in the hospital and they came back last Friday to adjust it to fit her. She is only able to tolerate standing in it for about 25- 30 minutes right now but that’s longer than I thought she would. She is also still getting speech therapy once a week and to get the KI Method and PT when we are able to. We haven’t been able to get to Jacksonville for IMT in a while but we are doing IMT and KI method on her at home also.

I posted some new pictures of the kids and as soon as I find the cord for the video camera I will post that as well. Hope you all have a good Thanksgiving .

We have had a busy couple of months, with getting the kids ready to go back to school and all of Ari's appointments. Ari had an appointment at Shriners and had her hips and spine x-rayed all looked good, her hip is still out but hasn't change from the last xray about a year ago and her spine looks good. She also go new AFO's and they gave her a new pair of shoes with them. Now she can start using the walker we bought her.

We also took her to Sarasota Retina Institute for a neuro-ophthalmologic evaluation, she is still cortical blind but he feels that sometimes she is able to see just not all the time. We were hoping to learn of something that would be able to help her see but he said the only thing we could do is lots of stimulation and time. It wasn't what we wanted to hear of course but at least he didn't say she would never see again. He said it was a good sign that she is now able to see sometimes compare to 1 1/2 years ago when she couldn't see at all. Ari also had a GI appointment and everything went well, she hasn't gained any weight since her last visit but they aren't concerned because she is growing and is very healthy looking.

Ari hasn't had much PT or VT the last few months but has been going to OT 3X's a week and she has also been getting ST once a week. In OT Mr. Paul is really working her. He has been putting her on her hands and knees, she knows what to do with her legs she just can't get her arms working just yet but that will come I am sure. He wants to get her to where she can assist us in moving her which will be a big help cause she is getting big. Hopefully we will be getting back to PT this week, hasn't been able to go much between our schedule and her therapist has been having some health problems.
Thank you all for your continued prayers.

Bracelets for sell

We are selling some bracelets to try and raise some extra money to help pay for some of the alternative therapies Ari is doing that insurance doesn't pay for. To buy one please click on the picture in the side bar . We have also put Arianna's MRI reports and the recipe for her formula on there to view those just click the picture of the bracelets or there is a link to the website under the links section in the side bar. Thank you all for your continues support and prayers.