Hello all, Hope you are all doing good . We are doing good , we have been busy the last couple of months we moved back to Sebring and Ari has had a couple of appointments. 

First off Ari had her appointment with spinal surgeon a few weeks ago and unfortunately her spine is at 58% curvature  but she is to young to have the corrective surgery he said she needs to go thru puberty before  putting the rods in so they made her a new back brace with the hopes that will keep her spine from getting to much worse, but  she doesn't tolerate more than 2 hours and He wants her on a muscle relaxer again she was previously on baclofen which did lesson her curve but it caused her to drool so much that she was choking on it and we stopped giving it to her after and it physically didn't look like it was helping anything..So we have opted to try a more natural approach and started her on CBD oil its called Haleigh's Hope or HH for short. It has been 2 weeks this past Saturday that she has been on it and I have noticed small changes on her muscle tone so I am praying that this will be our answer for her. The suggestions is to start small dose for 3 weeks and then increase the dose every 3 weeks until we get her seizure free or whatever the results you are needing are . There are many parents who have successfully gotten results with seizures using HH but we are hoping for muscle spacitity relief .

the picture on left is current and the one on right was around 6-8 months ago

We also went to the neurologist this week . He gave us a prescription for Zanaflex for her muscle (I haven't filled it quite yet I wanna give HH a few more weeks) and suggested we look at  placing a VNS (vagus nerve stimulation) to try and control her seizures it is a small generator about the size of a watch and its placed under the skin in the left chest ares and it has a thin wire that connects to the left vagus nerve under the skin in the neck  that sends pules to the nerve to stop seizures.I don't think we will be going that route unless her seizures get worse.  Her Dr gave me a name of another pediatric Neurologist that is certified to prescribe CBD which is now FINALLY available her in Fl. They have just opened one dispensing clinic in the state but i'm sure the list is long for getting it but if Ari needs more THC in her CBD oil we finally hopefully  have that option .

On August 19th we go back to Shriner's to see a Dr for her hip and discuss treatment. Her right hip is out and causes her pain. She keeps her leg bent all day and night and she has kept it this way so long i'm not sure she can even straighten it if she wanted to. I was hoping that her tone would change (like it always has) and her hip would go back once the tone was moved like it did with the left hip but that hasen't happened and now she is in pain I know we need to go ahead with the surgery.

This is how she keeps her leg all the time

Arianna also had a birthday on June 25th she turned 11 I can't believe she is that old already the time is just flying by so fast . We just had cake and a few presents with us nothing big. I think I have covered everything I will update again after our appointment with the Dr for her hip. Thank you all for continuing to check in on our princess. 

9 years!!!

     Wow it has been 9 years ago today our lives changed forever...All the dreams we had for her like starting school, going to her first dance and senior prom and having a normal fulfilled life were replaced with doctors , specialists, and therapies.. We are so grateful for everyday that we have with her.We have learned so much over the years and still have much to learn.

Couple days after accident

Christmas 2015

     The years of immobility has taken a toll on her body .. she has developed scoliosis which causes her a lot of pain and has gotten much worse over the last year. We have an appointment in May with the spinal surgeon to see if it is time for the surgery which is a scary to just think about we have had to reschedule the last 2 appointments due to her being sick please pray that she stays healthy so she doesn't have to miss it again. Her right hip is also out of place which causes her to keep her leg bent. The Dr wants to do surgeries which includes hamstring lengthening we have decided to hold off on it for now .

Ari in rehab hospital after accident

     Arianna has grown so much she is almost as tall as I am now. She is so alert these days, she just listens and watches everything going on around her. She is going to school 2 times a week for her therapies and we now have a therapist that comes to the house once a week to work with her. She has not had much experience working with kids like Ari but she is trying and is reaching out to others for ideas and input as to what will help Ari.

          I will post an update after her appointment in May . Thank you for continuing to pray for our princess..
     

  Wow I can not believe its been so long since i did an update. I am sorry,  for a while it was so hard to sit here and try to think of something new to say about Arianna's progress and before I knew it it is 2015 time really does fly by so fast.

  Arianna is doing good, she has gotten so big she is also a big sister and also an Aunt now our oldest had a baby girl the end of March this year. Not to much has changed since the last update. She still has seizures daily but she is very alert she is on Lamictal for them it has decreased how many she has but she still has more than a dozen a day . She now has a back brace  (which she does not tolerate for very long) because her spine is curved  and scoliosis is starting the spinal Dr requested her to be on baclofen for her muscle tone hoping that it will help , her right hip is out of socket due to her muscle tone pulling it out so now the doctors want to do surgeries but we have opted not to at this point I think the baclofen is helping a little some.  She goes to school for therapy 2 times a week for an hour and she gets PT, OT, and vision therapy there, she has started music therapy which she seems to really like. The therapist has these plastic tubes that are different colors and sizes that are put together to make a xylophone that is her favorite to play. She cant hit them by her self but she lets me move her arm to hit them. All her therapists are working on getting her to make choice by looking at something and blinking her eyes 2 times for the one she wants which she does most of the time.

 Over all she is doing great no major health issues, nothing more than the occasional cold. We have been very blessed with her health and her not having to be hospitalized for anything. Well I think that just about catches you up on how she has been. I will try and do post every few months if nothing else with pictures.
 

                                                      Arianna with baby sister Makayla

                                                     
                                                   
                                                    Arianna meeting baby sister Makayla

                                               
                                                           Arianna and Makayla

                                                           
                                                       Halloween  Princess

                                                 
                                                         Ari at therapy in 2013

                                                       Another one at therapy

Ari meeting her niece Kailani

Arianna in her back brace at school this year

We took Arianna back to her neurologist last week and they have taken her completely off the Keppra and she is completely back to her self. She didn’t cry at all at therapy and she put an effort in . She is now taking Lamictal for her seizures she has been on it for a little over a week  now and has had no signs of any side effects. It will take us about 2 months to get her up to the dosage that she needs so I am not expecting to see any improvements until then. We go back to the neurologist on August 18 and they hoping to be able to  start weaning her off of the tripletal then.

The video is Ari eating her birthday cake.

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.