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.