revised neuro appt- blood work is in

Well I now need to revise Jordies blog d/t the dr office calling and letting me know that the blood work we did yesterday didnt come back good like normal, for some reason her platelet count is way down and her Depakote and Zonegran levels are very high. more then normal. so now we have repeat blood work in 4 weeks to check again before deciding on what to do.

Neurological appt

Well we went to see Dr Gupta this week and nothing new..... She gained 3 lbs which was good in two weeks. No new meds to help with seizure control. Nothing new to try or to do. Had blood work done to read levels and so we will see what they will come back with, usually isnt bad so no worries. The only new thing Dr Gupta is letting us do is...... we are now aloud to give ativan and klonopin within 24 hrs from each other. They used to tell us under no circumstance are we to give both in a 24 hr period. but now we are aloud. Other then that nothing new come back in 6 months. Jordyn has lost both front teeth and looks goofy but very cute. well very short update today but nothing new to say.

Dr .Parikh visit (metobolic specialist)

Well on Tues. March 22 we went to Cleveland Clinic to see Dr. Parikh, he hasnt seen Jordyn since he diagnosed her 4 years ago. He has had consults with Dr. Gupta but hasnt actually seen Jordie since then. Well No good news or no new news. He wants to run some tests nothing that will change anything with how she is treated or anything and it is only blood work for now so I said ok. He wants a X-Ray to see if there is any small fractures or breaks in bones, just due to her not moving or weight bearing or anything. He wants some DNA bloodtests done to see where at in the DNA is her disease located. He talked about wanting another Spinal Tap done but that I said only if/ when Dr. Gupta wants MRI and other stuff done. If they are going to put her to sleep I want them to do everything at once not having to make her sleep more then she needs to for testing. So he will talk to Dr. Gupta on that one. Then we went to the Lab- they couldnt get any blood!!!!! 1st time EVER they they couldnt get a vein. kindof makes ya wonder a little bit!! They tried twice and I quit and said she will be back in 2 weeks to see Gupta we will do it then. Although I think I will probable just go to Wooster Satillite they get it 1st time everytime! When we go back on the 6th of April we will do x-rays then also. Her appt tues was so late in the day and the one with Gupta is at 9am so I just figure we will do things then.
We also have lost 5 lbs. which didnt seem to concern him so we will see what Dr. Gupta has to say on that one. I know Parikh wants her to get hand braces and go back to eye dr. and to GI dr so I have a list of things to do to keep us busy!!!!! and go back to see him in a couple yrs.
Other then that no new treatments to try for the disease nothing else to try or do. So I am hopeing that Gupta has new treatments or something for the seizures. just hate feeling like we arent tring everything that we can to help stop, control them or anything.
Other then that since Jan. we have had some really BAD days with seizures and we have had some very happy and wiggily days so nothing has changed there!
The Princess has a birthday coming up next week!!!!!!! SHE WILL BE 7!!!!! WOW where has the last 7 years gone?? She is a big girl.
Well that is all for now and I will update after appt with Dr Gupta in a couple weeks.....

JORDYN'S PERSONAL ANGEL

Well on 1-11-11 @ 1 am, we had a very special man die, due to a car accident. He wore Jordyns blue bracelet everyday and he always was praying for her and making sure I was too. He would tell me everyday to sit and imagine her healed and believe it can happen. He was a wonderful man. I believe that God must of needed a wonderful man up in heaven to help be Jordyn's GUARDIAN ANGEL!! He left behind 3 children, many friends and family. He totally had all the faith in the world that Jordyn will be healed. You will be missed NATHAN!!!!! We love you so much and it all ended way to soon. Had a lot of things planned in your life and it was all cut short. Thank you for watching over Princess Jordyn, I know you will do your best, you believed so strongly in her being healed. I truely believe you are her GUARDIAN ANGEL! although we would rather have you here on earth with us. RIP Nathan. I love you!

The Princess

Well yet again it has been a year!!!!! Cant believe that. Well update on Miss Jordyn (the LIL PRINCESS) unfortunately there isn't much to update on her condition. We still are having seizures we are still cute as ever..... LOL
I passed my LPN Nursing so I now get to be one of Jordyns nurses which is great! I am making up for the last year that I missed being at school.
We go to see Dr. Gupta in March and then we get to go to Cleveland again in April to see Dr. Parikh- who is the specialist who diagnosed the princess 4 years ago!!!!!!! Gotta love that man!!! and owe him ALOT for giving me some answers! Or at least can put a name with the issues we have.
Update on the seizures, well we can have a day or 2 that are pretty good then have really rough ones. Alot of the seizures (tonight its all of them) are screaming afterwards like the most awful, loud scream that stops as fast as it starts, or they are gagging, choking, and sometime projectile vomiting. She could be in the movies between the screaming and the vomit.
Jordyn has 3 good nurses, Tammy, Kris, and Jennifer and then me.
She is still getting physical therapy here at home and occupational also. She has a stander now and had to upgrade to a bigger tumble chair she got way to tall for the last one. she also has another chair with a tray. They are looking into getting a stroller along with her wheelchair..... love the wheelchair but sometime its harder to get out and get ready then the amount of time she is in it in the store.
Well I am going to update more often, and going to get off here and watch the princess. just had some ativan so hope the seizures stop for the night so she can sleep. That is what she needs!!