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.....