Tuesday, December 30, 2008

surgeon appt

We finally met the surgeon Dr. Jallo yesterday at John Hopkins. We had to wait forever! we had a 2 pm appt and were not finsished til maybe 4 pm. We only spent 5mins maybe 10 with the Dr. He seemed nice and I actually didnt have many questions. I feel like I know almost everything from researching and getting info from this group. He said I can call with any questions and he would be happy to see us the day before surgery if we wanted. I did ask him if we cannot manage to get jailynns hair buzzed before surery if he would shave her whole head, we want te hair to grow back even we dont want her to have a head full on one side and bald on another. I am just trying to think if I can come up with any additional questions but I'm drawing a blank.

I have an email with another memebers child's photos from after surgery, I was going to show them to my MIL, Gloria, I know she is scared and she was asking about the incision and scar, I told her I could show her. I know it will frighten her and maybe make her cry, but I think it willhelp a little to prepare her for what she's going to see. I thought I would be more prepared too. I have looked at these pics several months ago, but I looked at them alone last night and I cried just a little because now we are so close to jailynns surgery and its starting to seem so real. It is nice to see in the pics over several days her little girls smile showing through. Its hard to looka t the staples. My mother in law didnt get to see them last night but I will show her today. I wish I had a really current pic to show Gloria that the scar fades and looks much better later.

Tuesday, December 16, 2008

Jailynn appts.


today jailynn had motion lab analysis, i had no idea what that was, but i found out, its a research/treatment study that kennedy krieger is doing with a split plane treadmill, thats were they can set the treadmill to make each foot go a different pace. jason and I didn not know this was an optional appt, we thought we had to do it for pre-op, but when we got there they said it was optional to participate and get this we got $75! and each time she goes back she gets $, plus they dont even charge the insurance or anything! plus this will be helpful for jailynn relearning to walk after surgery and help with her left side weakness! and it benefits others with the research! jailynn was really crabby during it though cause we made her sit in the srtoller a while while i did paperwork and consents.

she calmed down in the waiting area with cartoons and we had to wait like an hour for her next appt, they were suppossed to get us in earlier but i dont know what happened. They second evaluation was neuropsychology and it was like a developmental evaluation. I loved the 2 doctors and jailynn loved them too. she did very well and was cute as a button while we were in there. The doctor was very helpful and explained some of what i can expect when she stays in kennedy krieger inpatient after surgery. she siad it is a team decision with the docs and parnets when she gets there and when she leaves, but she will probably only need 2 weeks there. so 4-12 days at the hospital and 2 weeks in rehab. she gave me her card incase i have any questions or just need to talk, how sweet!

Diana still has not gotten back to me about Jailynn's MRI, so yesterday I went ahead and called the MRI department myself, they called back and told Jason (I wasnt home) that Jailynn does havbe an appt for January 20th, 2009 at 10 am. jason didnt ask if it was under sedation or not though.

Jailynn had her OT evaluation for Pre-op today. I really liked this therapist too. She said when Jailynn is inpatient she will probably be her therapist. Jailynn was very cranky for this appointment. 9 am appts are not very good times for Jailynn.

Friday, December 5, 2008

waiting it out

Jailynn has continued to vomit 1 time a day or every other day usually during nap time.
Her neuro called me back last week and said to just wait it out for another week and then if we are still concerned to cut back to her old dose.
I am wondering why hasnt he said to have her levels checked? or cut the dose to a lower one instead of going back to the old dose and seizures maybe decrease the new dose a little but not as low as it was before. you kno wplay with the dose until we get it right. i really feel like he is not caring about the seizure control as much since her surgery is scheduled, but i dont want her to suffer until february, i want to do what we can while we wait for surgery,

we do see her neuro on dec 23rd, i pray i will have the coaurage to say to him what i really want to say and say it politely, sometimes i back down a little too much when i talk to him and this time i want to make him listen to me and not brush me off.

we are going for try number 2 tomorrow at 9 am for christmas pictures for jailynn. i pray she is not crabby and cooperates. we should not have a wait because we have the 1st appt of the morning. when shes not grouchy she takes great pics. she loves saying cheese.
She is doing very well with speech therapy, im so glad she has a speech therapist, im glad i fought for it.

also does anyone give gifts to the therapists? i feel like i want to, any ideas?

Wednesday, December 3, 2008

possible depakote problem???

Jailynn takes depakote sprinkles 125mg capsules
she was taking 3 a day 1 in am and 2 at pm... well dr K increase to4 a day, 2 am 2 pm a week ago maybe...

well jailynn has been super cranky at times when she normally isnt and more often, also for the past several days she has been vomiting once a day between breakfast and lunch time...

Im not sure if this could be fromt he depakote increase,maybe the extra 125 mg is too much for her lil tummy? anyone have any similar experience??
I have a call into her dr. event hough we see him dec 23rd. depakote can have some nasty side effects so i want to be sure

any input is helpful

right hemispherectomy scheduled for 2-5-09