Friday, September 26, 2008

tentative date

so Diana called today, we discussed a game plan. Tentatively Jailynn may have surgery January 15, 2009. She has to check the neurosurgeon's schedule and neurologist's schedule.

jailynn will most likelky see the surgeon and have a sedated MRI in december and January she will have a developmental evaluation/neuropsychologocal testing.

jailynn has a cold, her nose is all runny and she just had a seizure 5 mins ago....

Tuesday, September 23, 2008

more seizures

Jailynn had 2 complex partial seizures before I went to school this morning. She normally goes 2-3 weeks seizure free! I guess cause she's not on keppra. If she has more I might be calling Dr K this week. My guess is he will go up on the depakote dose or want to go back to sprinkles. I already called Diana and left a message that I wanted to start scheduling her pre surgical appointments like the surgeon appt and mri. I hope she calls soon I am very impatient.

Wednesday, September 17, 2008

Surgery here we come

Dr K. called today and told my hubby Jay that he would call at 5 pm cause I wasnt home when he called at 10:30 am. At 5 pm today i was dying for my phone call from Jailnns doctor. by 6 pm i was angry and 7 pm i was livid. I called my best friend Summer to complain then i called my friend amanda hoping complaining to her would make the call come. she tried to calm me but finally i got a beep and it was him!

He said the discussion on Jailynn was short at the meeting. They saw 6 very clear definate ride sided seizures and a 7th fuzzy one but they know it wasnt from the left side. He said they all agreed that a HEMISPHERECTOMY was the way to go. jason and I agree and Dr K. said it would be best to just start sceduling it now, and we could always change it if we needed. Jailynn will need a MRI, neurosurgeon appt and maybe a neuropsych evaluation and bloodwork. He said Diana Pillas will set all this up. She is away til Tuesday, he said I should wait for her to call me and call her if i havent heard from her by the end of next week. I talked to Jasons brother and mom, his brother his very aprehensive and doesnt understand, (hes 21) i just think hes scared. Jays mom didnt say much at all. I am nervous but happy to have an answer.

So this begins our journey to surgery. Dr K. said we can probably get Dec2008/Jan 2009, probably middle of Jan, which could work casue school doesnt start til feb. 2nd

Saturday, September 13, 2008

veeg is over

I kept trying to update my care page from my black berry but it would not save!

So to sum it up. Jailynn is a hemispherectomy surgery candiate. The nerologists will discuss this at their weekly meeting on tuesday and Jailynns neurologist will call me with info about what they thought as a group. then we may be moing ahead towards surgery.

Jailynn had a rough night last night she had 4-6 seizures and towards night time she started vomitting beofre and after seizures. They ended up giving diastat twice and putting her back on her new meds. she still had seizures afterwards. she had 2-3 today, shes been having complex partial and tonic clonic ones. it started getting pretty scary. im glad to be home now and hopefully over the next few days she wil be feeling alright.

shes got tons of glue and gunk in her hair from the eeg wires and glue, i have washed her hair twice. ANy pointers on getting that out????

i am now very anxious for the next steps, i know if we go thru the surgery path she wil need a nerosurgeon appt, maybe a new mri, blood work and a neuropysch eval.

Monday, September 8, 2008

V day tomorrow

tomorrow is V day VEEG day. very nevous! We are going to arrive at 8 am. Hopefully she can have enough seizures to get the info they need. i hope it doesnt take the whole week. Jason will be with Jailynn during the day and when I am finished at school I will get there and have someone bring hime home. his mom will drop him off in the mornings. his first ride home is Jane from the hemispherectomy foundation. i cannot wait to meet her she seems great! wish us luck and keep Jialynn in your prayers please