October be over

jailynns daddy Jason was in the Veteran's Hospital Thursday- Monday because of an abcess and he needed surgery. He's been in alot of pain and Jailynn and I missed him so much. We are very glad he is home. Jason is feeling better and better with each dressing change the pain is getting less.

When he got Jailynn from her room after her nap she possibly had a seizure and threw up. She has threw up 2 more times. Now she is laying on daddys lap trying to fall asleep and intermitently crying.


I talked to Jailynns Infant and toddler program coordinator and she scheduled a home visit and after that she will schedule a phone confrence call with the school system and then they will schedule a meeting to do an IEP for Jailynn(probably march).

I also called Diana( the coordinator or the hemispherectomy surgery) and she called back, she is trying to set up Jailynn's Neuropsych evaluation for surgery pre-op for december 15th and 16th ( i will not be in college then because of winter break). So she should be calling me back. She has not found out if January 15th will be okay for surgery because the surgeon is on vacation right now.

better after a few weeks of being sick

Jailynn has been sick most of october. Started out with a cold type thing going through our house, then she had green mucus from her eyes turned out that she had an ear infection. Then her dad and I had a stomach bug or something and she got it. We ended up in the ER with her because of dehydration. She couldn't keep even a sip of liquid down.
After a few rough days things are finally looking up.
Jailynn seems much much better now. No more vomitting. She has been drinking less for several weeks, she's getting a little better now. I think its a control thing. She wants to assert her independence and drink when SHE wants to. She is gettimg stronger walking on her own and takinglonger steps more (vs duck waddling steps).
She has an evaluation for OT at kennedy kreiger tuesday. So she will get it once a week there and once a week at home.
We received our. First EOB from insurance and it looks like each therapy @ kennedy krieger will cost us $50!until we meet our max out of pocket of $3,000.

Still no news about set dates for surgery appts.

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....

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.

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

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.

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

Holly