we moved her VEEG date sooner

SO last week I had to speak to a different neuro because Jailynns (Dr Kossoff) was on vacation. SO this week i was on vacation but busy making calls too. When I caught up with dr kossoff he said if jailynn is doing okay in 2-3 weeks we could try to wean her from tegretol. He asked me if i ever scheduled her VEEG and i told him for December. He sounded confused and not pleased ( i could just tell) and he said we could just try to make due til december. well after much discussion betweeen my huband Jason and I we decided we wanted it sooner. I hate waiting and I want answers. I called the dr back and he said okay that it was up to me, I called diana pilas and Jerry in the EMU and rescheduled it sooner to SEPTEMBER 9th! it is sooo soon that I am kinda scared! I figure it is best sooner though because college classes will be starting monday aug. 25th and sept 9th is not too far away so I can just do my best to not get bcked up on school work.
Jason will stay with jailynn during the day and I will come after school and stay the night. They have dial up internet access so it will be slow but I can use the computer and study hopefully when she goes to sleep. I am trying to contact some friends and family members to arrange "relief" periods for Jason during the day. My husband is blind so he will pretty much be stuck in the room with jailynn, He says he will just pack a bunch of food. I am hoping his mom will agree to drop him off at the hospital in the mornings so I can leave and go to school and hopefully his mom or a family vistor can bring him home each night, since someone has to be there at all times. We only live 15 mins from Hopkins thank goodness.

I told them if she is still a surgery canidate after the VEEg that I was hoping to get surgery Decamber/ January while I am on break from college. I cannot and will not sit in class while my baby is in surgery or the ICU. So far it is pretty much a definate No from John Hopkins for december but I am praying they can do Jaunuary.

I want to to it sooner, so that way she can still have time left with Infant and toddlers therapy and she is not going through surgery while i am fighting with the public school system about her school/therapy situation when she turns 3. I figure the sooner before school age the better.

and every parent i have talked to says they wish they would have done surgery sooner.

thanks for letting me ramble... I pray god gives me strength through all of this!
Holly

Our lunch date

So we had our lunch date with Sara and her daughter Dagny and their faimly. It went so well. They were so nice and open about talking about everything. I asked everything I could think to ask. We did sooo much talking. Her daughter is so sweet and beautiful. I made me feel really good to discuss the hemispherctomy surgery with them. I know more what to expect and feel better about my decision. She is going to send me an article she found and some pics after surgery.

excited about tomorrows meeting!

Today Jailynn was pretty good in the afternoon but at dinner time she got real fussy wouldnt eat much or drink her milk. the only thing calming her is walking around the house with daddy. Im not sure whats bothering her. maybe her teeth?
For some reason all the sudden she screams when we put her in her swing outside. she has loved it. she will walk to it pat the seat and say up. but the minute you buckle her in she screams....
its almost her bedtime.

Tomorrow we are meeting a mom Sara and her daughter who has had a hemispherectomy. She is younger than jailynn I think. WE are having lunch with them and their family at the Harbor. I am so excited because this mom said her daughter did not lose function in the left side of her body when she had the right half of the brain removed. most kids become partially paralyzed (hemiplegia). This is inspiring to me. I am hoping Jailynn would have the same experience, since Jailynns brain has been damaged since birth I am hoping her right side as already taken over the left side of the body!

I cant wait til tomorrow

Depakote

So Jailynn is now on depakote. Today is the last day that she is taking the diazapam(instead of ativan). The depakote is in a capsule that we have to opena nd sprinkle in applesauce. 1/2 a capsule this week twice a day and next week a whole capsule twice a day. I am calling her neurologist on monday to see if he is going to take her off one of her other meds or leave her on 3. I wonder with the depakote how long her honeymoon phase will last. I am really wanting to pursue surgery now. I want her to be med and seizure free, so they meds will not slow down her learning and make her so tired. I am just wondering how much a toll the surgery will take on her. each child is so different. Talking to other parents helps but you still never know how your child and yourself will handle it. I am pretty calm now but what about surgery day and after that!? I think I will fall apart! When I think about it I imagine my little girl in a bed with her head shaved and sticthed up and it breaks my heart. She is too young to understand it and why it is happening to her. I think the rehab will be hard on her too. She is not mentally old enough to explain this too her.

Its so hard because no one can tell us wjhat the right thing is and no one can make this decision for us.

So far on the depakote and diazapam I have not seen any seizures. She has also been in a better mood.

seizures and med changes

8-10-08
when jailynn gets a new medicine dose and lasts 2-3 weeks with no
seizures her doctor calls that her honeymoon phase. Well with
Jailynns last dose change last month she went over 19 days no seizure
until yesterday. She had a seizure yesterday when we were at the Phi
delta kappa picnic. Then today she had 4 seizures. By bedtime she was
soooo tired and miserable. I definately need to call her neurologist
tomorrow and talk about changing or adding a medicine. Poor jailynn.
I wish we could do her Video EEG sooner then she could have her
surgery in december. Summer is better though cause i will have a
longer time with no school and she will probably be in rehab for
awhile after the surgery.
We were suppossed to meet a family from a support group i joined
today but the little girl has been sick, so we are meeting them next
sunday.


8-11-08

CRANKY!!!that has been jailynn so far today. I woke up at 6:57 am to
her crying and grabbed my slippers and went in her room. she was
laying in her crib at the end and when i turned on the ligth she
starting bawling! She cried while I changed her and on and off
through breakfast. This makes me pretty sure she had a seizure at
least one this morning. She always ALWAYS is happy when she wakes up
and calls out "UP UP" or "DADDY DADDY DADDY". I had to walk around
with her to calm her down, she loves walking. She had her
physical/occupational evealuation this morning at 9 am, but the place
screwed up and only scheduled Physcial therapy. When we got there i
had to keep strolling her in the stroller ort she would cry. The when
we went in with the therapist jailynn screamed and cried the whole
time unless i let her walk and it was a small space s o i had to hold
her hand and the therapist was trying to ask me questions.
I scheduled for her to go on monday aug 25th but that conflicts with
her OT that comes to the house, so i have to talk to her OT today
when she comes. It also is awful close to my appointment with my
medical doctor. I really need to see him too. but i probably have to
cancel my appt. I called to check for cancellations but they didnt
have any.

I called Jailynns neurologist office to try to get him to call me to
talk about her seizures the past 3 days and maybe a new medicine, but
he is away all week on vacation. The secretary is so rude too. But
there is a doctor covering for him but she is not in the office right
now. I left a message and she is suppossed to cal me back. Im sure it
won't be til the end of the day (after 6) thats how it normally is
with them.


8-11-08 night time
So another neurologist called me back, actually between 12 noon and 1:30 but i missed the call on my cell phone, i d not know why he didnt call my home number. I left the home number. I called him back and left a meassage and finally he called back around 3pm. Dr Hartman said to use atavan (spelling) for 3 days, but the pharmacy didnt have it so he called in valium solution/ diazapam instead. He sent use for blood tests to check jailynns liver and said when he gets the results he will call in Depakote. He said that when Dr. kossoff ( her regular neurologist) comes back from vacation that he could choose to wean jailynn off of one of her other meds. These meds are gonna make her so sleepy. I have choosen to give the new med when we get it and the diazapam rigth before nap and right before bed, so that it will not affect the times she needs to be awake hopefully.
Hopefully this all helps her alot. Getting bloodwork was not fun. I got there 30 mins before they closed and we were the last ones out of the lab, i don't know why the made us wait so long, because there were others that got there after us.

Great Strides

Jailynn has been making great progress with walking! She is still very wobbly. She kin reminds of a crab and a duck at the same time :-) She is getting very good at turning and starting and stopping. She still truns mostly to the rigth (her good side) but sometimes she will go left. Her physical therapist is really working hard on pulling up to stand and she is starting to get it. She just cant do it all on her own yet. It will open up the world to her. We better bay proof somemore soon! She is showing interest in pulling up in her crb when i go in the morning to get her, so I raised the rails.She has started speech therapy but has only had 2 visits, he therapist cancelled yesterday. I was really bummed cause I wanted to meet her this time. Jailynn has started saying "up" on her own, but it means many things not just up.
No seizures that I know of lately. Her dad and I have really noticed the change in her since her keppra was increased. she gets so tired within a half hour of getting it and cranky!!! I don't like this. I am also afriad anyday now her "honeymoon" on this dose will end...