med change

I called and left a message for Jailynns neurologist, he called back today and we are increasing her depakote she will now have 2 capsules twice a day instead of 1 in the am and 2 in the pm. hopefully this change will help for awhile.
her neuro made a comment after he told me to make the change, i cant rmemeber what he said exactlly word for word, but it was something along the lines of, "not that it will do much good anyway".... WHAT... this coming from the doc who said last week, that jailynns surgery is not an emergancy (its not really) and it can just wait til whenever...... he didnt need to say that at all.
he makes me so mad ughh

a video i made for jailynn a few months ago

my dad was on here looking for this video so here it is dad..

Make an on-line slide show at www.OneTrueMedia.com

February

Jailynn is now scheduled for hemispherectomy on Feb 5th 2009. i am not happy that its february but it is going to have to work out hopefully with lots of support from family and friends

angry

I do not even know if i can coherently explain what is going on.

diana pilas took unitl a week or so ago to schedule Jailynns surgery.
I have been waiting since September for her to do so. It went from
Jan 15th to Jan 22nd because Dr K was going to be away. Now yesterday
i talked to the surgeons office and set up all of jailynns final
appointments. Today the surgeons office called to say they needed to
move Jailynns surgery to Jan 15th because the surgeon had to leave
early on jan 22nd to be in philadelphia The surgeon said if Dr k.
would agree to have a different neurologist fill in for him that we
could do the surgery without Dr K. Well after talking to Diana and
Dr K. he absolutely will not allow anyone else to fill in for him
because jailynn is HIS patient! saying it like she belongs to him,
with no sympathy for our situation. If jailynn cannot have a january
surgery we have to wait til may/june. I really do not like how
arrogant he was and how he showed no sympathy at all. Dr jallos
secreary (surgeon) was so nice and sympathetic. and come to find out
the surgeon and dr K are in town the begining of January, but the
surgeons schedule is full, Maybe if diana had tried to schedule teh
surgery in septmeber like she was suppossed to Jailynn could maybe
have gotten in the beginning of january. I am so angry, upset,
pissed whatever. I have been bawling. I really dislike Dr K because
of his arrogance now to the point i kinda want a different neuro. I
feel in my heart that this surgery is SUPPOSSED to happen in january
and when i get these intense gut feelings i am normally right, like
when he wanted to cancel her VEEG. jailynn has been having seizures
lately and i really wanted the surgery soon to prevent us increasing
her depakote, cause it has some nasty risks. i am so distraught i
dont know what to do and i cannot calm down at all

we have a surgery date

Well I am very persistant and I called kennedy krieger again today
and spoke to Jean Smoot, she said Jailynns neuropsych eval will be
december 15th and 16th, she is just trying to arrange the times
becase jailynn doesnt need a Pt eval becasue she already goes there
for PT. So i called diana and left a message, diana called me back
and i was noyt abale to grab my cell quick enough so she left me a
message saying the surgery will be January 22nd but she didnt say a
time, i know it will be a long surgery. she said she left a message
for Dr Jallos secreary to call me to give me an appt for dec15th or
16th. Pooor Jailynn is going to be exhausted. thats alot for her in 2
days to go through. Then the following day my husband has surgery.
We see Dr K. on dec 23rd. So i need an MRI appt for her now, diana is
waiting to talk to dr k about that next week.

more seizures

Today when i came home from school at 4 pm Jason told me that Jailynn had a seizure today, then at dinner time she had two more. My poor lil girl. We will see what happens tomorrow and see if we are back in her old pattern. the depakote had been working pretty good, i just hate all the potential side effects.

The woman form Kennedy Krieger tried to return my call today but I was at school I called her back but she was gone so i left her a message telling her two dates that would work for us. So Jailynn's neuropsych evaluation will probably be dec. 15th and 16th. but i have to wait til she calls me back to confirm.
If you want something done..... u know the rest

spoke too soon

So of course I jinxed it. jailynn had 2 seizures today while she was finishing up playing with her OT therapist at home. I had just walked into the room when it happened. I think it kinda scared the OT, she is a very soft spoken lady.

Still getting the run around from the hospital about pre-surgery appointments and an actual scheduled surgery date. Now all the sudden Jailynn's regularneurologist will not be back in the country until January 20th. I go back to school February 2nd. They are not listening/understanding that I really need it to be as soon in Jaunary as possible so I can be with my daughter through th hard time in the hospital. No way i will be in school while she is in ICU/PICU! I just dont understand with Jauary so close why none of the appointments have actually been booked. everything is tentative and up in the air. this is a hospital where there is always a long wait to get any kind of appointment... so why havent they set up Jailynn's so we will have them?! VERY FRUSTRATING!

so far so good

Jailynn has been doing well. I think that speech therapy is really making a difference. jailynn is learninga little bit of sign and the words are coming with it.
She just started calling our dog Noel, NICE, i think this comes from me making her pet Noel while I said Nice, Nice, Nice, cause i want her not tp pet so hard. So now she calls our dog Riley by his name and Noel Nice instead of calling both dogs "iley" Today she put a good R in there and it sounded just like Riley.
She says mom alot too. and i think she really takes notice that I am not here during the day because when I am here she is always wanting me. It cute but sometimes when i really need to be doing something else she wills cream and scream for me. 2 year old tantrums...

We took her to Storyville at a local library today. It is for kids 5 and under and it is a whole little town with houses and stores and a special area for toddlers and one for babies and it incorporates age appropriate books and toys it is awesome. you could goodle it ( baltimore county public library storyville) and find it. I definately wanna take her back. and we got her a first library card and they gave her a little backpack, it looked so cute with her wearing it with her glasses on!
We have really been trying to make sure she wears the glasses as much as possible it is not an easy task!
So far no recent seizures either.