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.

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.