Tuesday, December 30, 2008

surgeon appt

We finally met the surgeon Dr. Jallo yesterday at John Hopkins. We had to wait forever! we had a 2 pm appt and were not finsished til maybe 4 pm. We only spent 5mins maybe 10 with the Dr. He seemed nice and I actually didnt have many questions. I feel like I know almost everything from researching and getting info from this group. He said I can call with any questions and he would be happy to see us the day before surgery if we wanted. I did ask him if we cannot manage to get jailynns hair buzzed before surery if he would shave her whole head, we want te hair to grow back even we dont want her to have a head full on one side and bald on another. I am just trying to think if I can come up with any additional questions but I'm drawing a blank.

I have an email with another memebers child's photos from after surgery, I was going to show them to my MIL, Gloria, I know she is scared and she was asking about the incision and scar, I told her I could show her. I know it will frighten her and maybe make her cry, but I think it willhelp a little to prepare her for what she's going to see. I thought I would be more prepared too. I have looked at these pics several months ago, but I looked at them alone last night and I cried just a little because now we are so close to jailynns surgery and its starting to seem so real. It is nice to see in the pics over several days her little girls smile showing through. Its hard to looka t the staples. My mother in law didnt get to see them last night but I will show her today. I wish I had a really current pic to show Gloria that the scar fades and looks much better later.

Tuesday, December 16, 2008

Jailynn appts.


today jailynn had motion lab analysis, i had no idea what that was, but i found out, its a research/treatment study that kennedy krieger is doing with a split plane treadmill, thats were they can set the treadmill to make each foot go a different pace. jason and I didn not know this was an optional appt, we thought we had to do it for pre-op, but when we got there they said it was optional to participate and get this we got $75! and each time she goes back she gets $, plus they dont even charge the insurance or anything! plus this will be helpful for jailynn relearning to walk after surgery and help with her left side weakness! and it benefits others with the research! jailynn was really crabby during it though cause we made her sit in the srtoller a while while i did paperwork and consents.

she calmed down in the waiting area with cartoons and we had to wait like an hour for her next appt, they were suppossed to get us in earlier but i dont know what happened. They second evaluation was neuropsychology and it was like a developmental evaluation. I loved the 2 doctors and jailynn loved them too. she did very well and was cute as a button while we were in there. The doctor was very helpful and explained some of what i can expect when she stays in kennedy krieger inpatient after surgery. she siad it is a team decision with the docs and parnets when she gets there and when she leaves, but she will probably only need 2 weeks there. so 4-12 days at the hospital and 2 weeks in rehab. she gave me her card incase i have any questions or just need to talk, how sweet!

Diana still has not gotten back to me about Jailynn's MRI, so yesterday I went ahead and called the MRI department myself, they called back and told Jason (I wasnt home) that Jailynn does havbe an appt for January 20th, 2009 at 10 am. jason didnt ask if it was under sedation or not though.

Jailynn had her OT evaluation for Pre-op today. I really liked this therapist too. She said when Jailynn is inpatient she will probably be her therapist. Jailynn was very cranky for this appointment. 9 am appts are not very good times for Jailynn.

Friday, December 5, 2008

waiting it out

Jailynn has continued to vomit 1 time a day or every other day usually during nap time.
Her neuro called me back last week and said to just wait it out for another week and then if we are still concerned to cut back to her old dose.
I am wondering why hasnt he said to have her levels checked? or cut the dose to a lower one instead of going back to the old dose and seizures maybe decrease the new dose a little but not as low as it was before. you kno wplay with the dose until we get it right. i really feel like he is not caring about the seizure control as much since her surgery is scheduled, but i dont want her to suffer until february, i want to do what we can while we wait for surgery,

we do see her neuro on dec 23rd, i pray i will have the coaurage to say to him what i really want to say and say it politely, sometimes i back down a little too much when i talk to him and this time i want to make him listen to me and not brush me off.

we are going for try number 2 tomorrow at 9 am for christmas pictures for jailynn. i pray she is not crabby and cooperates. we should not have a wait because we have the 1st appt of the morning. when shes not grouchy she takes great pics. she loves saying cheese.
She is doing very well with speech therapy, im so glad she has a speech therapist, im glad i fought for it.

also does anyone give gifts to the therapists? i feel like i want to, any ideas?

Wednesday, December 3, 2008

possible depakote problem???

Jailynn takes depakote sprinkles 125mg capsules
she was taking 3 a day 1 in am and 2 at pm... well dr K increase to4 a day, 2 am 2 pm a week ago maybe...

well jailynn has been super cranky at times when she normally isnt and more often, also for the past several days she has been vomiting once a day between breakfast and lunch time...

Im not sure if this could be fromt he depakote increase,maybe the extra 125 mg is too much for her lil tummy? anyone have any similar experience??
I have a call into her dr. event hough we see him dec 23rd. depakote can have some nasty side effects so i want to be sure

any input is helpful

right hemispherectomy scheduled for 2-5-09

Tuesday, November 25, 2008

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

Monday, November 24, 2008

Thursday, November 20, 2008


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

Wednesday, November 19, 2008


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

Friday, November 14, 2008

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.

Wednesday, November 12, 2008

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

Tuesday, November 11, 2008

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!

Saturday, November 8, 2008

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.

Tuesday, October 28, 2008

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.

Sunday, October 19, 2008

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.

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


Friday, August 22, 2008

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!

Sunday, August 17, 2008

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.

Saturday, August 16, 2008

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

Thursday, August 14, 2008


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.

Monday, August 11, 2008

seizures and med changes

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


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.

Wednesday, August 6, 2008

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...

Tuesday, July 29, 2008

V-EEG scheduled

I received a call from John Hopkins today, jailynn is scheduled fro her
Video EEg December 15-22nd. That is when I will be on break from colleg
and will be able to be with her the whole week. Her seizures are not
frequent enough to need to do it asap. her docotr said that is fine.
she hasnt had any seizures that we know of in a week i think, i dont
have my "calender" in front of me. Its gonna break my heart to have to
watch her seize, to make it happen on purpose. I hope they can get
enough info in less than one week. it is so close to christmas too. My
husband also is trying to get his shoulder suregry around that time so
i will be available to help him take care of the Jailynn while he

Saturday, July 26, 2008

Milestone reached!!!


Jailynn is now 27 months old. She just started this wednesday walking independantly! Before we would have to hold her left hand for her to walk. Now she can do it on her own! We are so excited and proud. Jailynn is proud of herself as well. you can see it in her face. Now she just needs to learn how to pull up to stand/ stand up on her own. She is still pretty wobbly so we have to stay close to her when she is walking. She is getting better at turning around too. I was at school when she started at night and work during the day so I got to see it myslef on friday. I had to go sow her off to the neighbors.
Here is a video of her walking, copy and pste this address to see it:


Meet Jailynn

Jailynn is now 2 years old.
She was born May 31st, 2006 on my due date. I had a completely uncomplicated pregnancy and labor. She was 7 pounds and 7 ounces and 21 inches long. Shortly after birth she began to develop 3 hemangiomas, some peopl ecall them strawberries. 2 on her head and the largest on on the left side of her belly. At her 2 month old check up her pediatrician noticed Jailynn wasnt focusing light in her eyes correctly. She sent us to an eye doctor, that just wanted to do surgery for a weak eye muscle. We didnt like her but she did reccomend we see a neurologist "just in case" because she said jailynns eyes were not sspaced properly. The neurologist thought she was fine, cause 2 months olds dont do much anyway but she wasnt smiling at anyone on purpose. He sent us to another eye doctor and to have a CT scanjust in case. Well we went to the eye doctor at Wilmer at John Hopkins and She said Jailynn had a pretty bad astigmatism in both eyes. At 9 months old Jailynn got glasses. The neurologist gave me devastating news over the phone about the Ct, I ended up getting the report faxed to my job and googling all the medical words. We needed an MRI to get a better Diagnosis. The Ct said she had Complete Agenesis of the corpus callosum and probable lissencephaly. The night before tehe MRI Jailynn had her first seizure.Well the MRI ruled out lissencephaly (which is way worse of a DX) but it confirmed the ACC and right dysplasia. She had an EEG at 3 months old and was put on Tegretol ( the generic though)

Jailynn would do good on the medicine for 2-3 weeks and then we would need to increase. She reached her max dose of 10 cc twice a day and April 2008 we added Keppra. She is not at her max dose 4 cc twice a day along with the tegretol.

I have talked to her neurologist and he feels she will benefit from a right hemispherectomy. I was so upset when he first metioned it last year. Now it is looking like it may be the right choice. Jailynn should be having a Video EEG in December, when I am on break from college. She may end up having the hemi surgery done May 2009.

***I copied this from another diary I have******* someone asked what was on jailynns head but i didnt have access to their dairy so i thought i would post some info. jailynn started developing hemangioamas after she was born. they started as dots and grew big. she has 3 2 on her forehead and a big one on her belly. 1 of the ones on her forehead is growing under the skin partially and thats why it looks like a purple bump. i did a search online and got this info to share I also put info about her brain disorder ACC A hemangioma is a type of birthmark. “Hemangio” means blood vessel and “oma” means tumor. Hemangiomas look like a thick mass of blood vessels above the skin and are usually harmless. Who gets it? Just 1% of newborns are born with hemangiomas. However, most are not present at birth. Premature babies tend to have a higher incidence of hemangiomas, approaching 25%. Hemangiomas are not as common in black children. What causes it? Researchers do not know what causes hemangiomas. What are the symptoms? Most hemangiomas aren’t obvious at birth. However, they grow rapidly shortly after birth. After this burst of growth, they often become smaller and lighter in color, called “involution,” over a period of years. Some hemangiomas will eventually disappear completely. Some rare hamangiomas, called “cavernous hamangiomas” can become sore and bleed. In severe cases, these can cause uncontrollable bleeding, delayed growth, or impairment of vital functions. How is it diagnosed? Hemangiomas are diagnosed according to their appearance and growth pattern. What is the treatment? In most cases, hemangiomas require no treatment. However, your doctor may recommend surgery for growths that gradually disappear, but leave behind scarring. Cavernous hamangiomas may require treatment with steroid medications or embolization, where the hemangioma is injected with a material that blocks the flow of blood into the growth. These types of hemangiomas may also need to be surgically removed. The drug interferon may show promise in treating more serious types of hemangiomas.

Agenesis of the Corpus Callosum...put in easy to understand words..the connections between the two hemispheres of the brain are either missing completely(C-ACC), or are partially missing(P-ACC).Some have argued that this is a natural split brain with each side working independently however, there are some ACCKIDS who have shown that both sides of the brain do communicate. The brain is a very redundant organ and CAN compensate for areas that are affected. No two children that have ACC present the same, which makes research on this condition very difficult, and almost impossible to predict the outcome of cognitive abilities. Many ACCKIDS do benefit from physical therapy as well as speech therapy, occupational and vision therapies. ACCKIDS can run the gamut of related disorders such as, Septo Optic Dysplasia/ONH, Hydrocephalaus,Seizures, Spina Bifida, Feeding issues, CP,ADD/ADHD, Sensory Integration Dysfunction etc. Some are affected genetically although it has been difficult to prove that ACC is a genetic disorder.