First we had to get my two younger kiddos to my moms, transfer car seats, make sure my "baby" had meds, because OF COURSE :( he came down with a viral infection YESTERDAY. I feel so bad about leaving him there but he started his meds and that would be a better place for him to be rather than cooped up in a hospital.
So Nauni, my mom, is watching the younger two and off we go to the hospital.
|1. His neurologist, Dr. Marks 2. Dr.Acosta - partner 3. Kathy- Nurse who applied the EEG cords.|
All are awesome! His neurosurgeon is not pictured for some reason. Guess he's shy lol
We arrived at the hospital about 8:30 am for our 9:00 am appointment.
We get checked in, up to the 4th floor and off to our room. As we are making the turns down the hall my emotions and memories started rushing to me.....
This was actually in 06, i guess with all the stress and new year I got confused.
My son, Desmond, was diagnosed with Epilepsy at 20 months of age, December 29th, 2006 to be exact. I noticed his first seizure when he was 2 weeks old. Being a first time, young mom apparently I "knew nothing".
A little bit of insight on our history.
I was in a car wreck when I was 7, in therapy, mri's and lab work out the wazoo. Shortly after the wreck I stepped on something, walking barefoot outside and cut my foot open. It wasn't horrible but it wasn't simple either. So long story short, I had to get stitches, bawled and threw a fit like a drama queen (especially when I saw rocks falling out of my foot, YES REALLY). Due to the car wreck and hitting my head, swelling and then the trauma of my barefoot dramas I began having seizures. That's a whole other story but I dealt with seizures until I was in 5th grade. My grandfather has epilepsy, my kids dad has epilepsy which he outgrew.. So been there done that.
I knew what I was seeing. So after all the time of no answers and being ignored, he had a grand maul seizure (my daughter was 3 months old that day, and he was almost 20 months- yes close in age lol)
So after a 4 day stay in the hospital answers were given which led to more unanswered questions, new journeys, new discoveries and new diagnostics.
The room we are in now, is just 3 doors down from the room he was hospitalized in and having grand maul seizures every 4 hours for 3 days.. I knew we would be in the same area, but the hardest part was walking in seeing them pad up the bed for the possibility of him seizing.
He hasn't had a grand maul in over a year, woohoooo.
But he has had increased petit mals, been diagnosed with Chiari Malformation Type I and had other symptoms and side effects that drew up to this EEG and video study.
So here we are getting EEG done.
Just got the wires glued on. Breathing test, fun and games I say ;)
It's a semi-routine study but a much needed study because of increased side effects etc.
Luckily they have a play room, TV and wifi (obviously :D ) Of course we went down to the playroom in the last 20 minutes so he didn't get to play long, and we have a room that does NOT have WII in it. So its just a bunch of TV watching and sitting in the bed. We did get to bring a family game pack back and we played dominoes, chess and then lined the dominoes for a cool "Domino Effect". :)
|Daddy and Desmond|
My mom and I have been texting back and forth doing updates and this is what we exchanged.
|Jordan, fun frames afroman|
So I responded with
|Desmond, fun frames cell phone picture|
Then she sent a picture of Taylor
|Taylor, roses fun frame|
Then we took a walk and rode the elevator to get some chips
Here we are at 11 pm
We just noticed he has taken full advantage of the hospital meals and snacks by eating just about every hour.lol He has had apple juice all day, something he rarely drinks at home lol. Graham crackers, jello gatorade and his meals were all good too.. It seems thought he might be coming down with the "cold" like symptoms my other son has :( He's eating but not as much...
Right now we are in the "stay awake" zone. Hoping to get him worn out and unfortunately cause some seizure activity..
They just came in to do the testing again. Pin wheel and strobe lights again...
He's just starting to get tired so I'm thinking it will be after midnight before I can allow him to go to sleep.
We don't watch much TV at home and I am so tired of hearing this TV!!! But if it keeps him up I guess we gotta do what we gotta do. lol
We are gonna go walk the stairs to wear him out and then
Mommy is going to take a nap so I can make it through our long night.. So Desmond says Bye-Bye!! :D
** I was not paid in cash form for this post. I was under no obligation to make a post of any sort.**