Together Again

Brian told Jeff that he missed Kate the night she was away.  I think this picture let's us know just how much. :-)

Beautiful Kate

Hello to all!  First of all I would like to thank everyone for your prayers and thoughts and kind words and offers to help, it means more than words can say.  We are home now after only 24 hours at the hospital, which I'm SO thankful for (48 would have been a bit much). 
The summary:  

We took Kate for a scheduled sleep deprived EEG on Monday.  Kate has not had any seizures in almost a year and so we thought this visit would reveal normal results, and we would be finding out how to wean Kate of her seizure medication.  Well, that was the opposite of what happened.  We were told that while Kate slept, her EEG showed spikes that are typically seen in epileptic type seizures, and that they wanted us to come in as soon as possible for a 24-48 hour continuous EEG study.  Ever been hit by a ton of bricks??   We were told that a private room was available for the next day, so we took it.


Kate and I arrived at the hospital on Tuesday morning, she got all hooked up for the second day in a row (and was the BEST KID EVER THROUGH ALL OF IT!), and the testing began.  Twenty four hours later I was told the following:  The testing revealed Kate to be having the same abnormalities that were seen during her 45 minute sleep deprived EEG.  Kate had some abnormalities during the day, but the main bulk of seizure activity was seen while Kate was sleeping.   The type of seizure activity observed looks a lot like "Electrical Status Epilepticus during Sleep" (ESES).  The concern is whether or not this type of seizure activity is impacting Kate's brain function during sleep when a lot of learning and development takes place.  This type of seizure can be treated/controlled with a valium treatment given at night (did someone say Valium??  I could have used some Valium...oh, but we're talking about Kate), however, since Kate appears to be developing normally, the team felt comfortable with letting her go home without starting that type of treatment.  The plan as of now is to keep Kate on a higher dose of her current medication, and to have a neuro-psychological evaluation done as soon as possible.  Neuropsych testing will give us a much more detailed look at Kate's overall development i.e., language, cognition, motor skills etc.  If the neurologists see deficits in her development, that are typically seen in children who have ESES, then they may suggest additional medications at that point to further reduce seizure activity.  

For now we will watch Kate daily and look for any signs of lost skills/regression or for any type of seizure activity.  In addition, we'll be booking a neuropsych eval for the very near future as well as scheduling ANOTHER sleep deprived EEG within the next few weeks to see if the increased dose of Kate's current medication is helping at all with her nighttime seizures.

Oh, and one more thing (because it couldn't possibly be MY LIFE if there weren't ONE MORE THING!).  After I said all my goodbyes and thank yous at the hospital, and paid for parking, and took the elevator up to the 4th floor of the parking garage, I noticed that the back door of the car wasn't completely shut.  I thought "hmmm" and then "oh crap, what if the battery is dead??!!"  I got Kate buckled in, put all our luggage in the trunk, got myself in the drivers seat and I turned the key...aaaand the car was dead.  Yes, the battery was dead.  I just sat there more numb that you can even imagine.  I then got out of the car and flagged down the first car coming by.  It was a man and a woman and as I was asking them if they could give me a jump I TOTALLY burst into tears (honestly, this was the straw that broke that camels back).  I blubbered about Kate, and being in the hospital with her, and the woman just smiled and said that she understood completely.  Then these two people pushed my car backwards and into another parking spot so that they could reach the cables from their battery to mine, and my car started.  I found out that the man was heading to a follow-up appointment for himself at the hospital, and I gave him a hug and thanked him and thanked him.  When I got into the car I thanked God for those people because they were like angels to me.   The LAST THING on earth I needed was to have to call and then wait for triple A in a dark parking garage with my overtired 3 year old daughter. 


That's the story.  I apologize if there are tons of spelling and grammatical errors or if any of it was totally unclear.  I too am sleep deprived and looking forward to a (hopefully) NORMAL night and day tomorrow.  Thank you all again SO MUCH!!!!

Candy Candy Candy!!!

The kids went out for some "Pre-Halloween" trick or treating at their preschool last night.  We let them have a few pieces of candy last night and then told them they could have more after lunch today.  It's 9:30 in the morning right now, and my kids had their breakfast less than 45 minutes ago.  Brian and Kelly have been playing downstairs in the playroom and Brian just yelled up, "Mom, Can we have Halloween candy after lunch today?!"  Me:  "Yes you can!"  Brian, "Can I have lunch NOW? I'm getting PRETTY hungry!"
At this rate he'll be eating supper by 11am!  (btw, I told him it was not lunchtime yet, but he could have a snack.  He's agreed to have an apple, even though he is "Really SO hungry" :-).

"Conturnical"

Jeff just took the kids for a little walk down in the woods behind our house.  Halloween is coming up so Jeff has been making up a lot of cute (not really scary) stories for the kids.  When they got to the woods Jeff told them that they could try and find "Pumpkin Paul" (one of the many characters in the stories, there is also "Steve the Skeleton", "Skeleton Kate", and I made up the story about "Pink Ghost Kelly").
When they got home this is what Kate said to me (in a very excited voice): "We went into the woods to find Pumpkin Paul!  Daddy says he is conturnical."  I smiled and went to find Jeff and said, "Did you tell Kate that Pumpkin Paul was "nocturnal?" and Jeff said, "Yes."  I said, "I thought so".  You see, after being a pediatric speech therapist for 9 years, I can interpret most anything. :-)

We Listen to Daddy

After a particularly rough start to the day trying to get all the kids fed and out the door to take Brian to school, I said, "I don't know why you guys don't listen to me."  To which Brian replied, "We listen to daddy."  Me: "Oh yea, well you need to listen to both of us, not just Daddy."  Brian:  "I'll have to think about why we only listen to Daddy."  Me, in my head, "well you better figure it out soon!"

Amazing Brian

Brian is a very bright kid, not the best at listening or following directions (but then again, what man is?? HA), but just super smart.  The other day I had the kids in the car and was heading down to my parent's house for a visit.  While we were driving Brian was telling me something and then in a very cute way he said, "Mom I'm smarter than you."  I said, "Oh really?"  Then he said, "Oh yes, let's have a contest.  See if you can tell me what distracted is.  So, what does distracted mean?"  After laughing to myself I said, "Well, if you're so smart why don't you tell me what it means."  Brian said, "Oh you know, when you're upset about something."  Maybe he was thinking of "disturbed"??  I told him what it meant and we went along on our merry way.  The sad part?  About 5 minutes later I was trying to remember exactly what was said so that I could tell my parents about it, and I couldn't remember the word Brian wanted me to define!  I had to ask my four year old son what it was....and of course, he knew.

Adios!

About two months ago we were all packed up in the minivan ready to go somewhere.  Brian yelled, "Adios house!" and then told Kelly (his baby sister) the following, "Kelly Adios means goodbye.  Adi means good and os means bye."  Well wouldn't you know that just this past weekend we were all packed up in the minivan to go somewhere and Kelly yelled, "Bye house!  Adios!"

Strep - squared (and possibly cubed)

How to successfully spread strep: 1. Take a sick toddler to the doctor and discover that she has strep. 2. Bring home lollipops for her and her two siblings. 3. Sit all three children on the couch with their lollipops, and put on Curious George. 3. Go into the kitchen to start disinfecting everything the toddler may have mouthed or touched. 4. Hear this being yelled from the living room from the oldest child: "Mom I finished my lollipop, and so Kelly is letting me have licks from hers!!" 5. Stop disinfecting. 6. Sprint into the living room in hopes that these "licks" have not yet occurred, only to discover that they HAVE! 7. Have a slight nutty 8. Take deep breaths. 9. Consider letting the middle child have "licks" too, but decide that you just can't do it. 10. Put money aside for at least one more co-pay AND round of antibiotics.
I hope you've all found this helpful (and mildly entertaining).

My handsome little man

My beautiful Brian. He's a sweet and kind and tender soul. The other day I was reading a book to my three kids and while I was reading to them, Brian was patting Kelly on the head. I love you Bry.

Bog Hollow

We made our annual trip to Bog Hollow yesterday. It was a beautiful sunny day and the kids had a lot of fun. Jeff and Kelly stayed home, and my mom and I took Brian and Kate. Here are a few highlights :-)
After viewing these photos it appears as though Brian isn't happy in any of them, but he was. Hmmm....

Don't Cry Over Spilt Milk

I think that whoever came up with this saying was not familiar with organic milk, coming in at $5.99 a gallon. I can assure you that watching THAT milk spill on the floor, can bring a person to tears.

Art - By, Brian

I am in love with Brian's drawings. He loves to color and draw, and I love watching him do it!
This is a picture of Brian and Kate on our swing set.



This is Kelly, Kate and Brian (in that order). I guess in Brian's eyes, Kelly is a small African-American child.

Brian's family depicted as "5 Angry Pumpkins"

This is Brian on his rope swing.

This is Brian and Kate in the rain. Notice that although they don't have arms, they DO have quite prominent belly buttons.