Thursday, December 27, 2012

A few things that I have been reflecting on the last few days...

1. Christmas happens when you're together with the people you love.
2. Four year olds are incredibly flexible.
3. The staff at St. Louis Children's Hospital is AMAZING.
4. Life is precious.  We shouldn't need reminders about that...

To say that we've had an eventful few days is such a drastic understatement.  It makes me tired to even think about writing all of it so I'll try to give you the condensed version. 

As I recently wrote, we increased Luke's seizure medicine almost two weeks ago.  Well, unfortunately, that didn't do the trick.  Sunday, Luke woke up and began to have seizures pretty quickly.  It started slowly and then turned into something ugly. We ended up in the Children's ER.  They used two doses of ativan to stop his seizures.  We were at Children's until Tuesday for observation and testing.

He was scheduled for an MRI next week but they went ahead and moved it up.  That was done Monday.  Luke was NOT happy to be in the hospital so he screamed all the way from the PICU to the Imaging Center.  While we were waiting to go in, he stopped screaming for a second and said, "I am a wock (rock) star."  It was so sweet and so sad at the same time.  The neurosurgeon also decided to do a lumbar puncture (aka spinal tap).  He wanted to make sure Luke's spinal fluid wasn't too high which could be causing some of the nausea.  The official MRI report isn't in but from initial reports it doesn't look like there was a huge change.  His spinal fluid was on the high end of normal.  So that all tells us pretty much....nothing. 

We were released Tuesday afternoon with another increase in medicine. His meds have been doubled in the past two weeks.  There's no real answer/reason to why his seizures have increased.  We've always known he is prone to seizures due to his diagnosis. We did find out that his seizures are called complex partial seizures.  We never had a name for them before.  We meet again with the neurosurgeon next week. 

We discussed doing a 24 hour EEG with one of the neurologists.  Since Luke's seizures - at this point - seem to be so sporadic we decided to see if the medicine increase seems to be working before going on to an EEG again.  Luke had already been through a lot and it seemed pointless to put him through that when we already knew he was having seizures. Once they were able to stop his seizures in the hospital, we felt like he wasn't having anymore.  So if we would have had the EEG, it likely - again - would have shown nothing. 

Obviously we were devastated by Luke's seizures continuing and particularly becoming so bad.  Selfishly, I was also sad to be in the hospital on Christmas Eve and Christmas.  Children's was amazing though.  Every person I spoke to was so sweet.  No one at all showed any remorse at having to work and be away from their families to help our family and the other families on those days. 

Of course I was sad to be away from Ben.  Ben was awesome!  He got to stay with Grandma & Pawpaw, play with his cousins, and watch Polar Express in Aunt Amy's car while going to look for reindeer!  While we were going through the whole ordeal on Sunday, Ben drew a picture for Luke and found the tape and hung it up in Luke's room.  Every time I talked to Ben he almost immediately asked to talk to Luke.  Then on Christmas Day when I told Ben that Santa told us he was coming the next day he said.....OK.  That's it. Just 'ok'.  It was such a big deal in my head but for him...he just rolled with it.  We had Christmas with my family that afternoon and Dan's family rescheduled for the weekend.  We were all together and that's all that matters. 

On Christmas morning, I received a phone call from one of my best friend's husbands.  We were pacing Children's, waiting for doctors to release us so we could go home to be together on Christmas Day.  He told me that my friend had a brain aneurysm on Christmas Eve.  She was waiting to go into surgery to try to repair the damage.  At this point she is doing really well.  She has made really great progress so far and I'm hoping and praying for a speedy recovery.  Please keep her and her family in your prayers.  She has two young children who are going to have a lot to try to understand. 

I was also reminded of a sweet momma whose little guy can't be with her in body anymore....a momma who had to say good-bye far too soon to her sweet guy.  She took time to send mighty love to Lukie.   

With everything we went through with Luke the last few days, I was reminded that the most important thing to remember is that we are all together.  Period.  We are so blessed. 

I think Luke is just about back to 100%.  He's been really spunky today and seeming back to normal.  We're still really scared at night and constantly on the look out for seizure-like activity.  But every day will get easier....together. 
Look how long those legs are!!!  Hanging out in the PICU. 

Thank goodness for iPads!!  Watching Mickey with Puppy Dog, Daddy and his NEW puppy dog that one of the nurse's got him before we even left the ER. 

Snoozing with Daddy after we were moved out of the PICU.

Visiting with Pepper the therapy dog on Christmas morning.

Thursday, December 20, 2012


Sorry it took me so long to post this!!!  Luke's hour long EEG came back 'clean'.  This means that during the hour he was hooked up to the wires, he didn't have any seizure activity which is what we expected.  What does that mean?  Originally, I was determined to push for a 24 hour EEG so we could see what was happening when he was in a deep sleep at night.  However, after talking to the neuro's office and going through the 'super-fun' EEG experience I'm comfortable waiting for now.  He's doing really, really well again (WHEW!). 
I think that this whole experience was a big wake up call to make sure we are extra special careful when he is sick.  It is normal for children with epilepsy to have increased seizure activity when they are sick.  His medicine was increased and even with the increase - from what I understand - he's still on the low end of dosage quantity. 
He also has his 3 month kidney ultrasound and 6 month MRI coming up within the next few weeks.  I haven't seen anything at night recently that really worries me so I feel like he's got enough to go through in the next few weeks. 
Thanks for the prayers and the words of encouragement!  Wishing you all a happy holiday!
Fun Santa sensory fun with whipped cream!

Fake bearded Santa.  Enough said.

Tuesday, December 11, 2012

Ups and downs...

I've been meaning to update for awhile!  It somehow always gets away with me.  So I'll start with what I've been wanting to update with first....the ups! 

Luke finished his first year of Equine Therapy in November.  As you all know, we certainly had ups and downs with that.  We ended, though, on a big up!  The last few sessions he was eager to get out of the car and would ask about riding Dusty.  He also, we discovered, LOVED trotting on the horse.  I was really nervous the first time they did it because I was sure he would throw a fit.  When Dusty stopped, he had a HUGE smile on his face and was bouncing up and down saying 'Faster, faster!'  He also had a super special volunteer, Jody, who made him an adorable hat for his last session.  It has stars on the top and she named it his 'Twinkle, Twinkle' hat.  He picks it up and wears it around the house!  It's adorable!!  We are signed up for all five sessions in 2013 starting in February!!!  Yay!!! 
Faster, Dusty, faster!!!
Luke and Jody with his sweet Twinkle, Twinkle hat.

We had our first meeting to begin the transition to the school district.  I remember the first meeting I ever had with our First Steps coordinator.  At every meeting she has to tell us that when he turns two and a half we have to begin the transition to the public school district.  It seemed sooooo far away and now it's here.  It's so odd to be on the 'other side of the table'.  As a teacher, I've sat in on many, many IEP's.  It's really strange to be the one that they are focused on.  The meeting went great.  At this point, we're hoping to get through on this loophole that will allow us to keep our First Steps therapists until August.  We'd still have to follow the school district schedule and the therapy that the school district deems appropriate.  BUT we'd keep our therapists which would be awesome.  Luke has made such incredible progress the last two and half years.  I don't want anything to interfere with that.  We have his diagnostic testing in February which will determine the services he will receive  as well as his placement. 

His speech is continuing to grow appropriately.  He's just starting to ask questions which is really exciting.  He can ask 'can' questions (Can I have one?, Can I watch Mickey?, etc.).  Once he realized he pretty much gets anything he wants when he asks correctly he's been using it pretty consistently!! 

OT and PT continue to do really well, too.  He is still working really hard on being able to run but he's making awesome progress. 

We had to keep him up late
and get him up early for the
EEG so he would sleep.
Almost three weeks ago, Luke woke up throwing up.  I think it all started as sinus drainage.  He has been taking Zyrtec for months and months...but still has allergy problems.  Anyway...he'd throw up one day, then not the next, then for a few days, and then not again, etc.  He also was having really messy diapers (to put it delicately!) off and on.   He would seem better for a day or two then get worse again.  Also, he was only throwing up when he was in bed, usually between 5:20-5:25 in the morning.  While he was up and moving during the day he was fine.  He was happy and active.  He would only start to seem like he was having problems when he'd go a few days without eating and drinking.  We went to the pediatrician and also the ER.  After the ER, which gave him anti-nausea meds and probiotics he seemed to get better for a day or two.  Then it all started up again...I never felt like it was anything viral because NONE of us got it.  Usually when one kid 'falls' the other isn't far behind.  Ben has not been sick at all.  Since he wasn't getting better, I decided to call the neurologist's office.Upon talking to our neurologists office, it was decided that the vomiting and messy diapers were likely unrelated.  The neurologists office was thinking that the vomiting only in bed sounded a lot like he was having seizures again.  

Sleeping with Puppy Dog during EEG.
I think we'd gotten really comfortable being a year out of having any seizures and since he was having random yucky diapers we were hoping we weren't there again.   Well that night we watched even more closely and sure enough, he had two seizures that night.  Needless to say, we were (are) completely caught off guard and so sad.  He hasn't had his medication increased in over a year.  Also, I was reading that when someone who has epilepsy has prolonged diarrhea, it can change the way the anti-convulsant is absorbed in the system.  SO...we had an EEG today.  I don't know if it will show anything.  We should find out later today or tomorrow.  I think the the plan is to go ahead and increase his medication. 

The part that scares me the most is that the kind of seizures he has are really hard to detect.  Unless he vomits afterward, when he's sleeping, we really don't know.  That's pretty terrifying to us.  I guess the good news is they are not seeming to affect him like the ones he had last year.  But I still want to know for sure and get them taken care of so we can all rest more easily. 

By the way....that was the 'downs' in case you didn't know:)  But that's the only 'down' we have had in awhile so that is also an 'up'...right??? 

Oh!  And another BIG least in my opinion...Luke and Ben are really starting to play together.  He used to try to whack Ben anytime Ben came near him, but now he and Ben are starting to play together and Luke is laughing hysterically at Ben.  Together, they totally rule the household, and I must say I'm OK with it most of the time!!!

He's really doing awesome overall.  I'm hoping that the medication increase and trying to stay healthy will keep the seizures at bay for a long, long while again. 

In case time slips away from me again, I want to wish you all a happy, healthy, loving holiday season.  Luke is really excited about Santa.  He wants presents, surprises, almonds and trucks.  I'm not sure he totally understands it but he seems pretty excited!  Due to all the sickness, we haven't made it to see Santa yet.  If we get there, I'll be sure to post pics!! 

Much love to everyone....