Wednesday, January 15, 2014


We are home!   The EEG was clean which is what usually happens.   It's a one hour glimpse of time and his seizures have never shown up on it.  He has been happy and active so we felt comfortable going home.  
He was really eager to leave.  In the morning he kept telling us he would wait and have his juice and crackers in the car.  Then when we were leaving he said,  "Hey mom,  when we get home let's shake our booties!"
The brothers were really excited to be reunited as were we.
We don't know for sure the exact reason Luke's seizure got so bad this time.   We're hoping the increase in medicine will put a stop to them for a long, long while.   Thanks for your love and support!

EEG wires

Tuesday, January 14, 2014

Seizures Suck!!

While seizures do indeed suck, I'll once again express my gratitude and love for St.  Louis Children's Hospital and my new affection for West County EMS.  Long,  long story,  but Sunday night Luke ended up having a seizure that by the time it was all said and done lasted over 1.5 hours and took 4 doses of rescue drugs to stop.   Even then he turned around and shortly after started up again requiring two more rescue drugs and eventually a sedative to put him out.  Luke was breathing on his own but because his oxygen levels were dropping unless he had help and his blood carbon dioxide levels were increasing because he lacked the strength to expel his breath properly he ended up being intubated for a short time.  He was able to maintain his levels the next morning and have the tube removed.   To say it was a terrifying night for us is an understatement.   What I will say is we are incredibly grateful for the West County EMS department for bringing us to SLCH.  It is not the closest to our house so we were relieved that they were more than willing.   They also listened to us when we explained Luke's seizures because they are so difficult to identify and gave him more medicine on the way to the hospital.   The doctors, nurses and staff at SLCH continue to comfort us during extremely trying times.  
We're still at SLCH.  He's resting comfortably.   He seems tired and irritable but who can blame the poor kid!  
The last few weeks have been trying.  He had a short run of the stomach flu,  followed by seizures,  followed by (wait for this one!) shingles (argh!), followed by the seizures from hell.   After much testing they also discovered he has some random, uncommon cold virus... Not a terrible virus just another thing on top of it all!  Grrrr!  Our poor buddy!
We try to focus on our positives so we can keep our heads above water.  Our family and friends are amazing, as usual.  Ben is hoping that we DON'T get out today because grandma's is soooooo much better!  I've had lots of prayers and support from work and an amazing friend helping make sure my classroom is ready.   Dan's work continues to be understanding as neither of us feel comfortable leaving Luke for very long.  Lots of love and support has been pouring in from friends and family.  We truly don't need anything except for prayers and your kind words.   It helps a lot.  
Dan is amazing in these situations. I am both relieved and impressed with the way he can keep his cool and use great judgement when I feel like I'm a panicking mess!!!
At this point, Luke and Dan are taking a little well deserved mid morning snooze. We're waiting for the neuros to do their rounds so we know what the next step is. They are planning to do an eeg today and then we'll see.  We're not entirely comfortable with his level of stability-he's walking around like he's had one too many adult beverages!  But we also understand the last few days have kicked his butt!  He's tiring easily... Also understandable.   So we'll see.   This was a great deal scarier than last year (I didn't think it could get worse!!!) so we're in no real hurry to get out of here!
Thanks for all the love and support.  The kind words and prayers mean the world to us.
Snoozin' with Tucker and my daddy! 

Warm, cozy socks! Luke loves wearing warm socks! 

Finally eating to make mommy happy!

Juice, keys and the iPad....hmmmm maybe I'll stay a few more minutes!

Thursday, January 2, 2014

Happy New Year!

Happy 2014!  I wish that all the things I post in my head could magically appear on our blog...My posts are coming so infrequently, I hope I have another one before 2015!  We have had a great fall and Christmas. 
Snuggles for Santa!

Luke's requests for Santa Claus were as simple as last year...keys, crunchy potato chips and cookies. Santa was kind and brought him all three. Although the keys Santa brought still weren't as good as mom and dad's keys...he cannot be fooled with fake keys - even if they appear real!  He gets slightly (ok, maybe a lot!) obsessed with things and right now car keys are a HUGE obsession.  But he only wants our keys.  We thought if Santa brought him real keys then we could stop worrying about whether or not he was losing our keys.  No such luck...his joy over his Santa keys lasted about two days!


Physically he has had huge gains.  He is now able to jump off the furniture and land on his feet (check this out!).  Now, poor Ben would have been told NO in a hot second, but Lukie...well, it's good for him.  He calls it Canyon Ball since that is what Ben called jumping into the pool.  So we see him hop up onto the couch and yell 'Canyon Ball' as he dives off.  He's really jumping good distance, too.  So now both monkeys are regularly jumping off the couches. It's not creating good habits or polite children but it sure is creating one strong little boy and that is our goal.  He will also pretty much only get on the couch by climbing on the back.  He's turning into quite the little monkey! 

Ben and Luke have been having a great time together.  As they're playing, I often hear them get into arguments which is music to my ears.  It's so great to hear 'NO I DIDN'T!  YES YOU DID!'  being screamed from the top of their lungs.  Ben has gotten really good and realizing things that are going to upset Luke and he jumps right in to try to make him laugh or tickle him.  It's really sweet.  It usually erupts into a lot of underwear talk and booty shaking but that's ok.  While I feel bad that Ben is in the position - probably for quite a long time - to be on the lookout for Luke, I also realize that's just what big brother's do.

Luke has always had mild eating issues.  He had a hard time learning to drink thin liquids but has mastered that.  With his low muscle tone, he has a hard time realizing how much food he's putting in his mouth.  He always needed to be watched carefully when he ate and have his food cut into small pieces.  He has come sooooo far! Now he gets angry when we cut his food up.  He is successfully taking bites with very few reminders and rarely overstuffing...unless it's an Oreo.  Who can blame him then? 

Luke's starting to make gains conversationally, too.  He still has a hard time carrying on a two sided conversation, especially with peers.  But we're excited that he's starting to take part in conversation and making sense.  His language skills overall are amazing.  He's talking in long sentences and starting to sing a lot of songs.  His favorites are Drummer Boy and Happy Birthday currently.  He is starting to stutter a lot which I'm wondering if it's in connection with the return of the bad...seizures. 

As I said I've been posting a lot in my head with all of the stuff he's been doing that is amazing so I don't want to focus on this part.  The seizures did reappear over Christmas break (REALLY?!  Argh. Next year we're heading south.  I'm done with Christmas!)  They're a little different than they were before which is worrisome.  I'm kind of wondering if he's been having some that we didn't recognize for awhile because it's been within the last month that his stuttering has picked up A LOT,  he's been getting upset really easily, and we have noticed a little more clumsiness.  I received calls from both his daycare and classroom because he was acting abnormally recently.  So we're working on getting that back under control again...we had almost 8 sweet seizure free months...hopefully we'll be looking at more this time.  I hate them.  A lot.  But I am grateful that we usually can get them under control.  I'm always afraid that 'this time' we won't be able to but there's no point in focusing on that right now.

Happy, happy New Year to you all!  My only resolution is going to be to try to enjoy all the wonderful moments we're having right now and stop worrying so much about the future!  Hope you're enjoying your moments, too!