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 up...at 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....