Let's Get Physical

You know, this school year has been very, very interesting.  Interesting and full of surprises, causing our family life to become extremely flexible.  AJ has had a rough year thus far physically.  He's doing INCREDIBLE in school-as in this is the best year he's ever had!  Way to go AJ!  But, as we special needs parents know, when one area gains, another area gets jealous, throws a pity party and stomps it's feet.  Well, not really-but you know what I mean.  When one area sees gains something else regresses a bit.

We knew his body would go through a large growth spurt between the ages of 4 and 7.  Oh, that couldn't have been more accurate.  His school schedule this year has him attending 5 hours a day.  His start time, which was moved to a later time in the first place, I know tell people who ask, "He starts at X o'clock, or whenever he wakes up".  I have cancelled, rescheduled, and cancelled again so many appointments, plans with friends, and just plans in general that I've lost count.  And honestly, I'm just used to it.  If you would have talked to me 4 years ago, I would have been angry at myself and the world for something not working out.  But, I've learned that life needs to be flexible, and if I have to cancel, I have to cancel.

He has fallen asleep at school a lot this year.  He's had several seizures cycles, illnesses, and days where he is just too weak to function.  We have had two seizure medication changes already. His sleep his been horrid and without pattern.  If you would have asked me a week ago when the last time was that he slept through the night, I couldn't have told you.  He was so tired, yet couldn't sleep.  This caused him to get bored, and agitated, causing him to continually take his pajama bottoms and pull-up off and pee on his bed.  Several times a night.  Sigh.  

As a parent, I feel helpless.  Because for AJ, growing is NOT fun. Several weeks ago I walked into school to pick him up and was lead to one of his classrooms by his assistant.  He was sitting on the floor and refused to put his coat on.  Anytime we'd try, he'd scream out in pain.  Anytime we tried to have him stand up, he's scream in pain.  Another day, I walked in to find him sitting on the large rug by the school office.  He was in so much pain standing, he wouldn't put his left leg down and bear weight on it.  I've had several chats with his school staff about his aggression.  He has no other way to tell us he's in pain.  

Why so much pain?  Because he has cerebral palsy.  When he grows, his bone grow, but his muscles don't follow as fast because the brain isn't sending the message that they need to stretch.  Insert PAIN.  I'm taking him for botox injections regularly now.  They are supposed to last 3 months, but with AJ's super-hyper metabolism we are seeing it wear off sooner.  He had his last injections (4) in his left leg three weeks ago.  

That weekend he spent an entire two days in bed with high fevers and a wicked cough. Have you met AJ? He's like a superball.  This is rare. I kept him home from school that Monday and even Tuesday.  He felt better on Tuesday, but not well enough to make it through an entire day of school.  I thought we'd take a drive, just to get out of the house.  Well, the botox had kicked in-add that to his general tiredness and he fell face first onto our driveway.  He busted his lip and his top three teeth pretty good.  

We spent three hours in the ER-where they did absolutely nothing-and headed up to see his dentist in the dental clinic.  He has subluxation.  We are now a week out from the incident and still watching his teeth.  He's on a soft foods diet until further notice-which has been interesting to say the least-and those teeth are wiggly.  We're doing our best to avoid infection and tooth death.  I'm thankful they are baby teeth!  Our biggest challenge?  Well, two challenges.  Getting the blasted oral antiseptic on his teeth and limiting his oral stimulation/bite & chew therapy toys.  Really hard to do with a child that gets so much organization from his MOUTH!

Two days later he spiked another fever and his cough was considerable worse, so we headed to the pediatrician.  Viral bronchitis.  Viral won't respond to antibiotics-so, and I quote, "Just let it run its course."

Wonderful.  Thankfully, AJ loves honey, steamy bathrooms, and lots of Vicks.    

This was all last week.  He's feeling better, with his cough just kicking in around dinner time.  We're on Spring Break this week and I'm so thankful we didn't have plans to travel.  Don't get me wrong, I'd love to be somewhere warm, but some down time was definitely needed.  The snow is melted and the sun is shining!     

As much as I am in disbelief AJ will be 7 soon, I'm welcoming that age with open arms for my little guy as far as his body is concerned.  He's such a trooper.  We keep doing the usual regimen, taping his foot and hip, deep tissue massage, vestibular activities, and warm water swimming.  I'm a stubborn mama, fighting to keep him away from surgery.  We can do it!

JDRF Walk 2010

This year, Jeremy formed a team for the 2010 JDRF Walk to Cure Diabetes.  The walk was held at the zoo with the theme "Follow The Yellow Brick Road".   Our team name was "Dr. Jain's Crew". We had quite a team, and despite it raining the first 10 minutes of the walk (literally, we crossed the start and it started to rain) it was a great day! Thank you to all of the walkers on our team, to everyone who donated, and to all of those who, like Jeremy, continue to thrive while living with diabetes!

Dr. Jain & Jeremy

 Dr. Jain's Crew
JDRF Walk To Cure Diabetes 2010

To check out some awesome stuff JDRF has going on (like the artifical pancreas project!), click HERE.
To see a really cool timeline of how far treatment of diabetes has come and more milestones, click HERE.

Get Funky

So apparently my post which included the line "Jeremy's brain gets all funky and we try to figure it out," was quite funny.  I don't disagree.  Even Jer laughed when he read it.

I'll try my best to give a brief synopsis. 

Three weeks ago, Jeremy started feeling dizzy.  His primary doctor thought it was labrinythitis.  We were told to go enjoy our long-anticipated, we-hadn't-been-away-anywhere-in-over-a-year mini vacation to our B&B just outside of Madison over Memorial Day weekend.  If it didn't subside, he'd see a neurologist the following Tuesday. 

We should have stayed home. 

After coming home on Monday, Jeremy and I spent a couple of hours in the ER, arriving home at about 2AM.  His dizziness had not subsided, but had gotten worse, so we thought better safe then sorry. His symptoms also included tingling on his right side and on the left side of his mouth.  They did a CT scan and sent him home with the diagnosis of dizziness and told him to follow up with the neurologist the next day. Helpful.  We were entertained though...as there was a cocaine addict handcuffed to his bed in the "slot" next to us (those curtains give soooo much privacy, not) who was singing away and trying to schmooze the female staff.  We became friends with the cop who was spending his shift with the cocaine dude.  Fun times.

The following day he saw the neurologist who sent him for an MRI of his brain and spine.

The MRI showed a lesion on Jeremy's brain.  Get ready, set, go, for a mammoth race to see how many needles we can stick Jeremy with and how many procedures/tests/labs we can run.  At this point, this whole episode is being called a 'clinically isolated syndrome'.  Meaning, freak thing, that just happened.   We have the option to treat with MS drugs, or not treat.  There is no definite test for MS.  It could be a freak one time thing, or it could be the first flair up of MS. Are we having fun yet?

Regardless if it is a one time thing, the treatments could be preventative.

Mixed in all this fun was AJ's 4th Birthday Party and AJ's 2nd CI activation, which was also on our 9th wedding anniversary, AJ's school field trip and last day of school.  Whew!  I took AJ to school the day of activation, dropped off some wickedly cute cupcakes (since of course he had snack that week), came home with lunch, shoveled food into everyone's mouths, and sped off to Children's Hospital to have AJ's left implant activated. 

After the activation (which will have its own post soon, I promise) we drove to Jeremy's neurologist's office to hear the news about the "there's bad inflammation, our suggestion is to treat, here's 20lbs of literature to read, you will get better".  Jeremy didn't hear the "you will get better" part, so its a good thing I was there to give him the pep-talk/translation on the way home. His symptoms were fluctating, so that meant his brain was healing. Thats a good thing. We left the office completely drained, and drove home in rush hour, in the rain.

We cried, we laughed, we talked, all as we crawled on 43 South.  Happy Anniversary.  We grabbed subs on the way home (due to the steroids, that was the only thing that tasted good to Jer) and called it a night. 

After 2+ weeks home, Jer returned to work this week.  Which has been good for everyone.  His symptoms have decreased dramatically and he's in much better spirits.  Brain funkiness sure does mess with the mind.

I want to thank my Mom for watching AJ over our mini-vacation-gone-wrong...and then coming back hours later so I could take Jer to the ER.  Thanks to Jer's Mom for coming into town and watching AJ during the constant procedures and tests.  You both ROCK.

Another thank you to Jeremy's incredible co-workers.  While I knew this already, this situation brought on amazing kindness, understanding, and support from his entire crew.  I met co-workers who's names are mentioned often, caught up with some I hadn't seen in a while, and they all were able to see AJ.  Under the circumstances, it was wonderful to know my husband was so supported by those at his workplace.  His neurologists are literally down the hall from his office, so not only are they now his physicians, they are colleagues.  Truly awesome.

And how can we laugh about it?  Because otherwise we'll cry.  And believe you me, we've done enough of that.  Have we asked WHY?  Oh yeah.  Its not fair, we didn't need this, as my father-in-law used to say it sucks canal water. But...we can't change it, we can only move forward. One thing we learned with AJ-take things one step at a time.  This mindsight was critical to Jer's brain funkiness.  Jeremy and I keep each other in balance.  He's very laid back.  I'm more structured and gung-ho, if you will.  To see my hubby not laid back, made me out of balance.  We're just about back to 50/50...I think.  Jeremy is feeling better, and for that, we are VERY THANKFUL.

And honey, don't forget that I love you,

even if you are a bit funky....