Why does the other shoe have to fall?

Since the last blog, we have made some progress.  Jack has been weaned from the nightly muscle relaxer replaced with Trazodone to help aid with sleep & he has adjusted to yet another seizure medication.  The adjustment to the new seizure medication was a bit of worrisome process.  Jack was sort of zoned out much of the time, not saying more than a few sentences a day & not eating.  There were times he would go 36 hours without ingesting food & when he did, it was nothing more than one Big Mac.  The good news is he has gotten over that hurdle.  His appetite has picked up some & sleep is much improved.  One thing that is concerning is the lack of voiding Jack is having.  He went 54 hours without peeing & then peed on himself in his sleep.  It isn’t because he is not drinking, but has such severe OCD with the computer, that he does not want to get up to use the bathroom nor take the time to eat.  When Jack has voided, it has typically been in his bed for the last few weeks.  Most recently being today-twice in the bed!  Once this morning on the floor in his bedroom sometime in his sleep, then when he was taking a nap this afternoon.  Naps are never an event for Jack but he is sick with a fever, as am I.  Ava started this mess last week, it is slowly working its way around the family…dear Lord, save us by not letting Lee get sick (hate a sick man) lol.  I have a baby monitor in Jack’s room that allows me to hear what is going on, I feel terrible I missed this one, blaming it on the sickness.  I usually sleep with one eye open, one eye closed.  My washing machine is in constant spinning mode, I need one of the commercial sized “Big Boys” that the laundromat has!  Jack’s bedding has been washed more than any Hampton Inns bedding!  I just told my mama & sister that I made up Jack’s bathroom tonight (meaning making up his bed)!

There has also been a slight change in his behavior.  He hasn’t been as snippy as before.  We certainly hope this is the balance we have been praying for.  We are nervous though.  For those that are not familiar with the term “honeymoon phase” used to describe seizure medications, it is when the seizure medication works for about 6-8 weeks & boom, the medicine stops working.

Christmas was hard this year in more ways than one.  First, Jack never made it past the kitchen for weeks to look at the Christmas decorations.  This was a child that got so excited every single year about putting up decorations, hanging his stocking & the ornaments he made, & talking about what Santa would bring him.  With Jack’s intellectual disabilities, we always thought we would have that child-like Christmas.  Watching Christmas movies & cartoons was always a major highlight for Jack, he never even turned on his TV.  Trying to get through the holiday by grinning & bearing it was tough.  It was like we were watching our child die in his room.  Not eating, not peeing, not talking, was heartbreaking.  Christmas morning, we had to change our typical plans which is inviting family over for a big breakfast Lee prepares (which wasn’t half bad because that man uses every dish, pot, pan, & utensil in the house) since we did not know how Jack would be.  Christmas morning was disappointing for Jack.  He never once told me what he wanted for Christmas.  He doesn’t go anywhere to need/want any clothes, nor is he into toys any more.  The sadness that invaded Jack’s eyes was almost too much to bear.  It was really a melancholy Christmas.  We are usually on high alert during Christmas time when we are around family & friends because that is when Jack tends to have seizures, that was not an option this year.  He refused to go anywhere.  So when my parents had their Christmas Eve gathering, Lee stayed home with him so that I could go with Coleman & Ava.  However, he did go to my parents Christmas day & barely got through it.  He was acting weird, Lee & I were scared to death.  We left early to prevent any seizures or behavior disruptions.  For years, we dreaded holidays & special events because of the frenzy Jack would work himself into with lack of sleep, behavior problems, & seizures, now there has been a complete 180 turn.  To see friends enjoying their holiday or even a simple meal with family & friends does make one jealous when our lives are not easy & can not be enjoyed like so many of you.  I know it’s not right to be jealous but I am & I pray that I can overcome that feeling.  After 16 years of nearly everyday feeling like an emergency, it gets to a person.  Now, don’t go hiding your vacation pics from me, I still want to see them but I will secretly hate you!

Just a few days ago, Jack turned a corner.  He came out of his room a lot (for him), he even ate breakfast which he never does & even carried on several conversations & then the other shoe fell…he got sick!  Illnesses are always hard on Jack.  Fevers bring seizures & often times bad seizures, ones that land us in the ER.  It means around the clock temp checks, making sure he is drinking enough along with lots of ibuprofen.  This is the longest I have kept our Christmas decorations up.  I usually have them put up a few days after Christmas, can’t swing that this year.  I did manage to get the tree down today & boy was that thing crispy!  After vacuuming the whole house, I was done with my un-decorating for the day, the fever getting to me as well.

Please continue to pray that this medication will continue to work to keep Jack calm & help to stimulate his appetite.  A statement that I NEVER thought I would say, the seizures are secondary, keeping the behavior issues at bay is the key.  As I end this blog, I will start the next one at part 4 continuing the story as we began to learn about Jack’s diagnosis.  Happy New Year’s Blessing to each of you.

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog