It’s been 15 months since I’ve written a blog post, and
after this week’s events, I decided it was probably time for an update. Until
this past week, life had been going very well. Eddy and the girls have been
healthy and happy, Ed and I have been the same, and things have been going
smoothly.
A Smooth Life.
Something we will never again take for granted ever since
all of the hospital stays and terrifying times we went through with Eddy. We
don’t need a whole lot to make us happy. When you’ve had to watch your child go
through seizure after seizure, IV after IV, drug after drug, just to try to be
healthy and home, you will never again take “boring” old existence for granted.
We love boring. It means that everything is going well.
So life was smooth and wonderful for the past eight months.
Last May, completely out of the blue, Eddy had four seizures. It was a terrible
day, but he was almost back to himself the next day, and I put it out of my
memory. We went on to have a fantastic summer, and Eddy was just a joy. He was
happy and healthy and started doing lots of new things, including using picture
cards effectively to communicate, becoming much stronger and more stable with
walking, climbing the steps up to the kids’ playground by himself, spelling
five-letter words, walking a mile independently!, getting so much better at
feeding himself, and so many other things. And he was seriously always smiling.
He was the happiest kid ever. It was a great summer.
When we had the CSE meeting last spring to discuss his
placement in school this year, we were surprised to learn about a new class
they were offering. It was a multi-age, 12:1:1 self-contained special education
class that would only have 6 students in it, and they thought it would be a
good fit for Eddy. If you read my last blog post, which was all about how happy
we were with Eddy being in an inclusive kindergarten class, and how I have a
Masters Degree in Inclusion and am a huge advocate of it, you would not be
surprised that my first reaction was, “Um, heck no.” I did not want Eddy in a
self-contained class. It wasn’t an option. But as they talked more about the
class, and explained that it would be more of a “centralized hub” for Eddy than
a self-contained class, I started warming up to the idea a little bit. They
assured me that Eddy would still be in all of the specials with his 1st
grade peers, and he could also be pushed into the regular 1st grade
class for math or reading (his two favorite subjects) on a weekly basis. He
would be pulled out for speech, OT, and PT, just like he was in kindergarten. We
loved Eddy’s kindergarten class, and the fact that the students were so good to
him and just adored him was amazing. But on the other hand, Eddy tended to get
overwhelmed with the noise and the size of the class, and he did not do well
sitting on the carpet (which is a much larger part of kindergarten than I
thought it would be!) So with all of these factors put together, we decided to
give it a try. If it didn’t go well, we could always put him back into an inclusive
class with his peers. When we found out that Mrs. Rogers was going to be the
teacher for the 12:1:1 class, that solidified the decision to place Eddy in the
class. (She’s an amazing teacher.) Eddy would still have his aide, Mrs. Youngs
(whom he absolutely adores), and we felt good about the smaller class size and
the calmer atmosphere.
And I’m really glad that we decided to give it a shot,
because Eddy seems to really love school this year. The classroom is huge and
set up so comfortably. Eddy has his favorite things in class (his alphabet
train, iPad, favorite ABC and number books, alphabet bus), and he has so much
one-on-one time with his teacher. His aide is fantastic, and Eddy has a very
special bond with her. I know that he is always in good hands when we send him
to school on the van in the morning.
Last summer, we started home ABA (Applied Behavioral
Analysis) therapy. It is very structured, evidence-based, data-driven, and
reward-based, and it is how Eddy learns best. The thing with Eddy is that he’s
SO smart and he knows so much, but he’s so inconsistent with demonstrating his
knowledge depending on who he’s working with. He’s a stubborn (rewards-based) little fella,
and he knows exactly what he’s doing when he won’t demonstrate what he knows.
Sometimes he’d rather that the person working with him not know how much he
knows, because when people know how smart he is, they expect more out of him.
And it’s frustrating for us (and for his teachers and therapists!) when we see
that he won’t demonstrate basic knowledge that he’s known since he was three
(lowercase letters for example) in settings in school, while at home, he’s
incredibly consistent with getting the answers correct. We’re really working to
help Eddy to generalize his knowledge in all situations, not just where he
feels most comfortable (i.e. home). He started with three hours of ABA therapy
three days a week, and now we’ve increased it to every day
except every other Sunday. (On Saturdays he has two three-hour sessions!) So
he’s getting tons of therapy, and on school days once he wakes up from his nap
at 4:30, he’s working until 7:30 pm. It’s really been incredibly helpful for
him. We were very active in deciding which goals we want him to meet (feeding
himself, dressing himself, imitation, following directions, spelling, strength
building, fine motor control, sitting on the carpet, and so many other things.)
Just yesterday, he fed himself 90% of his chicken and broccoli dinner with an
adaptive bowl, scooping everything independently. He’s made huge gains since
the summer and it’s been so rewarding to see.
So, basically, this is what I would’ve updated last week or
last month, and it’s what I’ve been meaning to add to my blog for several
months now. (But you know, life happens.)
I kind of alluded to this in the beginning of my post, but
this past week has not been a good one. Everything was going fine, but Sunday
night, when Eddy was in the bathtub, he had a seizure. Ed called me in
immediately and told me and we were both incredibly disheartened. We got him
out of the bathtub, and he had another one about ten minutes later. Then
another. We gave him a clonazepam, which didn’t do anything, as he had another
seizure. So we gave him his rescue meds. Normally rescue meds stop Eddy’s
seizures pretty much immediately. But they didn’t stop. Every 20 minutes or so,
Eddy was having a short 10-second tonic seizure. (The only saving grace was the
seizures weren’t tonic-clonic, i.e. grand mal seizures, like they were last
May, and they did stop after a few seconds; the clusters just continued,
though, which was terrifying.)
After calling the pediatric neurologist on call in
Rochester, we were instructed to give rescue meds again. We have never had to
administer rescue meds more than once on any occasion that Eddy has had
seizures. Thank God, after we administered the rescue meds for the second time,
around 1 am on Monday, Eddy’s seizures stopped for a few hours. Then, at 6:30
am when he woke up, they started again. He had one, and then another, and then
another. Finally, when we syringed his keppra (seizure medication) in his
mouth, they stopped for the rest of the day. Throughout that 12 hour stretch,
Eddy had about 20 seizures (give or take a few; we were so exhausted we
couldn’t function, let alone count the seizures, anymore.)
In addition to having seizures for hours, he was also
vomiting after having a seizure. So our bed was covered in vomit. We’d change
our sheets, and then he’d have another seizure and vomit again. Finally, I just
stopped trying to clean up and just put towels under Eddy on my bed. If his
seizures hadn’t stopped after the second set of rescue meds, we were prepared
to drive him to Rochester, where they are equipped to handle pediatric
epilepsy. We’ve gone to our local ER enough times to know that after waiting
for hours, they will just transport us via ambulance to Rochester, where we’d
have to wait in the ER for another several hours. It’s very unfortunate that a
pediatric neurologist who understands the ketogenic diet does not practice in
the area, as we are basically on our own unless we drive two hours.
The rest of the day, Eddy was out
of it from having so many drugs in his system, but he seemed to be doing
better. He wanted his iPad, and he was trying to walk and eat a little bit. Just
when we thought we were in a better place, that night around 8 pm, the tonic
seizures started again. By this time Ed and I were so exhausted that we just
couldn’t take it anymore. Thankfully my parents live five minutes away and
immediately came over Sunday night, spent the night and helped get the girls to
sleep, and came back Monday night when they heard the seizures started again.
My dad took off two days of work to help stay home and cuddle Eddy all day. (Thank
you so much mom and dad!!) After four seizures, I called the neurologist on
call, who never called me back. I called the answering service again, and by
this time, Eddy had had three more seizures. By the time I heard from the
back-up neurologist on call, Eddy had had a total of eight seizures. The
back-up neurologist on call instructed me to give rescue meds (for a third time
in just over 24 hours!), and at this time it was 11 pm. I had a bag packed to
drive Eddy to Rochester in case it didn’t work. Thank God, the rescue meds
stopped the clusters of tonic seizures, and Eddy has not had a seizure since
Monday night at 11 pm. (Knock on wood.)
It’s an understatement to say that
this week has been hard. To have seizures come back with such a vengeance after
such a great stretch was incredibly difficult, mentally, physically, and
emotionally. I was just telling a friend last week, who asked how I’m so
unaffected by so many things and can remain happy and calm in a lot of
situations, that I’m able to put perspective on things now and
compartmentalize, except when it comes to Eddy. I can handle almost anything. I
don’t mind confrontation. I try to remain calm and positive in all situations.
Except when it comes to my boy. My precious, sweet, kind, heart of gold,
nonverbal child. When Eddy was having seizures Monday morning, he must’ve been
able to sense them coming on because he would reach for me with fervor and grab
my neck and hug me so hard, and the look in his eyes was “Mom, please help me.”
It was absolutely heart breaking. I can’t even think about it. But I have to be
strong, because Eddy needs me to be.
Eddy is such an incredibly special
person. He has changed me profoundly. He has made me a better person. He has
made me look at people differently. I see everyone, no matter who you are, as
important. As a person. It’s so vital to look at people with special needs as
PEOPLE. So many people don’t. Eddy, and all people with special needs, are
first and foremost PEOPLE. They may not be able to talk, or walk, or express
themselves, but they have thoughts and feelings and dreams. They deserve
respect, love, and kindness just as much as anyone else in the world.
So this week has been difficult,
but things are already looking up. Eddy is back to smiling. (It was a long day
and a half without an Eddy smile.) To all of the family and friends who have
been praying for Eddy, thank you. And please continue praying. I will never
discount how imperative prayers are.
Eddy is in therapy right now in
our home, and he is doing SO well. His ABA therapist can’t believe how well
he’s doing based on what he’s been through this week. But Eddy is resilient.
He’s the strongest person I know. He’s the light of my life, and I know that as
long as we have Eddy, the world will be a better place.
