Sunday, July 19, 2015

A Good Week

Hello again.  Shockingly, I'm blogging in a more timely fashion.  After my last post, which was somewhat of a bummer, I wanted to note that Soren had a really good week.

On Monday, Soren's new daytime caregiver showed up.  He'd had a rough morning of seizures (3 before 8:00), so he was a bit pokey.  But then he began peeking at his caregiver, sizing her up.  Aaron had provided "Hitchhiker's Guide to the Galaxy" for her to read to him.  And so she started reading, and Soren kept his eye on her while she did.  When I came home to feed him lunch, he had perked up.  They were watching "Spirited Away" and Soren actually seemed interested in the movie.  That night, Soren was talking and talking.  He was so excited, he didn't even want to go to sleep when the rest of us were heading to bed.  

The next morning, Soren was rarin' to go.  He was awake for almost the entire time his caregiver was here.  She read to him and they watched "Star Trek: Into Darkness."  The gal has great taste in movies!  When Soren's afternoon caregiver arrived, he talked to her continuously, and was a helper in the shower.  He was just chockfull of energy.

Wednesday was rougher.  Maybe adjusting to all that excitement?  He had a bunch of seizures and he slept most of the day.  But Thursday and Friday he was back to his energetic self.  By this time, his caregiver had finished "Hitchhikers" and moved onto "The Kneebone Boy" (one of his sister's recommendations).

Oh, and Friday morning we heard Soren cry out at 5:15.  Aaron and I ran in and Soren had scooted and turned so much in his bed, he trapped himself between the mattress and the gate.  Horrifying?  Sure.  But exciting that he had THAT much energy?  Absolutely!  Now we just need to put the pillow back between him and his gate.  It had been so long since he'd moved around, we'd stopped doing that.

Soren hasn't had any seizures since Wednesday and this weekend his energy has continued.  He's been chatty and he's been moving all over the place.  Lots of stomach crunches.  We can tell he desperately wants to sit up on his own, but he just doesn't quite know how.  If these seizures would stay away, who knows what he could do?

This week Soren does a morning camp (something I need to blog about another day).  His caregiver will be with him so I can work.  Hopefully he'll enjoy it as much as being read to and watching movies!


Sunday, July 12, 2015

Big Changes

I just went to Soren's blog page and realized that I haven't written anything since February!  Good gravy, that's a LONG TIME!!!

Why haven't I written for so long?  Well, usually when I blog, it's about something really cool or important that's happening with Soren.  I guess I haven't felt inspired for many months!

Why?  Well, as far as his seizures, he's not doing great.  That is never fun to write about.  July has been especially rough for him.  I have no idea why.  He's having 1-2 BIG tonic-clonics each day.  They really knock him out.  I've even had to give him the emergency medicine Clonipin a couple times, which stops the seizure activity but completely zonks him out.

Because of all these seizures, we haven't seen Soren smile or laugh for a LONG time.  That's really hard as a parent.  To have a child that smiles and laughs--even sporadically--and then it all gets wiped out by seizures?  Super sucky.

But things have been happening in our lives that I can update you on.  In April we got a new couch.  There were many reasons for this.  1.) Our couch was 18 years old and had seen better days.  2.)  Moira didn't like sitting on the separate armchair far away from everything.  3.)  It was getting too hard to get Soren off the Living Room floor.  And 4.)  Our house was hit by a car and glass got all over our old couch.

That last thing happened AFTER we ordered our new couch.  But it's a good thing we did, because our couch was then ruined!  We now have custom built sectional with a chaise for Soren to stretch out on.  And he LOVES it.  While we may not get smiles from the boy, we get excited snorts.  He waves his arms and kicks his legs.  It's a good couch.

The other big thing that's happened since February is that I got a full-time job.  This has really thrown me for a loop.  I'd been freelancing for almost 11 years!  I was used to being able to pick up my kids, feed and shower Soren in the afternoon, and make up my own schedule.

The great thing about my new job is that it's REGULAR PAY!!!  Woohoo!  No more wondering what I'll be writing next or when I'll get paid for it.  When I was first offered the job, I was told I could work from home.  And while I can if needed, I've also been given a lovely office.  And I feel like a bit of a jerk if I don't go in and use it!  Plus, when I'm actually in the office, I'm constantly pulled into meetings.  So they kind of need me there!

I got the job at the end of April, when the kids were still in school.  So I would go in, work in the office until 2:30, zip home just in time for the bus to drop Soren off, give Soren his snack, and then drive across town to pick Moira up from school by 4:00.  Then Moira's finals came, and I had to pick her up at 12:30!  So I was barely in the office.  It was bananas!

Now it's summer, and I don't have to pick up Mo.  And I was feeling bad for leaving early when I knew there were meetings.  So we decided we should look for a caregiver for Soren.  Now, we haven't had someone helping us out regularly for YEARS.  Probably since Soren was 3 years old and started school.  And now we needed someone that could lift an 11 year old boy, diaper him, shower him (preferably), and feed him via a G-tube.  That's a lot to ask of someone!

But then we were watching TV and a commercial came on.  I said to Moira and Aaron that there ought to be something like that for people with special needs.  Aaron said I should check out their site and see if that was an option.  Lo and behold, it was!!!  Even the option for someone that knew how to feed someone with a G-tube.  So I placed an ad for a worker that could care for Soren and within a day, I had numbers of people applying for the job.

After doing interviews, we hired a very nice woman who has worked with kids with special needs and the elderly.  She's totally comfortable with the G-tube AND she can give Soren his showers!  It's AMAZING!!!  Soren put her through a bit of "trial by fire" that she survived quite well (I will spare you the graphic details on that).  Was this intentional?  Was it him being irked that someone other than his parents was caring for him?  Who knows.  But the caregiver rolled with it and now Soren seems to trust her.

Now I don't have to stress about having a meeting at 4:00.  I know that Soren is covered and safe.  And even though it's an adjustment, I think it's a good growing experience for us all.