End of the Year Wrap-Up

It's been quite a bit since I blogged.  I always want to give folks good news.  And it's not the Soren has been doing poorly.  He's just been maintaining the status quo for a while.  But then as I thought of  his year, I realized he has had some stuff happening that I haven't noted.

• Soren's Legs:  Have gotten REALLY tight since last year.  Soren injured the pinkie toe on his left foot around this time last year.  After that, he started guarding his left leg because the toe took so long to heal.  We massaged his legs, but they just wouldn't relax significantly.  So we went to an orthopedic surgeon, who informed us that Soren's left hip is dislocated.  
• A dislocated hip!  Oh no!  Now, for you or me, that would really suck and be horribly uncomfortable.  But since Soren doesn't walk, it's less of an issue.  In fact, it's BECAUSE Soren doesn't walk (and has never really walked) that his hip dislocated in the first place.  Without walking, the joint does not develop properly, so his leg easily dislocated.  And it would be far more trouble to do surgery (pain, recovery, etc.) then to just leave it as is.
• However, the doctor recommended Botox injections into the muscles on Soren's thighs in order to relax them.  We saw her colleague, who did the injections.  Unfortunately, Soren's muscles only relaxed for about 2 weeks at the most.  
• So now we've been massaging his legs with Tiger Balm, which seems to help his legs a bit--and really opens up the sinuses!   
• And we are trying Rolfing for the first time to also try and help him.  I've been getting Rolfed (which sounds disgusting) over the past couple months to help my ever-aging body.  And while it's not pleasant during the session, I always feel better afterwards and am noticing positive differences.  I trust my instructor Eric and asked if he thought he could help Soren.  So Soren had his first session on Tuesday the 29th.  Eric was much more gentle with Soren.  And while Soren seemed a bit suspicious at first, he eventually relaxed and let Eric do his thing.  But when Eric got to Soren's legs (which are really for the 2nd session), Soren immediately tensed up again.  It was fascinating to watch as Eric touched Soren's left leg, his right shoulder would rise up in response.  Soren was sitting up MUCH taller afterwards, which was great to see.  So I think we're going to try a 2nd session, where we really get into the legs.
• Soren's Seizures: Haven't really changed notably.  He's on a new Ketogenic formula called Keto Vie.  We were hoping that this would help cut down his seizures, but things have remained the same.  We do think he's more alert on this formula though.  
• Soren's School:  Was rebuilt and his GORGEOUS!  Soren has responded really well to the new environment, which has lovely lighting and lots of vibrant colors.  He's been much more alert and attentive at school.
• Soren's Wheelchair:  Has worn out its brakes.  Plus Soren has had the chair for years and, as a growing boy, he's simply bursting out of it.  Now that we know about his dislocated hip, we can get a seat accommodating that, making it more comfortable for him while sitting.  So getting a new chair will be our 1st adventure for the new year.
• Soren's Height and Weight:  Soren is a big boy, weighing in at 68 lbs. and measuring 58 1/2 inches.  The most challenging thing about this is that Soren loves to snuggle, but with his legs being both long and in pain, this has gotten really challenging.  We try our best to make sure we hold him because the boy loves the love.
• Soren's Smiles:  We haven't seen a lot of smiles lately.  I've begun marking them down in my calendar so I remember.  He smiled on November 20th and on the 21st I even heard him giggle.  He had a good Christmas (no seizures!) and was really interested in the present opening.  Hopefully this next year we'll get better seizure control which always leads to more smiles.

I think that sums it up!  I'll do my best to post more often, giving updates on Soren's progress.

Amy

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!

Amy

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 care.com 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.

Amy  

Shorn Soren

Soren has always had a good head of hair.  And like many a kid, cutting Soren's hair has led to some challenges.  When he was little, I took him to children's hair salons.  But Soren didn't sit up on his own, so I would have to sit in the chair with him to hold his head up.  This led to us both getting rather hair.

Later, I took him to Supercuts or Fantastic Sam's.  The ladies there were very kind and would just cut his hair while Soren was in his wheelchair.  But they always seemed a little nervous around Soren.  It tended to be a stressful appointment for all involved--especially me.

So then I bought a pair of clippers.  I figured I'd save money and the hairdressers wouldn't look at me with pity.   I chose the #2 setting for the clippers and went to town.  But the clippers were noisy, so Soren wasn't very happy with this situation.  Which led to me not being very happy about this situation.  So then Soren starting going for long periods between haircuts.  Thus, his thick head of hair only got thicker.

During his haircuts, Soren would insist on putting his hands on his face, which got hair on his face.  He would move his head this way and that flinging himself about to try and avoid me.  The fact that I actually cut most of his hair and didn't take off an ear is a miracle.

Another problem was that after the haircut, there had to be a shower.  Talk about adding insult to injury.  First the buzzing and the hair.  Then the water.  What kind of torture was this?  But despite all the cussing and frustration, Soren was always happier once his hair was cut.

This went on for years until this past Halloween.  Soren was dressing up as Ferris Bueller.  It had been a bit since I'd cut his hair because I wanted it longer for Ferris.  But knew I couldn't actually cut it in a "style."  #2 clippers was my only skill level.  I did a Mohawk on him the year he was Puck from Glee and nearly botched that up.  So how was I going to get him to look like Matthew Broderick's Ferris?

Enter Randy Madden, hairdresser.  Randy had been cutting Moira's hair for at least a year at the same salon that I go to.  Moira loves him.  Randy is the coolest dude you'd ever want to meet.  He dresses like a rocker.  I think because he actually is a rock musician.  Moira hangs out with him and gives him crap the entire hour she's with him.  Seriously.  I've never heard a 14 year old give a grown man so much crap.  She tells him he posts too many pictures on Instagram.  She tells him he uses too many hashtags.  She basically schools him on how to be a better guy.  And he loves every second of it.

On days when I go to get my hair cut and colored without the kids, I've observed Randy cutting other kids' hair besides Mo.  Little kids.  Kids that, unlike Mo, wiggle around and really don't want their hair cut.  I figured if Randy could handle these kids, he could handle Soren.  So, for Soren's Ferris Bueller Halloween haircut, I went to Randy.  And, good gravy, I was the nervous Mother Hen hovering right by them the whole time thinking that Soren was going to give Randy hell the way Soren gives me hell.

But this amazing thing happened.  Randy, being the super mellow dude he is, wasn't fazed by Soren at all.  And Soren was completely on his best behavior with Randy.  It was like, "I'm hanging with this cool guy, Mom.  Back off!"  Plus, Randy has the quietest clippers ever, which really helped!  But Randy totally worked with Soren's wiggling this way and that and just talked Soren through the entire thing.  It was awesome.

So, I have packed up my clippers and now the kids get back-to-back appointments with Randy.  It's one less thing I have to do.  And totally worth every penny!

Amy