Thursday, December 31, 2015

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.