Life Is Good...but SO Full

LJ's New Shades

We're here.  It has been a busy April.  Nothin' major to report.  Just the usual with the two kids, therapy, doctor appointments, after school activities, IEP meetings, traveling etc...

Lewie is gettin' good at driving his power chair.  No more banging his head.  He sleeps thru the night every couple nights or so.  The trick was a combo of 3 mg extended release melatonin & a regular 3 mg tab of melatonin at bedtime.  But...it could also be due to the addition of a new medicine LJ has started taking which has a drowsiness side effect.

We met with a new Pediatric Neurologist at the beginning of the month.  And she gave us lots of nuggets of information.  She recommended we try Baclofen for LJ's fluctuating tone and muscle discomfort.  NIH says Baclofen can be used to act on spinal cord nerves and reduce the severity of muscle spasms.  Dr E also referred to his particular type of CP as "Choreoathetotic".  We'd heard he was dystonic but this was a new term to us.  I googled it and the definition I pulled up was "a form of cerebral palsy characterized by choreiform (jerky, ticlike twitching) and athetoid (slow, writhing) movements."  Sounds sorta accurate but its just a label and I've dropped those. 

The Phsyiatrist we see for his physical medicine/rehab wants to try another Botox procedure (for LJ's right wrist flexor, right pec major, and right calve) but the neuro thought we might have longer term progress with the oral medication. So rather than put him under anesthesia again, we will see if the Baclofen helps. He is on a low dose and we may consider increasing the dose with time.  In the meantime another side effect is seizure, so we are closely monitoring him.

The dentist reported that LJ has no cavities! The Developmental Pediatrician was also a good visit.  We discussed LJ's sleep issues. He prescribed a sleeping medication if things get particularly bad and the melatonin doesn't help enough.  But we really have tried not to use it.  It's called Clonidine and it's typically used to treat high blood pressure but drowsiness is a side effect. The Developmental Ped also said another medication to consider down the road might be to treat anxiety.  He could see that LJ has lots of worry and given his overall picture it might help reduce his anxiety.  Rather than Ativan though he would like to see him on Intuniv for antianxiety/antidepression.  When he's a little older we may explore a play-based psychiatrist for LJ have therapy and determine what is the right route. 

Ophthalmologist says Lewis' eyes look healthy, nothing wrong with the integrity of the actual eyeballs.  However, I had sent her a video because his right eye was overactive and floating up a lot. She had us come in for an exam.  She says it's not uncommon with kiddos who have had strabismus early on.  She calls it "Dissociated Vertical Deviation" or DVD.  Here is an interesting article outlining how DVD has eluded explanation for over a century!  The doc advised that this is really more of an aesthetic thing and that while surgery would indeed correct it, the problem never goes away and would need to be re-operated on in the future.  When given the old "What would you do if this was your child?" she responded that she wouldn't operate until it was cosmetically necessary or LJ had formed an opinion on it.

In other news, the lil is farsighted!  He needs glasses.  He has trouble seeing things close up- which starts to make sense regarding his iPad and inaccuracy clicking buttons in PQ2GO. He chose his own glasses and very much enjoyed shopping for them.  It was between round blue ones or squoval (squarish-oval) green ones.  At one point he got so excited he knocked my bottled water all over the display.  Fun times.  At least it was only water.

I had a getaway to NYC for a night to celebrate Nanny's birthday.  Josh manned the fort.  I had the most amazing time eating good eats, laughing lots, celebrating my mom, sleeping in late, a nice little massage, and a play off Broadway.  The kids were all adorable when I got home.  The whole fam damily went home to Florida for my nephew's bar mitzvah this past weekend.  He did so amazing.  Didi and Bop came along for the fun.  We had lots of bribing going on to get big brother to wear his jacket and tie for the festivities.  First it was a choice between wearing his jacket or his tie.  But then just to get him to wear one, we negotiated for Nate not to have to wear his dress socks.  In the end, the boys looked like little mini men and we had such a wonderful time with old friends and family.  But trips are always lots of work.

On one final note, we have some bittersweet news.  We have decided to sell our house and look for one that is more handicap accessible or can be made more accessible.  We've chosen the end of the school year to put our house on the market so that we can use the summer to find a place that works for us, hopefully very close to where we are now.  But its been crazy, crazy, crazy busy trying to get the house ready to go on the market.  I hope you all are not as pooped as I feel after reading all of this.  That's my story and I'm sticking to it.