Friday, October 8, 2010

Seriously--where does the time go?

 Chewie finally lost a tooth
Yes, they are goofs.


Well, we finally have some answers on Chewie.  Following our primary doctor's suggestion. Chewie saw a neurologist--who questioned some of his behaviors.  Off to the head shrinks--who decided that yes, mom is probably right and Chewie is a year younger and he is ADHD.  Chewie started on guanfacine--which quite honestly is a fricking miracle drug in my opinion! They chose a non stimulant ADHD med since his prenatal exposure is unknown.  In 3 weeks--huge improvement.  He can concentrate, he can sit, he can follow instructions--he LISTENS and comprehends.  MIRACLE!!!
Next up, due to the questions on his physical exam, MRI.  Of course, sedated--heck I couldn't even stay still for that long.  Chewie was pretty good, until we got into the MRI and they started on the sedation.  Quite clearly through the tears and crying "I hate this place!!"  Yep, Chewie takes after his mom and certainly can express his opinion.  Of course, saying he hates the place I work probably isn't a good thing--but oh well!  That was Wednesday.  On Friday, while I was applying the second coat of sealant to my driveway, I got the news that literally knocked me over.  Chewie has a chiari malformation--basically the "tonsils" of his brain are hanging in his spinal cord.  His is small--but still something that we will follow up with neurosurgery.  There are also some questionable areas in his parietal frontal lobe.  When Ted and I saw the neurologist on Tuesday--she eased my mind.  There is the possibility that this is something progressive--as in his neurological status will start to go downhill.  However, her feeling is this is related to either an infection--which he is recovering from---post trauma--which is healing--or prenatal exposure to drugs.  Do we know?  No.  I personally think it could be both infection and trauma. So, where do we go from here?  Neurosurgery consult on Nov. 17.  Another MRI in a year or so.  We're waiting to hear back from Neuropsych. for an evaluation.  Continue with the head dudes and maybe increase the guanfacine.  Keep plugging away.
In the meantime, Julia broke her arm playing soccer.  Complete break through the ulna.  Of course, we didn't know until 9 days after the break.  She didn't complain of pain or anything--until 7 days later.  Then there was a small bruise and bump.  So, off to the doctor to double check.  He was surprised too.  She's going to have the bone graft done Dec. 22.  Merry Christmas to you Julia.  We decided then since she'll have 2 surgical sites and is going to need to take it easy.  Hell, I'm having hard enough time keeping her from being wild now.  If her arm doesn't heal probably--she'll need a surgical repair on her arm.  Anyways, this will give me the chance to keep her calmed down for a good 10 days.  HA--I'm hopeful if nothing else!
Rauan--start of the palate expansion.  We'll see the orthodontist on Oct. 19 and start the plans for that.  Then we get to start the running back and forth.

In the meantime, Ted and I keep going.  I'm am hoping to start taking night call at HospiceCare.  More money and won't interfere with all the kid's needs.  The day/pm rotation as a pediatric nurse is working out nicely.  Sadly, while I stopped out for a drink with coworkers last Sunday night, someone decided to shoot at our house--well we can't prove it--but got a large hole in my kitchen window--my new Anderson thermopaned casement window!  So, now we wait for a new sash to arrive.  I was all ready to call a realtor and then take a loss on the house--but Ted did some research and this has even happened in some of the super nice neighborhoods in Madison.  I know that it can happen anyplace--even a small "safe" town---but still it pisses me off.
So, that's our current update.  Better--but busier then ever.  Needless to say, I'm tired--but managing.

2 comments:

Shannon said...

Good Grief! I don't even know what to say about any of that! Hugs to you, sister.

Mala said...

Sooooooo, what do you do in your free time?

Ugh. You guys deserve an award.

Sorry I didn't get a chance to call you. I...I... I have no idea what happened. What day is it?