Thursday, July 21, 2011

Encouraged

Last week, Clayton had his one-year check up with the neurosurgeon in Memphis.  Thank you, Lord, for keeping his brain in good order for this whole past year!

While we were there, a routine MRI was performed.  Clayton hasn't had an MRI in years; since he was a baby in the NICU in fact.  His ventricle size has since been monitored by CT scans.  While this gives a clear picture, it is exposure to radiation, which we all know Clayton gets too much of his share anyway with all the other x-rays he has . . . at any rate, I appreciate that this clinic thinks enough of its patients that they try to minimize their radiation exposure.  I didn't appreciate them not reminding us about the sheer terror the LOUD, OBNOXIOUS sounds would cause my child!  He was absolutely terrified!  And to be honest, I think it even unnerved Brian and me both!

After the drama of the actual MRI, the rest of the appointment went great.  Clayton was so excited to see Dr. Einhaus and just about jumped out of his chair each time he caught a glimpse of her in the hall.  I think he knows intuitively how much she helped him when he was sick.  He just thinks she is the greatest thing!  She was glad to show us the MRI--it's always amazing looking at an image that is so obviously abnormal and then glancing at your child across the room to see him doing wonderfully in spite of it.  (For those who love the details:  Clayton still basically has slit ventricles, but praise God he has long since ceased showing the signs of slit ventricle syndrome.  He also has a small amount of fluid between his brain and skull because his brain actually shrunk last year when all the fluid drained out of his ventricles.  That fluid is definitely not normal either, but Dr. Einhaus assured us it wasn't an alarming amount.  She said that hopefully overtime his brain will fill up the space once again.)  Soooo, again I say REJOICE!  Despite the obvious abnormalities, Clayton just keeps on truckin'!   
Perhaps the best part of the visit was when Dr. Einhaus started talking to us about the spasticity in Clayton's legs.  She called in her partner to talked to us about options.  This was refreshing since we've never been able to find a doctor in Little Rock who will discuss any option but a baclofen pump.  Brian and I have always been against the baclofen pump for various reasons (which I won't go into now), but no one has ever wanted to educate us on any other procedures.  I've done a ton of reading online, but that never compares to talking to a real live doctor about a subject.  

The doctor examined Clayton at length and immediately surmised that we had made a good decision to stay away from the pump.  Said Clayton was definitely not a good candidate for it (just another example of parents' intuition holding true).  He talked to us about a rhizotomy and again concluded that this would not be a beneficial procedure for Clayton.  Clayton is so weak.  The main problem with any procedure is that if you do take away his spasticity, you've taken away the only "strength" he has, even if it is in effect a false strength.  Without his high muscle tone, he cannot even begin to stand on his own, or even sit indian style by himself.  Take that away with a rhizotomy, and he becomes one big limp noodle!

In the end, the doctor recommended that we see the orthopedic doc that he works closely with to discuss other options, including PERCS.  (I've been asking the docs at ACH about this procedure for a couple of years with no real answers).  We have no idea where this is going to go.  We may get there and they tell us that Clayton isn't a good candidate for PERCS either.  BUT, it is so encouraging to at least be discussing something new!  And if that won't work, maybe they'll be able to offer something else.  To quote Clayton's PT:  "He's a hard case!"  He has everyone around him puzzled and stumped as to the next treatment.  He is growing and his legs just get tighter and tighter.  And the monkey in the wrench is that his trunk is the complete opposite:  loosey goosey!  (This is why global treatments like oral meds don't work for Clayton--what's good for one is bad for the other).  

It's definitely time for a new set of eyes to examine Clayton.  And hopefully that person/persons will be able to see something that other docs have been missing.  It sometimes takes that new looker to come on the scene in order to point out a different view . . . we're ready!

6 comments:

Lesle Alvarado said...

I'm so glad to read that Clayton is thriving in spite of his physical issues. It must be so frustrating sometimes not knowing what to do next. But hopefully talking about other therapies will spark new ideas that will help him. :hugs:

Patti H said...

so happy to hear Clayton has another option. I think it is so good that a new set of eyes are looking at him. Glad that the doctor visit went well.

Pop said...

Very interesting read on the PERCS
link. Clayton needs all the options he can get.

Love, Dad

Amy said...

I have seen great things come from PERCS. I pray that it is a suitable option for Clayton and if not that God will direct the intelligent minds that you see on something that will be perfect for him. I totally get everything that you said in your post, as Emma (age 7) is much like Clayton.

But, praise the Lord for all the wonderful progress that he has made in spite of the odds. God is so faithful.

anna said...

HI Ashley my son has high tone muscle due to cerebral palsy ;and we did percs here in NJ with doctor who start this procedures (laser not knife)and that decision we made was the best we ever could do to help him ,lots of people try tu keep him on botox and alcohol block and I took the chance and said enough its amazing what he can do now after percs .Definetly look for it wish you luck and I love your boys the are so cute.

TherExtras said...

The daughter of this mom blogger had PERCS and she is a prolific blogger.

http://elenadoodle.blogspot.com/

Barbara