Tuesday, August 20, 2013

SDR approved!

Four days, 1800 miles, and a doctor visit later, we have our answer.  Rhys was accepted for his SDR surgery!  We are so very excited, but nervous as well.  This is a big deal!  It's invasive, but our doctor has modified the procedure so that it is as minimal as possible.  If you read the link I provided in the previous post you will know that they remove part of the bone on the spine and snip the problem nerves.  I'm crazy stressing about this, but we know it's the right thing for Rhys.  In fact it's probably his only hope of being an independent walker.  Dr. Park thinks Rhys is spastic triplegic, which means three limbs have issues.  I agree with this.  His right arm has always lagged behind his left in terms of ability and dexterity, but he it's not the typical heavily restricted use you'd normally think of.  Dr. Park thinks this surgery will allow Rhys to sit unassisted in all position (holy cow I can't even imagine life with Rhys able to sit without help), remove the scissoring when taking steps, and also could improve his right arm, speech and please oh please his eating.  About four months after his SDR he will have lengthening procedure called PERCS.  The combination of these will hopefully give Rhys the ability to walk with his gait trainer in a purposeful way, instead of only at therapy.  Our expectations aren't ridiculous, and we don't see this as a miracle cure.  If Rhys were only able to gain unassisted sitting and no spasticity it would be worth it.  For him and us.  It's hard to lug 33 pounds around day after day.  But we will continue our five-a-week therapy routine, and work really hard for something more than that.  My goal is for overall improved quality of life for Rhys, so I will take whatever we can get!  Timing right now is up in the air, but we are shooting for October or November.  It would be far more complicated to take Zoe and Beckett with us, not to mention Cody and I would be tearing our hair out having to go between the hospital and hotel with those two, so we're trying to arrange it where the two littles can stay behind.  Surgery lasts 3-4 hours, and usually requires a five night stay.  That's all we know right now, but we're excited to get this process started.

Sunday, August 4, 2013

summer 2013

Last day of school! Zoe often gets up in time to walk Rhys to the bus with me.  In the apartment we have to walk a short distance to get to the front office.  She's intrigued by the bus, and Mr. Guy the Bus driver.  Every morning she walks out with me she has to walk up the steps to the bus and tell the other passengers high.  It totally makes her day and she talks about it all morning.
We are considering SDR surgery for Rhys.  Click here if you aren't familiar.  This is something we just recently learned about, sadly not from one of Rhys's doctors (that's a story for another post), but another sweet CP mom where I've gotten so much of my good and useful information.  So I saw it, read about it and became obsessed with learning more.  The medical community is kind of divided on it, and we still have major reservations about the procedure, but we know the possibilities could be amazing for Rhys.  We went through the application process, had to get specialized x-rays of Rhys's hips (that us below in the dressing area waiting on the x-ray tech!), and sent in our paperwork.  We have a consultation in a few weeks in St. Louis to see if this procedure is a good fit for Rhys.  Yes, doctors in Houston do it but (a) not a single one of his doctors has mentioned it as a possibility, which irks! and (b) this St. Louis doctor is the best in his procedure.  It's all he does.  So off we go!  Please think of us, we're excited and nervous, but anxious to pick this doctor's brain.

Sweet Zo is a little fashionista.  She wants to pick out her own clothes, change multiple times a day, and only wants to wear dresses.  I can sometimes get by with a tunic type top, but she really isn't interested in tees and shorts.  Sigh.

And she's obsessed with sunglasses!

Sweet baby Beckett!  He turned two in July and Rhys turned the big five!

Zoe just completed her float test at swim class.  The goal is to teach them if they unexpectedly fall into the water to get on their back and float to the edge of the pool so they can pull themselves out.  The test is one test, three weeks in a row.  They have to float in street clothes and shoes for five minutes, or until they reach the edge.  Zoe did awesome her first two tests, but last Friday she had to wear jeans.  She doesn't like jeans.  I should have tried to figure out another option, but I wasn't thinking she'd be so angry about it.  She almost failed her float test because she was so ticked off!  But she didn't!!  So proud of Zoe!

And lastly, here is our casa!  Less than two months to go and boy are we ready!  The apartment is tiny, and while it could be worse, we are ready to get the heck out of here.  The roof is on our house, the inside has drywall and is taped and floated.  The texture should be on by the 7th or 8th.  They will hopefully start bricking this week.  Ours is the next house in line, so hopefully tomorrow!  After that it is all interior work.  Soooo excited!