New Look!

Decided to switch things up a little, and re-do the site. That isn't the only new look going on-Mr. Connor has a new haircut that is simply adorable! I tried to cut it, and it ended badly...luckily our friends at Pigtails and Crewcuts were able to repair my mistakes :) It is pretty short in the back, but actually really practical for him since he is outside so much playing in the gorgeous weather we have had lately.

He is doing good, still having some off and on pain in his legs, especially at night, but otherwise doing well. Been working hard on "basic understanding" and today he followed a direction. I told him to go throw something away-and he did it for me, and later for Nini too! I was so thrilled for him! We all clapped and made a big deal over it, I can't wait to tell his speech therapist when we see her again.

Next week is scan time again, and Monday will be the extra tough day for Connor. The contrast is SO awful, and he is at a tough age for forcing him to drink it if he doesn't want to. So, we will try our best, and if we have to, we will use a syringe to force it down him-anything to avoid the horrors of the NG tube like last time. It has to be given SLOWLY, over two hours, so it is hard to see him suffering that long. We are praying for an easy as possible time for him, good results, and looking forward to moving to the 6 month scan schedule! Woo-hoo!

He is doing just wonderful on the high-dose steroids, we are very pleased with how well the drugs are controlling the jerking movements. Even the ones he was experiencing with his lungs are barely present now. The mood swings and achy joints are not fun side effects, but it could be MUCH worse, so we are counting our blessings.

As always-thanks for checking on us and Connor. Please keep him in your prayers next week for clear scans and also for Ryan, Stacy, and Samantha to have a smooth week being shuffled around a bit, while we go back and forth to Atlanta. It is rough on the whole family and they love Connor so much, I think sometimes what they imagine happening to him at the hospital, is worse than the reality...but it is next to impossible to truly help them understand that although it IS rough on Connor-it is also all he has ever known. So while they might get freaked out by a simple shot-that is a piece of cake for Connor...he doesn't like it, but he DOES accept it to a degree, and although he cries over painful procedures, he also is able to bounce back quickly and go about more fun things, like checking out favorite toys at the clinic. To him-that is his playground, as well as a hospital.

Love,
Debbie