Wednesday, April 13, 2011

Spring News

Hey everyone-- just saying hi. Khyle had a weigh-in about 2 weeks ago, he's 28lbs now and is 33 inches tall! A very big boy & don't I know it trying to lift him up & down the stairs daily! We also visited with the neurosurgeon Dr. Keating at Children's last week for a check-up. Not too bad. There is some bulging on Khyle's right temple that Quincy & I have been worried about. Keating was not so worried but ordered us to get a CT scan anyway. He thinks it could be tissue growing over the plates or just a bruise. We'll let you know the outcome of the CT.

Therapy is still going well. We slowed down a little because everyone in the house was sick with colds, coughs etc. but now we're back on track.

We are wishing it would warm up. This is no kinda Spring I'm used to, 48 degrees today. I think that says it all. But we are missing the outdoors, even Khylie boy would enjoy some sun I think.

As always keep us in your prayers. Thanks all, love the Parkers with an extra special kiss from the Warrior.

Saturday, February 26, 2011

Good Therapy Session


We had a very good therapy session on Wednesday with Khyle's PT Libby. Khyle was very alert and that made all the difference. We put him up in his new 'Wombat' chair which positions him nicely. Because Khyle's muscle tone is so poor he needs lots of help sitting up & holding his head up. All the braces, slats & belts on this chair keep him propped up perfectly & allow him to turn his head freely.

We pushed his tray up to the chair & put some toys on it for him to handle. We get good responses from the 'Switch' toys. They are recordable devices that Khyle has to press a button in order to activate the sound. On one I am singing 'Twinkle Twinkle', on another Daddy plays guitar. If Khyle wants to get the reward of hearing Mommy or Daddy, he must press the button himself. It teaches him cause & effect and we see a small glint of curiosity in him when he gets it right.


We are very proud of our brave, strong boy who works so hard at the simple things. We are astounded by his perseverance and challenged daily by his ferocious will. He is after all, 'Khyle The Warrior"!


KHYLE AT PLAY

video

Sorry I started taping sideways but bear with it, I get it upright halfway through. Look how excited Khyle is playing with Mommy & his toy. This one vibrates too!

Thursday, February 17, 2011

Finally An Update


Hi friends of Khyle! It's been a long time since I've updated this page. Mostly I've been just dropping little blurbs on his Facebook page and we've kind of been taking a long breath post-surgery.

So here's a fun photo slideshow of the beautiful boy. Enjoy. He is healthy, gaining weight, doing well in therapy. Will share some 2011 plans with you SOON.




Here we all are just getting our Christmas morning started. Khylie Boy is dressed in his super cute Diego hat.



Toy Story & Cars themed clothing were the boy's main gifts. And he looks gorgeous in everything!



This another chair, the Wombat, that was given to us by a lovely family in Virginia. God is good! And thanks Libby for the hookup!




Enjoying therapy. We put toys on the tray for him to play with. Libby (PT) is turning his head, Khyle still needs to strengthen his neck. This tummy position is good for him because he is on his back a lot.



Here Khyle is in tow at an apple orchard back in October. He was right out there picking apples :) with us.

Wednesday, September 22, 2010

Great PT Today!

Khyle had a great physical therapy session at home today. We have been working with him in a new (borrowed) chair called a Rifton and it helps to keep Khyle sitting firmly upright. It also has a tray on the front that is perfect for toys and such. He went 40 minutes in the chair today engaging with me & the therapist, Libby. Yay Khylie boy!!




Here Khyle sits unaided on the floor leaning forward--NO ONE IS HOLDING HIM!! He lasted about 4 minutes then got annoyed and I picked him up, but he did NOT fall. GO WARRIOR!!






Sunday, September 19, 2010

September News

Khyle is continuing to grow. I can hardly lift him he is so big & that is a very good thing! We started with his new physical therapist Libby & we are doing well. We are trying him in a special chair called a Rifton that helps him sit upright and gain more trunk control. He seems to like the chair and does not tire easily in it, which is very good. Our PT goals are head control, upright sitting and increased mobility.

Coming up we will revisit the GI/Nutrition clinic and also see neurosurgeon Dr. Keating for a 3-month checkup. Also we will go for a general visit to the Craniofacial Clinic and check in with ENT.

Still searching for a pediatrician & home medical supplies provider. I hate the feeling that these medical supply companies are out to fleece us but sadly that is true of many of them. Online I can buy a box of feeding bags for Khyle's pump for about $250. The supply company we were using is charging $560 for the same case of bags!? Unfortunately we have not found another company that is in our network but must keep trying.

Maya is in first grade--yay! and is loving it. The fall weather is so beautiful, cool but sunny. We hope to go for a ride in the Shenandoah Mountains to view the changing of the leaves. Planning to stay in Maryland for Christmas and this does cause Maya some grief but we hope we can have lots of fun. Praying for no blizzards.

Love to all the family & you wonderful friends who keep us so encouraged!! We are blessed!

--check out 'Khyle The Warrior' on Facebook too