Not much new to report this week. The Neuro visit went as expected-- nothing new but Sam continues to amaze the professionals. ("Medically, he shouldn't be able to do the things he does"...) At home he continues to delight his parents. He just has a pleasant disposition that makes parenting a real joy 99% of the time. I will add a few pics this week but will drop the blog to once every few weeks, mostly just to post pics for you distant relatives and friends.
Love,
K

Joy

Home a month and our house is truly full of joy.

I'm sure the "Are you guy's crazy?" thought crossed many of your minds when we first told you about Sam and his medical issues. To be honest it crossed our minds once or twice - especially as we were preparing to leave for Lithuania. However, after our first meeting with him we haven't looked back. I can truly say we have no regrets. I'm sure every parent can relate.

We are at times sad when we think about the potential pain and heartache that lie ahead. But it's kind of hard to stay down too long around Sam . His joy is infectious.

Just this week Sam seemed to wrap his brain and heart around the concept that he is here to stay. Several times he smiled and said, "like house", "like room", "like a lot"....and my favorite-- "Mama, Daddy, and Sam forever and ever and ever". Another favorite, just out of the blue- he will sometimes say, "I so happy, I SO happy!" And he is--- the boy wakes up happy and goes to bed happy. We're having a lot of fun in the Huey house these days..

Next week we have an appointment with the Neuro surgeon here in Columbia. We don't necessarily expect a different prognosis but will use the opportunity to obtain a second opinion and to ask questions.

Thank you again for all your support..K

PS I will post some pics tomorrow- out of time tonight..

Pictures and the DR visit

Finally I have gotten my computer to read our camera memory card, so I will post pics more frequently again.

Sam continues to delight us every single day. He has such and easy, happy disposition. We still pinch ourselves--Is this wonderful little boy really ours???

Every day he dreams up several new projects for us to constuct out of cardboard, construction paper and tape... a fire truck, a firefighter uniform- (pictured), musical instruments, Spiderman costume, all sorts of animal masks, an x-ray machine...I think a motorcycle is on our agenda today.

On a dissapointing note, Wednesday we had an appointment with the Orthopedic clinic at Medical College of Georgia. All the Drs were amazed that Sam (in person) was the same child whose X-rays they had reviewed. They marveled at his intellect and at Sam in general. We had been hoping for a surgical fix for Sam's hips because they do not bend very much. But this is not possible. And Sam's lack of hip bending places more pressure on is back. The surgery that he will likely need for his back is very risky so we will postpone that as long as possible. We also learned the extent to which Sam is susceptable to kidney/bladder infections and the possibility of kidney failure - overall a very dissapointing visit..

Sam was an absolute trooper the entire time. His phrase of the day was ' "No crying in baseball" or sometimes, "No baseball crying." This phrase was accompanied by his exaggerated arm motions to emphasize the "NO" in "No crying"....He continues to charm everyone with whom he comes in contact.

Sam introduced himself to one professional as Benjamin (his friend) Martynas Huey...

So next on the agenda are Neurology and Urolgy appointments. Tricare, our insurance company, made a mistake and now we have to wait several more weeks for these appointments. This is especially dissapointing as the urology appointment is critical. I can forsee many more Tricare battles.

We will be ordering a newwheelchair that is custom molded to fit Sam's back and his hips. I can not stress enough how important it is that we get this right. Please pray that God directs us to a vendor that can make a molded seat and back rest that works for Sam. This is very expensive and we may only have one shot to get it right....

SO re prayer requests-

please pray for the seating system,

for a quick urology appointment,

but most of all pray for Sam's little heart --that he will come to know Jesus sooner rather than later--

Also please continue to pray that his father and I are good stewards of this precious gift that is Sam...

blessings,

Kristin