Wednesday, September 30, 2009

October is Down Syndrome Awareness Month!

Did you know that? I'll bet you also didn't know...

*Down Syndrome is a genetic condition that has an occurrence rate of one in every 800 - 1,100 live births.
*It affects people of all ages, races, nationalities, and economic levels.
*Down Syndrome is one of the most frequently occurring chromosomal abnormalities.
*Down Syndrome's most common form is Trisomy 21.
The common physical characteristics are: low muscle tone, depressed nasal bridge and small nose, upward slant to the eyes, abnormal shape of the ear, single crease across the center of the palm, and large tongue in relation to the size of the mouth.
The common health concerns are; congenital heart defects, increased susceptibility to infection, respiratory problems, obstructed digestive tracts, childhood leukemia, shortened life expectancy and autoimmune problems.



I'll bet you DID know that we are the luckiest family in the world to be able to celebrate this wonderful 'occurrence' in our family!! Happy Down Syndrome Awareness Month - if you know a person with Down Syndrome, you can't be anything BUT happy!!

Sunday, September 20, 2009

Update on Alex

It's been a long 2 weeks, but we really don't have anything to show for it! Alex is now in a wheelchair. That sucks! He's quite the trooper, though. He tries to do things like get in the car by himself, or in and out of his wheelchair or bed by himself, and sometimes he can do it! Other times, he needs someone to lift his right leg up and in. We did try crutches; NO GO! At least he's not in horrendous pain anymore. That's a blessing. We just wish we could find out more information. We can't get in to see the rheumatologist (to check for arthritis) until October 12!! It's just a waiting game until then.

Sunday, September 13, 2009

Whazzup??

I don't even know where to begin. First of all.... I got to babysit Morgan yesterday!!! Not that it was hard or anything; she came asleep, she stayed asleep, woke up and ate, visited GG and Grandpa Scott for 20 minutes, then her parents came back home. I told you before, and I'll say it again... my grandchildren are PERFECT!!

It's been a long couple of weeks for Alex. About a month ago I noticed that when he woke up in the morning he walked really stiff. As the day wore on he loosened up, but it made me start to pay more attention to how often it happened. It slowly progressed to limping in the morning, and after he had been sitting for a while. Then it got to where he limped more than he didn't. Last Sunday a handful of other people noticed it, so I knew it wasn't just the paranoid mom in me. Of course, the next day was Labor Day so no doctor was open, but I noticed Alex dragged his right leg whenever he tried to run. He went to school the next day (with a note from paranoid mom asking them to let him take it easy) and the teacher called (Ms. Jerrard is awesome!) saying how bad he limped ALL day. Then to get off the bus, my happy-go-lucky kid had to slide down the steps on his bum. Couldn't make the big bus steps with his knee!! Of course, Alex is a little on the grumpy side - which who wouldn't be after being in pain this long- but all in all he's still happy Al.

Tuesday late afternoon - first doctor appointment. (Another incredible person - Dr. Ellie Brownstein - we're on first name basis with Ellie!) Took x-rays and blood samples to check for swelling of the tissues. X-rays came back with fluid on the knee, but bones look fine. Whew! No blood test results, yet. I keep him home from school Thursday, since the teachers call me Wednesday saying Alex can't take it any longer. We keep his foot elevated, ice pack it and about every 2 hours go for a (very) slow walk around the circle just to keep his body moving. Seems to be helping?!?

Thursday evening; during our slow walk, Alex decides to go say hi to Grandma Kathy and Grandpa Scott. Angel (our dog) thinks this a fantastic idea, and plows over Alex to get to the door first! Alex went down - directly onto his sore knee!! Weeping and wailing and gnashing of teeth followed suit. Oh, the pain! Oh, the agony - and that's just my perspective of having to watch a child be in pain! He wouldn't put any weight on his foot, so we put him to bed.

Friday morning; still won't put pressure on his foot. Complaining ALL the time (no more Mr. happy-go- lucky!) Goes to Dr. Carbone - his new Dr. Still doesn't have blood work back, so 'keep doing what you're doing, and I'll call you back with more info when I get it.' He did give us a different anti-inflammatory since Ibuprofen every 6 hours was upsetting Alex's stomach. Later got the blood test results back; they look ok.?. We rented a wheelchair because he's just too darn big for us to be lugging him around in the baby stroller, or even trying to carry him. I certainly can't do that anymore, and it's getting hard for everyone else too.

Friday night - I'm getting too old for this! An all-nighter of rubbing his knee, trying to calm him down, trying to keep him comfortable. Meds aren't doing a thing! He is having leg spasms and with every twitch the pain is horrific!! He even asks me to take him to the hospital!! We figure out he's more comfortable either sitting - which isn't too conducive to sleep - or with his legs bent. Finally at 5:30 in the morning, my sweet, little man falls asleep. He slept until 10:30 - and that's with me waking him up to give him his meds, test him and give him his shots at 8:00!

The next step is just wait for the anti-inflammatories to do their stuff, and if by Wednesday he's still in a lot of pain, we'll go see a rheumatologist to check for arthritis. Kids with Down Syndrome are more likely to have incidences of auto-immune problems; diabetes , and thyroid problems, which Alex has both, so why not add rheumatoid arthritis to the mix??

In the meantime, trying to find our happy Al and keep him comfortable without babying him. He did sleep much better last night (the dr. really medicated him for nighttime) and he's trying to move a LITTLE bit more. Poor guy! Good thing he's tough!! Even better that we like him!!!

Wednesday, September 2, 2009

Our first granddaughter!! 6 lbs. 14 oz. / 19.5 in.


GRAND BABY #2, FIRST GRANDDAUGHTER!! I'M A LUCKY LADY!!