Special Olympic's torch run

Both grand babies were asleep, so TJ took Alex on a little outing. The Special Olympics torch was running it's last leg today and part of that was in Sandy. They were all policemen /women and they had stops throughout the valley, including Sandy City Hall so TJ and Alex were there to see it AND...

...Alex got to hold it! What an honor!! Hopefully when he's recovered he can participate in an event.

A little 'Alex humor' to share; one of the officers came to shake Alex's hand and Alex said,

"Look at his nose! It's big!" Of course his speech was perfect. Thank goodness the gentleman said, "I know! It's different. It makes me look unique!" Then he introduced himself - Ish. To which Alex replied, "That's a weird name!" Leave it to Alex!!

Elder Mark Johnson

This is one of Alex's best friends - Mark Joseph Johnson. (Mark's dad is Alex's other best friend!!) Mark is leaving today for a mission in Spain for The Church of Jesus Christ of Latter-Day Saints. He will be a fantastic missionary, and we are so proud of his decision to go on a mission.

Mark has always been a good friend to Alex. He seems to know when to say "knock it off" or "way to go!" at the appropriate times. Mark has been a big help through this whole hip ordeal; he took Alex laser tagging before the surgery and pushed him around in his chair, and before we got a ramp up our front stairs Mark was always available to help me get Alex in and out of the house. And this past week he has come over a couple of times to be a distraction for Alex, and give me a few minutes to put dishes in the dishwasher, or feed a baby.

Mark is only 19 years old and is taking 2 years out of his life to serve the Lord in Spain, but he knows - and I know - that he will be greatly blessed because of his service of teaching those who want to know more about the gospel. He will learn to love the people of Spain as well as their culture and history and in 2 years he will consider Spain to be his home.

We are so glad we live across the street from Elder Johnson(s) and that Alex has such great friends!

A nice day for a picnic...

Today was the first day that Alex and I ventured out in the car without Mike's help, and we did great!!

Mike went with us last night to Walmart to get Alex's haircut - hence the reason he looks like a Buddhist monk - and today Alex and Brendon and I went to Al's school to see his classmates. When we got home, it was such a nice day we ate a picnic lunch outside.

Let's hope for more nice days to follow!!

The mystery....?

Today while we were eating lunch I asked Taylor what was wrong with her hair. I said, "You have a short piece in the back."

"Maybe I burned off a little with the blow dryer." she answered.

"No. I don't think so. You might want to check it out." I replied.

"AHHHHHHHHHH!!!!" she yelled very loudly while the rest of us just laughed in the kitchen. It's one of those things you have to laugh at or you would cry.

She has no idea how or when it happened, but it is definitely not just a few hairs that got broken off with styling. I think she is offering a reward for anyone with information to the whereabouts of her chunk of hair. Watch for upcoming Unsolved Mysteries shows for any details I may have left out.

I think our lives have officially changed!

Not that we had a boring life, or even an uneventful one, but check out the picture and see what I mean by our lives have changed.

Yup. That's our oldest granddaughter opening a drawer and getting into things. I had Oakland in the high chair and was feeding her while Morgan was toddling around in the walker and then she discovered this thing opens, and WOW! Treasures!

I guess it's time to make a drawer filled with stuff for them to play with in it, and lock all the others. The only problem with those locks are I have a hard time opening anything with them on it.

Hey!! That might help the diet!!

Look mom! I'm on my tummy!!

Alex is doing so good!!

Here's a picture of Alex just chillin' in his bed, playing with 'guys'. Notice he's on his side! He rolls all over the place. He is getting better at helping me help him; he slides to the edge of the bed and helps move his body to the wheelchair, or from the wheelchair to the bed, he helps with toileting, and he's getting better at eating without my help. That sounds funny, but his cast goes so high up on his chest it's hard to see past to get the food if his plate is sitting on his stomach, and if I put the plate up on the cast on his chest, it sits above his head and he can't see what he's getting. Josh made a ramp for the front steps for me because with this added extra weight of the cast, and the extra length of the wheelchair (it has to recline to accommodate the angle of his cast), I was having a hard time getting him in and out of the house. And I think the most amazing part of this to me is he has had NO pain meds. Not even any Tylenol. This kid has such a high threshold of pain!!

Now if I pan back a bit in the picture, you will see Alex's 'bedroom' is now in our living room! His wheelchair is so long it won't make the corner into his bedroom! So, we've officially become white trash and have a bed and dresser in our living room! We brought up a TV from the basement that sits at the end of his bed so he can watch movies or play video games, and I emptied his dresser then moved it into the living room so I could put toys, markers, notebooks and coloring books in it so even though we are white trash, we can be tidy white trash. I'm sure every day we will make adjustments, but so far so good!

Now we just need to figure out how I'm going to get him in and out of the suburban to doctor's appointments!!

You look mah-va-lous!!

It was time to wash his hair! We've done the sponge bath routine, but check this out. You put this shower-type cap in the microwave for 30 seconds, put it on his head and rub gently. That's it! No rinsing, or extra ingredients, just the warmed shower cap. It has shampoo and conditioner in the cap and neither needs to be rinsed. Amazing! And now his hair is fresh and clean!

WHEW!!!

It's done!

Not only is the surgery over with, but Alex is already home! He did so well!

We checked into the hospital on Wednesday afternoon, ate dinner there, watched TV, he played some video games and I answered a thousand questions about his diabetes, his meds, his - well, what didn't they ask about? It was also his first night wearing his CPAP machine....

He looks kinda loopy because he was. Literally 2 seconds after taking this picture he fell asleep. He slept great and didn't once try to take off the mask! Maybe it's because I told him he looked like Luke Skywalker. Yes, I'll do anything to get him to do what he needs to do!!

We woke up early and more doctors and more nurses came in. One doctor needed to verify which hip they would be operating on and wrote 'YES' on Al's hip. Alex thought that was the funniest thing ever, so we had to take a picture!

What they ended up finally doing is taking out both of the screws, putting in huge, new screws, drilled holes in his growth plate to hopefully stimulate bone growth, then casted him. If this doesn't work, his next surgery will be 90 times more intense - that's the doctor's words!

Alex was in surgery by 8:30 and out by 11:30 and back to his room by 1:00. And ate everything in sight by dinnertime. I'm not kidding! He started off with a Popsicle, moved directly to applesauce, then chicken noodle soup, then chicken nuggets and french fries. AND he wanted more!!!

Yes, that is a black cast! And yes, it goes from nipple to ankle. Let me clarify, it is around his whole torso, but only down the right leg, so the left leg and "other" areas are open. They gave him a couple of cute briefs that snap down both sides. Quite ingenious actually. But we'll have to make more!

He thought the cast was quite cool that first few hours, telling everyone he has rock-hard abs and that he's like Iron Man, but when it came to bedtime, it was a completely different story; "Take it off!!" "It's too big!" "It hurts me!" Yeah, we drugged him. I also let him move around to get himself comfortable, and that seemed to help instead of us trying to manipulate his body where we thought it should go. I didn't even try the CPAP on him - I figured the cast was enough to get used to. But he slept through the night once he fell asleep and woke up hungry. I got him some waffles and sausages and when the docs all came around for rounds there was no question he was going home that day. He just was doing too good! They gave us a loaner wheelchair, and I immediately took him for a walk. I HAD to take a picture of him in front of some very famous Shriner's........

I had no idea Sully was a Shriner! (These statues are in the entry to the surgical area and even though it wore Alex out, I got my picture!) He then slept for the next 2 hours while I packed up and got all the paperwork done. Mike helped us get in the car - thank goodness! I'm not going to be able to lift this lug. He's 87 lbs, and then add that huge cast.... awkward!! When we got home, we tried to get him down the hallway to his bedroom, and guess what? The chair is too long to make it around the corner of one door, and too wide to go in the other! So, Alex is camping out in our living room for the next 6-8 weeks. Yes, that's how long his cast will be on! We have an appointment in 6 weeks and they will take x-rays then to see if they want it on longer, but even when they do take it off they are putting on a splint of some kind, and I would imagine he will still be in the wheelchair with that, too.

Today was a good day. Got in and out of his wheelchair a couple of times to go for walks, ate lunch in the backyard, and pooped! Hey!! The first poop in a bedpan is a big deal!! And he's getting more used to the cast. He's even moving himself around the bed a little bit, so he's not just staying in one spot.

He truly is the bravest kid I know, and he is such a trooper! Hopefully the next 6-8 weeks will go quickly!!

Tomorrow is surgery day!

Well, it's finally here. I almost don't want to say anything for fear I will jinx it and they'll postpone his surgery AGAIN.

We check in this afternoon, that's why I'm writing now. We pick up his CPAP machine on the way, and then we get to have a 'sleep-over' at the hospital. His surgery should be first thing in the morning - that was the whole reason it got postponed the last time - so hopefully by this time tomorrow his surgery will be over with!! WHEW! I'm ready!!

Alex's sleep study pics

About 6 weeks ago, Alex went in for a sleep study. His first sleep study was before we adopted him, but he was living with us. This doctor called and asked if we would bring him in for a free sleep study, so they could get some good baselines on children with Down Syndrome. We did it, and found out that as soon as he falls asleep, his oxygen levels dive! Same results with this sleep study. When we got the results from the lab, the doctor had written " Overall, this was an absolutely excellent sleep study. Sleep itself was really gorgeous with regard to organization and sleep stages. "

Hmm. I didn't know sleep could be gorgeous!

To make a long lab result short, he will need to be on a CPAP machine. We knew that. But the picture I took of him right before he fell asleep is too priceless not to share. He looks thrilled doesn't he??

Well hello there, beautiful thing!!

Every year these spiky, leafy stalks grow randomly around my yard, and I have cut them down. I thought they were wild onions or something. This year I didn't cut this one back. I thought I would see what happened. What a surprise I got when this pretty little flower bloomed one day. It kind of looks like an iris, but it's much smaller. Any ideas what it is? Whatever it is, it makes me smile, so I won't be cutting them back anymore!!

YOU DON'T WANT TO SEE THE MAMA BEAR COME OUT IN ME!!

I think there is a conspiracy going on. I'm pretty sure some mob or government group - or whoever makes conspiracy theories - is trying to mess with my mind. Well, WATCH OUT mobsters / politicians / you -know- who- you -are!! The mama bear is coming out in me, and she's not pretty!

The last 4 days I've been dealing with our phone company. I know, sounds harmless, right? Well, they fix it. Then it goes out an hour later. They fix it. Out 1/2 hour later. They fix it. Out for the evening. They exchange equipment. It works for 2 hours, then out for 2. They fix it. Out for the evening. And on and on it goes. See what I mean; they're messing with my mind!

Then I get a phone call this morning from an anesthesiologist from Shriners. They want to move Alex's surgery to Thursday of next week. Are. you. kidding. me??? It's 3 days before the scheduled surgery, which took us almost 2 weeks to get this date anyway, and now you want to change it?? If they do the surgery on Monday his surgery will be last, which fasting all day for a diabetic is not a good thing, so let's change it to Thursday so he can be the first surgery that day.

Just so you know, I very politely told them, "We are showing up for surgery on Thursday whether you are ready or not And if you're not you will have a very angry mother on your hands!" Yeah. I told them! Who's messing with who now?

It's official!!

Monday the 10th will be surgery day!! Whew! It's nice to finally know for sure! We will keep this updated on his progress and add some pics.