Christmas 2009

Just waking up

Alex loves her new Elmo book

A new friend

Can you tell Alex adores her dada?

Christmas 2009

Hope everyone had a great Christmas. Jimmy and I hung out with some family on the night of Christmas Eve while Alex stayed home with her sitter. Although it would of been nice to bring her along, it's too risky to have her around a lot of people, especially kids. Our original plan was to travel to Tulsa for Christmas, but we decided to play it safe and stay home this holiday.

The three of us hung out at home by the fireplace on Christmas day. We opened gifts, watched movies and relaxed. What a change from the busy weeks leading up to this time. We had no places to be, no work or school, no appointments or therapies and no health concerns. It was truly peaceful and calm.

Last year Alex slept through the excitement at Christmas, even opening gifts. This year she decided to continue the tradition & literally fell asleep playing with tissue paper. It was so sweet and we happened we catch it on video:

After her nap.....

Winter Update

Just wanted to post a few pics and let everyone know we're doing ok. As with most people during the holiday season, we're super busy. Not so much with shopping and holiday parties but more with work, doctor appointments, therapies and keeping up with things at home. Alex is getting over another UTI and having tests done since she has completely fallen off the growth chart. Don't know too much at this point other than she will be seen at Children's in January for further testing. She's also gotten the flu shot, H1N1 and synagis shot for RSV. Actually the synagis is a once a month shot at a special clinic so she has another one scheduled for tomorrow. I think we've built up our defenses the best we can so we'll continue the lock down and pray she stays healthy. Say a prayer for us because the lock down situation is very challenging at times and can make us feel isolated. We know it's temporary so we try to focus on that and really look forward to warm weather.

Alex has a few teeth coming in and loves to chew on her oxygen tubing so thought we'd post a few pics. Wishing everyone a Merry Christmas and may the new year bring us all Hope.

Love,
The Diffees

A lot of thanks to give

We couldn't be more grateful to have Alex home for her 1st appreciable Thanksgiving. Especially considering how much the child loves food (not unlike her parents). We've had a great day cooking & hanging out with our family from Tulsa (via video chat).

Nothing like a kitchen filled with the scents of Thanksgiving

Alex, on vchat with her Tulsa Grandparents

2 great-lookin' turkeys

Clockwise fm bottom left: mashed pots, giblet gravy, yams, dressing, and green bean casserole (center)

Gobble, gobble

So we fed Alex her normal lunch, plus a bottle, then sat down to an early t-giving dinner. Even though she had just eaten (a lot), she kept whining & making puppy-dog eyes until we fed her from our plates. Welcome to the gluttonous American holiday we all have come to know & love so dearly.

In fact, I think I may go for round 2 right now :)

Happy Thanksgiving!

New equipment to help Alex stand

It's been a busy two weeks since we last posted. I came down with a cold right after Halloween that stuck around for a while, and of course Alex came down with it too. We are both doing much better now and Alex managed to fight the bug off all by herself! This is a first, and definitely a good sign. When dealing with SB and her other chronic health care issues, we are often told, "let's just wait and see what happens." It's been a waiting game since we were first told about Alex's SB so I guess we've learned to accept this way of life and patiently wait for answers. It seems like we are constantly trying new meds or adjusting doses and still working on the right drug cocktail.

As you can see from the pics, Alex got a stander. From her chest down, her body is supported allowing for weight bearing on her lower extremities and feet while in a standing position. She's in the stander for about 20 minutes twice a day and doing well. She works so hard holding her head up and playing with her toys simultaneously and fatigues pretty easily. We will slowly work her up to being in the stander twice a day for an hour.

The stander is actually really nice and we got it from a local non-profit founded by a couple who has a child with disabilities. As their child grew out of her first wheelchair they realized that there wasn't an organization out there that existed to help find a new home for such equipment so they created one. They basically rehab equipment that has been donated and usually outgrown by the owner and then sell it for a fraction of the price to families like ours. Our stander would normally cost about $2500 and is not covered by insurance, yet we got it for $200. Medicaid usually kicks in and helps pay for DME (durable medical equipment) but we unfortunately are on a 3-5 year waiting list to get on it. I'm not going to get on a soap box about health care, but we are happy to have a great resource in town that will help Alex be more independent.

We hope all is well with everyone and send our love.

Happy Halloween

Our little lady bug had a great Halloween this year. Nothing over the top and no candy but she did enjoy getting out of the house for awhile last night. She tagged along in her stroller as her older cousins went house to house trick or treating.

A Winter Adventure

Want to go outside and play in the snow?

"I don't know, it's pretty cold"

"Look, I can eat snowflakes. This isn't so bad."

"But I think I'd rather veg out on the couch."

We had our first snow storm of the season this week and got almost 2 feet of snow.

Fall photos

Thought we'd share some of the fall photos we've taken recently. As you can see, things are going pretty well. Alex just finished her antibiotics for her UTI and is recovering nicely. We've become quite obsessive about germs and go through a lot of anti-bacterial soap and hand gel. Although Alex loves those Target runs with mama, I think she equally loves to stay home and watch football with dada. Anyone who comes over to the house knows that the first thing we ask is "did you wash your hands," and then of course we say hello and give hugs :)

We know this is just the beginning of respiratory season so keep us in your prayers. We send our love to everyone.

Love,
The Diffees