Check out my new teeth

I took this photo today during Alex's double therapy session. She has physical therapy once a week and then once a month we have a home visit from a teacher of the visually impaired. She comes to help us learn the best ways to enhance Alex's sensory experiences and learning.

I think we've mentioned this before, but just to give a little history, Alex's vision is fine however she does have some issues with eye function most likely caused by her Spina Bifida. Early last year her PT noticed she was having difficulty looking to her right side along with some other issues so she had a vision test and functional vision evaluation done. She was diagnosed with two functional issues and the doctor recommended we take her twice a week to an infant and toddler class offered through Anchor Center for Blind Children. It's a non-profit organization dedicated to providing early intervention and education to blind and visually impaired children throughout Colorado. The center is amazing. It was built in 2007 and it's about 2 minutes from our house. When I took her there for her initial visit last summer they had us wait in a dark room filled with lights, textures, and sounds. As good as this option sounded to us (and Alex too who I'm sure would like to be around kids her age) we couldn't risk Alex being exposed to so many germs. We've settled for home visits for now and maybe this summer she can attend class.

Did you check out those two front teeth. Alex got those for Christmas :)

Welcome to Holland

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

--

I've read Welcome to Holland before but Aunt Genell recently emailed it to us and I thought it would be appropriate to share as we start a new year. This past year has been a big one for us and felt like a roller coaster ride. So many ups and downs and so much we didn't anticipate (like 9 ER visits, 7 inpatient hospital stays and over 50 outpatient visits). We knew that having a child with special needs would be different and would take adjustment. We also knew we'd have good days and bad days. Despite spending so much time at Children's, if you've followed our blog you can tell we've had far more good days than bad, and the bad days just make us appreciate the good ones even more.

It's true what Emily says about learning a whole new language and meeting new people. We've definitely had a medical crash course the past year and we continue to learn the language of insurance and medicine. We've met some very amazing people. Alex has had extra special care from Miss Leah and Miss Amanda and so much support and prayer from The Holmes family hundreds of miles away. There are so many people that have helped us along this journey we couldn't possibly name them all here. But there are a special few (outside of family and close friends) that have inspired and touched us in a special way: Trevor, Amber/Alli, Lacy/Autumn, Jenene, The Day family, and everyone from SFC. Thank you all for helping us along the way.

We look forward to a new year, growth and most of all Hope.

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.