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

Been working out

gun show anybody?

Funny girl

So we're officially on lockdown for the winter - so far, so good. Alex has another UTI, but we'll take that over a hospital visit any day. Lately Alex has taken to entertaining herself by screaming, then thinking it's funny & cracking up. We caught her on video & just had to share:

October is Spina Bifida Awareness Month

So we've decided to post an informative bit about SB, as a refresher for those who may not know or remember the details:

What is Spina Bifida?
Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. The term spina bifida comes from Latin and literally means "split" or "open" spine.

Spina bifida occurs at the end of the first month of pregnancy when the two sides of the embryo's spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back. The condition usually is detected before a baby is born and treated right away.

Why does Spina Bifida occur?
The causes of spina bifida are unknown. Some evidence suggests that genes may play a role, but in most cases there is no familial connection. Some researchers have discovered that folic acid, a common B vitamin, can help reduce the risk of having a child with a neural tube defect. Women who take folic acid daily for at least one month before pregnancy will reduce their chances of having a baby with spina bifida by up to 70%. The FDA recommends that ALL women of child-bearing age take 0.4mg of folic acid everyday. You can find this amount in most mulit-vitamins.

What effects does Spina Bifida have on a baby?
There are two forms of SB. Spina bifida occulta is the mildest form of spina bifida (occulta means hidden). Most children with this type of defect never have any health problems, and the spinal cord is often unaffected.

Myelomeningocele (the form Alex has) is the most severe form of spina bifida. It occurs when the meninges push through the hole in the back, and the spinal cord also pushes though. Most babies who are born with this type of spina bifida also have hydrocephalus, an accumulation of fluid in and around the brain. Because of the abnormal development of and damage to the spinal cord, a child with myelomeningocele typically has some paralysis. The degree of paralysis largely depends on where the opening occurs in the spine. The higher the opening is on the back, the more severe the paralysis tends to be.

Children with spina bifida often have problems with bowel and bladder control, and some may have attention deficit hyperactivity disorder (ADHD) or other learning difficulties, such as hand-eye coordination problems.

As most of you (who have followed us on this rocky path) know, there can be a myriad of other problems associated with SB. It's a daily struggle and prayer to get us through them. But ultimately it's awareness of SB, and the role folic acid plays, that can help to reduce the number children born with it in the future. So we ask that you take the time to share some of this knowledge with anyone who may be curious about Spina Bifida and/or the importance of folic acid.

Physical Progress

I decided to post some pics I took from Alex's physical therapy session this week. Mary, our PT always laughs at how many pictures I take but what can I say, we are proud parents. Alex has been making big strides lately with her physical development and motor skills. She's holding her head up for longer periods of time and bearing weight on her arms. She is pressing buttons on her toys, reaching for things and starting to use her index finger and thumb to put dry cereal in her mouth. It's exciting to see the progress she is making and inspiring to see her strength and growth the past few months.

Who could say no to these eyes?

We're in trouble...

Fall flower

Here's a nice pic from our evening walk. She's getting pretty good at
holding things, although they all and up in her mouth.

Big-girl spoon

The last couple of weeks have been full of trying new things. We've had some minor setbacks with eating solids recently but between new spoons and thickening, we seem to be back on track. We are still working on lots of tummy time which will ultimately help strengthen Alex's trunk and neck muscles and in turn help her gain more control when eating and hopefully stop aspirating (at least we hope this is the case). Alex is finally showing some interest in holding her own spoon and feeding herself. Her OT suggested we start putting food on her tray and let her play with it but she's much more intrigued by feeding herself with a spoon so that's what we've been working on. I have to admit that giving Alex control of a spoonful of food is hard and I have to just get over her getting messy, especially when the veggies go straight into the hair.

The weather has been amazing lately and we've been spending as much time as we can outside. We squeezed in one last camping trip with the fam a couple of weeks ago and we are laying low and spending a lot of time at home and in our backyard away from the crowds.

Here's a video of Alex's semi-success with feeding herself.

1st round of pics from Folk Festival

We've taken so many pics lately, and been doing so much this summer that it's been an overwhelming task to go through all of them & pick the best ones to post. We feel like we've really made the most of our hospital-free time this summer.

So I'm just going to start by posting a few pics from the Folks Festival we went to in Lyons last month. We had such a great time - even better than Telluride.

Sorry it's been so long. Been a busy summer.

We've been enjoying our summer...trying to pack in as much as we can. We recently got back from camping at Red Feather Lakes for the weekend. Several weeks before that we took Alex to her 2nd music festival - the Folks Fest in Lyons. We actually enjoyed it quite a bit more than the Bluegrass festival, as it was a lot more family-oriented. I'll post pics soon, just don't have them handy right now.

We also had some tests recently which determined that Alex is still aspirating, although it's not certain if it's her food she's aspirating or her own secretions. Of course, the docs are bringing up the G-tube (feeding tube) as a potential solution, but we've decided that we're not going that route unless there's no other option.

She also had another MRI, but despite our calls to the Neuro docs, we still haven't heard any results. Guess we'll just have to wait for them to get around to us. No news is good news, right?

It's hard to believe summer is practically over now. We definitely have made the most of it, but we're dreading winter and another season of respiratory infections. Add to that the concerns about Swine Flu (which targets the respiratory system), and we're certainly planning on keeping Alex on lockdown.

Anyway...just wanted to catch everyone up. Sorry it's been so long. We have a ton of pics to post soon, once we can get them on here.

Until then...

Summer Fun

We can't believe it's already August. It's always fun to see how much we can try to cram into 3 hot months. We did manage to take Alex swimming for the first time recently and she LOVED it! We definitely need to get a few more pool days in before it cools off.

Alex's blood work and tests she had done at Children's last week all came back normal so we think that is a good thing. Our next hunch is one of her new meds is inadvertently causing the fevers so we'll try her off of it for a few days and see what happens. Other than that, Alex is doing great and has been a happy little girl. Nana Carol is here visiting and taking really good care of her. God always knows when to send us an angel :)