Sunday, October 19, 2008

New work from our resident artist...any bids?


"Daddy"
"Mommy"

"Vanessa"


"Nicole"

"Aunt Bean"

"Snake"

"Spider"

"Tadpole"
"Frog"

"Bottle"

"Flower"
(Matt drew the pink flower, and Vanessa mimicked it in blue)

Thursday, October 02, 2008

Guess who's walking?

It's true..she's walking! It feels like a miracle! Watch out world, here she comes!




I hope we'll be able to post a clip of it soon!

Sunday, September 28, 2008

LPA-Utah

Our little family had our very first get-together with members of the Utah chapter of LPA (Little People of America). This is actually our first interaction with other people dealing with dwarfism. It was such a fun experience and everyone was so welcoming and helpful. Both Vanessa and Nicole became instant buddies with everyone (a shocker, I know), and didn't want to leave when it was over. Matt and I also enjoyed getting to know some of the LP's and their families who regularly attend these events and had so much information, understanding, and encouragement to share. We are looking forward to getting to know members of the group better, and attending their upcoming Halloween party.

Friday, September 26, 2008

Our Favorite (Sleep) Things

I have so many other things to blog about (trips we had this summer, cute things the girls are doing, medical updates, etc.), but I thought it would be nice to share a few things that just make us happy.... Since there are many, here are the ones that make us feel cozy:



Nicole's doggy is her cuddle buddy...she doesn't like sleeping without him, although curiously he often ends up covering her face! Sometimes when she wakes up in a cuddly mood (which is fortunately still pretty often), she requests that her "woof woof" stay with her. If you refer to the last post, you might get a sighting of him. He has been her friend through travel and surgery, and receives a lot of hugs for his service.

Although Vanessa loves all her princess stuff, and her thumb is a given, her current favorite is her bright orange fleece blanket she won for dancing with a (guy in a suit) chicken at the Oregon State Fair. When we tried to share it once momentarily, she politely, but firmly, requested it back. She wants to be covered with that blanket in heat or cold. Needless to say, I have to sneak it to the wash!


I lumped Matt's and mine together as they are somewhat shared. For our wedding, my favorite gift was our double pillow-top bed. Although parenthood does not always allow as much sleep as I like, our bed is always a welcome sight at the end of the day (although not usually as neat as pictured here). The hardest part is leaving it!
Technically, there is one other one for Matt that should be pictured...the couch. No, I do not make him sleep there for any reason. He just likes relaxing there after a long day, and there are many times I come down in the morning to find him still there! Poor guy, always so tired!

In case you were wondering, Matt does not sleep with his guitar (although I think he has been accused of it in the past). Recently he has discovered it provides a great bedtime bonding moment for him and the girls. He plays and sings as they (ideally) drift off to sleep. Vanessa's request? "Drops of Rain" (aka "Thank You" by Led Zeppelin). Nicole's? Anything, so long as Daddy plays and sings. Mine? I agree with both Nicole and Vanessa, although I do love the one Matt wrote while we were dating.

Monday, September 08, 2008

The pictures...

The results...

So, alls well that ends well! Thanks to prayers and blessings, good doctors, and one tough little girl, the surgery is over and Nicole is doing great.

As is customary, Nicole's food/drink intake was limited the night before. This was fine, as she slept during her fast, but since her first request upon waking is a drink, I thought I'd be "smart" and give her a bottle of juice just before the cut-off. That backfired as it made her gag and throw up at 4:30am all over our bed. Fortunately, no harm done, but it proved for an interesting night.

We dropped Vanessa off for a morning of fun at Adam and Kristie's house (complete with a special breakfast and trip to the library...thanks you guys!), and reported first thing at the hospital. Nicole got to put on some comfy hospital jammies and even got a "princess crown" to wear that she was pretty excited about.

We then met with the anesthesiologist. Although we knew this was a minor surgery, her small airways that created the need for surgery were the same factors that worried us about the procedure, especially the anesthesia. We were pleased to find out that this anesthesiologist has actually worked with other children with dwarfism and was quite familiar with their particular needs/challenges. Here's where we breathed a big sigh of relief!

Although the wait during surgery felt long, it went pretty quick by the time Dr. Riddle (our ENT) dropped by to tell us how the procedure went. He said she did great and everything went fine. He proceeded with both the tubes and adenoids, but due to the fact that her tonsils and adenoids are actually quite small, he left her tonsils in.

Healing and scar tissue in this type of surgery can affect airway space, and without any obstruction caused by tonsils, their removal would have done more harm than good. He did mention that her craniofacial structure is small, but that her tongue is large in comparison. It was actually creating the biggest obstruction issue. This means we go need to see him and Dr. Pfeffer (sleep specialist) again to assess whether to do CPAP or another option (other surgeries often done in this case are also risky for someone with Nicole's structure). Still, as severe as her case is, something needs to be done to prevent strain on her heart and adverse effects on her development that would eventually occur without treatment. More fun news.

The anesthesiologist also stopped by and reported that she did well, but even given his experience, she was hard to intubate. Poor girl with her tiny airways!

Still, the "worst" was over, and now we knew her recovery would be a lot easier. (Ah, our silver lining). We had to wait another "long" stretch of time, then greeted her in her hospital room. The first word out of her mouth? You guessed it, "Mommy!"

After we both comforted her and got her settled in her fancy hospital crib, I snuggled up with her to get her to rest while Matt picked up Vanessa and some goodies. After she and I both had a good nap, we reunited as a family and partied with dollar-store toys and lunch. I think Vanessa had more fun in the crib than Nicole.

The rest of our stay was nice and uneventful. Dr. Riddle requested we still stay overnight to track Nicole's oxygen levels. Since she recovered from anesthesia quickly and had lots of energy, we just played and ate most of the time. We discovered the lovely playroom down the hall (she unfortunately was the only kid there who felt well enough to play that day, I think), and Nicole quickly fell in love with a little red wagon. She made her "rounds" pushing that thing down the hallway, making friends with the nurses and squealing with delight. They even brought out bubbles for her that only added to the fun!

As Matt had the chore of tending to things at home, he and Vanessa were busy preparing dinner and getting stuff done (well, okay, some of that time Vanessa got to watch some movies). Nicole was missing them pretty bad, especially since she's rarely gone from Vanessa. As it got later in the day, she wandered around with her wagon, stopping at each door and peering in as she called out, "Nena, Nena." It was sad and very sweet at the same time. I must confess I felt the same way, missing half our family and beginning to feel ready to leave our "cage."

We had one last get together with Matt and Vanessa (with plenty of hugs to go around), then called it a night. Although Nicole was wheezy and restless during the night, she didn't need oxygen that night (at least by hospital standards), and the next morning we were able to pack up and head home. Matt came to get us, and the girls got to ride out in style in a big wagon. What a great send-off!

If you are interested in learning a little more about sleep apnea in children, here is a video clip that does a pretty good summary of what is involved for an "average" kid.

Wednesday, September 03, 2008

On a lighter note...