A Happy Annie!

Luckily, we've been able to catch a view smiles on camera lately.  Taking good pictures of Annie is a huge struggle since it's hard for her to cooperate on demand.  We try to just have the camera always handy for when she decides to give us smiles and giggles.  There's nothing I love more than hearing Annie's laugh and seeing her precious smile!  Here's a few I snapped this past week.

I haven't been able to hold Annie on my lap since last August. This probably doesn't seem like a big deal to most people who probably don't still hold their 7 1/2 year-olds on their laps, but it's a big deal to me.  It was last August when Annie's knee cap started dislocating, making it difficult to hold Annie without causing pain to her knee.  But now that her knee is healing from surgery, I can hold her again!  She's the most cuddly little girl I'll ever know and I cherish the times I get to be alone with her and rock her and talk with her.  She is such a joy in our lives and we are so grateful she is part of our family forever!

Annie's Ankle and AFOs

Annie's ankle is healing well since her heel cord lengthening last December.  She still has very limited range of motion, but hopefully that will increase with physical therapy.  We're just happy that it's back at a 90 degree angle again.

She got her cast off on January 28th and got her new pair of AFOs (ankle and foot orthotics).  Unfortunately this pair of AFOs is too tight around her ankles and nearly impossible to put on, so they made her a new pair. (It was also nice they needed to make new ones because we weren't aware of quite how much teal padding they would have--it was a little much. The teal matched the flower pattern, but absolutely nothing in Annie's wardrobe!)

This new pair is an improvement, but still not fitting quite properly, so the orthotist actually re-cast her for a third pair.  The third pair will be a different style with a separate inner boot that will snap into the outer casing.  Annie has had that style before and did much better with them, so we're going to try them again.  However, since Annie doesn't have her cast on anymore, we've got to keep her in these poorly-fitting AFOs until the new ones are made.  It's just torture to get them on her.  But she's a trooper!

Lexie's Breakfast Creations

Lexie has been having a fun time creating her own concoctions for breakfast lately. Here's what she had for breakfast today: Fruity Pebbles topped with some Cocoa Puffs and Total flakes. Yummy!

Star of the Week!

Annie was the Star of the Week last week at school. She had a great time helping her class get to know her better. She took a poster with pictures of her, and shared some of her likes and dislikes using her communication switch. She also got to do Show-and-Tell several days. She got to show the class how her G-button works, her American Girl doll and wheelchair, and even let her class sign her cast.

Annie's Sonogram Results

I took Annie to her pediatrician yesterday when I noticed that her G-button was bothering her. She was flinching and whimpering with pain whenever I touched or twisted her G-button. Although the skin didn't look red, I thought she might have an infection in the stoma, even though her prophylactic antibiotics for UTIs should treat other infections as well.

The pediatrician didn't have any ideas of what could be wrong, so he ordered a full abdominal sonogram that she had done today. The test took almost a whole hour with Annie very uncomfortable. The sonogram was completely normal, but as I watched them scan the area around her G-button, I noticed the tissues arching around the balloon that holds her G-button in. I'm not sure if that's normal or not, but my immediate thought was that she might need a longer G-button stem. I suggested that to the pediatrician and he thought that was a good possibility, considering Annie has never gotten a larger sized button since she was 2 years old! So we'll see if it continues bothering her, and if we still think that's the issue, we'll meet with a surgeon to have him determine what size button she needs.

Annie's 2nd CPAP Mask

We just got a new CPAP mask for Annie to try to eliminate the pressure sore her other one was causing. This one also has more straps, so hopefully it will stay put in the night better than her other one. We'll experiment with this mask and try to get her sleeping through the night with it, then she'll go for another sleep study where they will determine what level of pressure she will require to prevent her from obstructing.

Annie Starts CPAP

After meeting with the pulmonologist about Annie's last sleep study results, we've decided to try CPAP to treat her sleep apnea. Unfortunately her tonsilloadenoidectomy did nothing to improve her apnea. It is quite the ordeal to get a child to tolerate wearing a CPAP mask, but we have finally gotten Annie to the point where she's doing ok with it. Unfortnately this mask is causing a sore on her nose. It's also twisting sideways when she turns her head in the night causing the nasal mask to slide over onto her cheek.

We'll be getting a new mask and cap soon, so hopefully a different style will work better for her. Once we get the mask and cap fitting well and staying on through the night, Annie will go to another sleep study where they will determine what pressure level she requires to prevent her from obstructing.

Annie's Orthopedist Appointment

Annie went to the orthopedist today to get her pink cast removed. The doctor said everything is healing well and was happy with the range of motion Annie's ankle has now. They then made her molds for her new AFOs (ankle and foot orthotics). I helped Annie choose a cute flower and lady bug pattern we've never had before, so that will be fun. This will be her 5th or 6th pair of AFOs and we hope they should fit the best after having this surgery. Then, since it takes two weeks for them to make the AFOs, Annie got another cast put back on her ankle--this time purple!

Our First Winter in Nebraska

Supposedly this winter has been very unusual for Omaha. Long-time residents have told us that they haven't seen storms this bad in the last 15-20 years. We've had several days where the high temperature was around -5 degrees with lows in the -20s. Winds have been up to 40 mph creating wind chills in the -30s and -40s. We've gotten about 15" of snow with snow drifts up to 6 and 8 feet tall. So many people here have told us that they get by without a snow blower just fine--that usually they only get 3-4" of snow a year. So we decided to buy two shovels, try out our first winter, and if we decided we wanted a snow blower, we'd wait until the spring sales. Unfortunately, this was NOT the year to be without a snow blower! Justin and I have gotten LOTS of exercise shoveling 3-4 foot snow drifts across our driveway!

This is how we had to bundle up Justin to go shovel in 20 mph winds one day. At times he had to just stop shoveling and wait for the strongest gusts to subside. He's my hero!

I can deal with the cold and some snow, but we have unfortunately moved into a subdivision that does not get its roads plowed well. This is what our roads looked like even 5 days after the storms. Plows just won't clear or widen our street.

After daily phone calls to the county and the subdivision developer, we still haven't gotten our street plowed. It is so narrow that only one car can fit on the road. So when construction vehicles park on the street, the street is then blocked. Here's Annie's school bus trying to get down our street--the second time he's gotten stuck in the last 3 days of school!

I'm amazed that even after the storms, we've only had a couple days of blue skies and sun in the last month. Hopefully this gloomy winter won't last long. At least every winter from now on will seem mild to us!

Annie's Knee 3 Weeks After Surgery

Annie has been recovering really well from her surgeries in December. She still has to wear her straight-leg knee brace for another week, then she can wear a more flexible brace and start bending it.