Happy New Year!
I hate to say this, but I'm going to go out on a limb and state that 2011 was our best Christmas ever. Not only did we get to spend a ton of time with both of our families, we got to see some pretty amazing breakthroughs with Miss H. Major Breakthroughs The best one, by far, was the fact that Miss H slept each night for at least 6 hours straight. She hadn't been sleeping well for the past 3-4 weeks. Some of that was due to a cold she'd gotten two weeks before Christmas. We honestly should be thankful that this was the first cold she'd ever contracted, but it was pretty stressful with a 101+ degree temp for a few days. But, a lot of the lack of sleep is just part of the territory with a special needs baby. Of all the other HIE moms I talk to, we actually have it pretty easy. Many parents get only 2-3 hours of straight sleep a night. Some of these parents are single moms or dads...which makes the job even more daunting.
Another breakthrough that was exciting was the Friday before Christmas. Dan was going through her normal routine by giving her a bottle before bed, but Miss H was not having it. She would NOT stop screaming. And the outburst was concerning because she normally wouldn't scream that long and hard for the length of time she was doing it. It was as if she was in an extreme amount of pain. So of course, I went in to help as Dan was getting concerned something was wrong. I picked her up and took her for a walk around the room, which seemed to help. As soon as I gave her back to Dan in the rocking chair, he offered the bottle to her once more, and instead of screaming, she reached up with both fists and grabbed her bottle and guided it into her mouth!! Dan nearly cried. She'd never done anything like this before. After running back to the living room to tell my dad, he said it was the best Christmas present he could've received. I had to agree. I guess all that screaming was her frustration in not being able to do that when she'd wanted.
The final gift she gave us was her lowest seizure week ever - at an average of only 8 per day. With this, her smiling increased tremendously. She's never smiled as much as she's been smiling the last week. This of course has made for some really enjoyable days in her therapy and care.
All She Wants For Christmas Is... We know Hudsyn responds to sounds really well. I recently read some articles on how kids with special needs, especially those with CP are using iPads to communicate when verbal and fine motor skills are non-existent. That definitely applied to us. So, my parents gave Miss H an iPad2! We were thrilled to get started to see how she would respond, so I immediately downloaded a few age appropriate apps other CP moms had recommended. At first, she didn't do much with it. But now, she responds quite well to the games. You can see in the video below how she recognizes sounds and it motivates her to move so she can hear them again.
Giving is So Much More Fun Than Receiving The best Christmas present I've ever given was this year. I worked for a little over a month on a scrapbook of this very blog for both my Grandma Bahner and Dan's Aunt Nancy. Neither one has access to the Internet, so hadn't read the posts here that many of you have enjoyed since just after she was born.
Basically, I just re-formatted and printed each post from the blog, printed each photo...added several more that aren't included...then packaged and decorated it in an antiqued baby theme I found at Archiver's in Overland Park. Since my Grandma hadn't read any of this, you can imagine her reaction to the pink, leather binder I'd put it all in. It was wonderful to see the look on her face, knowing that the last photos I'd sent her (embarrassingly) were back when she was 6 months old. She told me this weekend that the only thing better she could've received was Hudsyn Ann herself;)
Other Fun at Christmas We stayed at my parents' house for a few days and celebrated Christmas Eve and Christmas Day there. It was great to hang out with my family for an extended period of time. We had even more fun this year with my cousin Mike Vilven and his girlfriend, Rachel.
Here you see her competing in our annual Pickle Game (it's a family tradition):
She got top prize with only 15 seconds! This meant she got first pick at the numbers on the tree, which lead to an envelope...containing a bit of cash;) Well, enough to get them back to Wichita anyway. My sister, Ash (pictured right) enjoyed the most amount in her envelope with $45...so getting the best time didn't mean you got the most money...but it DID guarantee bragging rights for a year.;)
We even had fun at church on Christmas Eve when unexpectedly, the preacher stated he needed volunteers for the reading and "performance" of this year's Christmas reading. The two pews our family took up were near the front this year because Hudsyn likes the music.
Instantly you saw all of our heads drop, hoping the preacher would pass us by as he weaved in and out of the center aisle looking for an appropriate guinea pig. Dan literally tried to hide behind me, while Mike went right into his trusted military-thousand-mile stare. But the Air Force training failed him in this scenario, and he was selected to be the next shepherd...complete with robe and staff;) We were all laughing, but as you can see by the boy in this photo...isn't wasn't fun and games for everyone.
Sunday afternoon, we headed to Topeka to spend time with Dan's family. Everyone gathered at Ben and Rachel's house where we were greeted with a big hug and tons of food (ugh, I didn't know how much more we could handle after Candy's amazing turkey lunch earlier that day).
Miss H wore the pink, sparkly dress Aunt Rachel gave her...a big hit. And completed the look with her Aunt Ashley's gift of pink snow boots. It was a great time and we all look forward to the next time we get to hang out.
Some other memories from that weekend...
Looking Forward I used to be someone who would create a list of goals each year. Get in shape, eat healthier, make more money, volunteer, learn a new language, etc. Most of the time I would achieve a few of them.
Ever since we've had Hudsyn, I've had to give up a lot of planning...not because I think it's invaluable, but because you can't plan when you have a child with special needs. Every day is different. You just have to take one day at a time...one moment at a time...sometimes, even one minute at a time. It's hard.
I had a financial planner ask me last week, "What do you think her income needs will be in the future?...Will she need a wheelchair? A nurse? Will she be able to feed herself? Will you need special equipment for the house...like a lift to get her in and out of a bathtub? The doorways widened if she's in a wheelchair?"
Our answer: We have NO clue. His response, "Well what do her doctors say?"
I almost laughed. Because, as you all know, the roller coaster ride that we've been on over the last year and a half, has mainly been because we've had so many varying opinions from doctors about her current condition and the future outlook. None of them really know. They're human after all, and the big variable here is a child's brain development.
Some kids heal. Some don't. Some heal partially. The brain is still an organ we know very little about and there isn't much help/treatment when it comes to curing the root cause of brain damage (i.e. creating new, more healthy cells). What we do have, though, is treatment of the many symptoms (seizures, feeding problems, motor skill delays and impairments, etc) and giving kids the best possible life they can have with the brain cells left that ARE functioning well.
But what this has done for me is to force me into a place mentally that I always used to struggle with....living fully in the present moment. This has given me a new appreciation for each minute I'm alive. There are days now that I'm not sure what my schedule looks like for the following day. (Before, that was unheard of). I know it sounds cliche...and maybe even a bit emotional. But, I'm more grateful. I'm happier than I've ever been. And I look at life quite a bit differently than I used to before she blessed our lives.
I'm really excited about 2012. But this year, I have no goals. I have no expectations. I'm simply grateful and very much looking forward to more of the love, friendship and family I've been so blessed to have in my life.