Moving Kendall over to my new site!

For those of you that Follow my postings, I want to introduce you to http://www.wolfhirschhorn.org. I started this new blog just a few shorts days ago and I invite you over to see more about Kendall and about other children with her same condition. If you only want to read about Kendall, you can select her name in the categories drop down and you will only see her postings.

Please drop by and let me know what you think. I hope to make it a place where all of the families can find out more about their children.

Thanks!

Update

Kendall Eating some cake late fall 2009

Kendall glowing from her new tan on Clearwater Beach

By the pool at the Marriott Suites on Sand Key

Carsen and Kendall by the pool

Kendall riding a toy at a party

Wow, I've been so bad in keeping Kendall's blog updated. This is my first post in almost 6 months and feel quite terrible about it...

Things as always have been a roller coaster and we continue to enjoy the ride. As with all of our new found WHS friends, it's never easy, but we always try our best to take the great out of the situation and see it overtake the rough parts. We've done that well since my last posting.

For starters, Kendall is a new girl these days. She has figured out how to scoot, which complicates things for us, but gives her a sense of motivation. Knowing that she can actually get to something she wants has given her new life. In fact, she has picked up a new emotion that counters the motivation: frustration! When you realize you want something and are used to getting it, frustration sets in when you don't get your way. We all take this for granted as it is a normal transition in development with non WHS kids. Seeing Kendall acquire these new ways to use her brain is great to be a part of.

On the walking front, we're still a ways away from this accomplishment. She is continuing to stand and will hang on to chairs or couches, but only after we prop her up. Actually, we saw her pull herself up into a standing position yesterday for the first time. I don't suspect that she will be doing it on a regular basis yet, but it is a great sign of strength that she hasn't shown in the past.

Another sign of strength is her willingness to crawl. She is starting to crawl more, only because she thinks it's a way to show off. She prefers the scooting way of travel, but will start to crawl to get some attention. She mostly loves watching herself do it in front of the mirror. Scooting can have its downsides since she ends up cleaning the floors everywhere she goes. We're considering strapping a mop to her bottom to help us out a bit. (We tried teaching her to help around the house with the chores- http://www.youtube.com/watch?v=MVqsxgtVklc) She gets around pretty good for the most part.

Our biggest hurdle continues to be her feeding. We've been so focused on her growth in this area and lost sight of one of the key developments with her and that is weight gain. We stopped her night feeds some time ago due her movement in the crib. We quickly moved to working on her oral feeding and she was doing well. However, we were limited to what we could feed her because of her gag reflex. She has a real problem with anything that doesn't easily dissolve in her mouth, or with food that sits in the middle of her tongue. In either of these scenarios, she will get herself into a gagging frenzy followed by stomach contractions. The end result is her losing her lunch and all the effort we put into getting it down. So, we bought a new vitamix blender and made her food, which included mostly vegetables and fruits. Knowing that she was eating healthy, we didn't think too much about her weight gain, or lack thereof. The end result was a loss of 5 pounds in just about a years time (almost 25% of her weight). We were devastated when we found this out. Cathy took her back to the GI doc to find a way to get her back on track. He put Kendall on Peptamen, which is high in calories and full of vitamins. She has now been on this for about 2 months now and we've seen a small uptick in her weight as she has gained about 2 pounds back at about 19.5 pounds.

On the other fronts, she is still not talking too much. She makes a lot of noises and mimics us on occasion. Her health overall is pretty good and we've been able to stay clear of hospitals for a while now. She gets her usual colds like any other kid, but has been healthy these past 9 months or so.

For us, we've been keeping her at home and trying to work at the same time. We've hired a couple part time nanny's to help out on days where she doesn't have therapy. They started last week and so far it has been great. Cathy and I both work in and out of our house, but are always tied to the house to care for Kendall (and Cailen!). Our jobs have been suffering over the past few years, forcing us to make up time in the evening and weekends to make sure we don't get fired... We are really stressing play time and work with Kendall during the nanny time so that she can continue to make further gains. In addition to Kendall, they watch Cailen, who turns one in a few weeks. Cailen is a super baby and loves to play with Kendall. They get along so well and have also been sharing a room since Cailen was born. We were hesitant in putting them together, but it has worked out really well. They both like the company and they have grown a little bond together.

As with all of our friends we've come across with children like Kendall, we still have our tough times. Kendall brings so much joy to our lives and her laughing is so contagious. We've never seen such a happy child and we are thankful for every day she is with us. However, reality sets in on occasion and we struggle with how to deal with her in our life and what it means to the other kids. At times, our son Carsen will be outright mean to Kendall. He sees her as a threat and knows she is different. He turns 4 in June and once said to me that 'Cailen and me are the same and Kendall is different'. It was a peek into the future about how this situation needs to be explained to one of our kids.

Oh yeah, I almost forgot to mention...Last November, we road tripped it to Florida (from Chicago). We hit a wall and decided that a 3 year vacation hiatus was in need of breaking. Starving to get out of the monotony, but the fear of how we will handle 3 kids in car seats for 2400 miles round trip, we just said F*&K it and did it! We feel like we've been tied to the house since Kendall was born in order to deal with her feeding and everything else that goes with her. We broke the routine and enjoyed every minute of the trip. It was the best thing we could have done to get refreshed on life. Kendall enjoyed herself as well and we could see the change in her. We realized that it is not just us that feels the stress of the situation. She felt it as well. But now we know that she too can enjoy a break from the every day.

Enough for now. I have to get on to the other kids blogs...