It’s been almost exactly a year since I last posted an article about Kendall on the Wolf Hirshhorn website. So much has happened over the past 12 months and I feel guilty for not continuing to write articles about Kendall and her journey. Kendall has done so much in the past year. She has fully transitioned from a toddler at 6 years old, to what seems to be a pretty smart little girl at 7 years old. Her Communications and insight into so many aspects of life have blossomed right before our eyes. She’s full of  life and is so attentive to all of the details, including all the things we take for granted on a day to day basis.

Her day starts by inquiring as to what will transpire for her over the course of the next 12 hours. She runs through a list of about 10 questions, including “is it a school day”, “am I going to Nana’s house”, “will I see my friends”, “is mom working”, “are you working”, “where are my brothers and sisters”, and so on and so on. It’s very important for her to know what she has in store for the day. She has to know what everyone’s plans are for the day. 

About a month ago we visited Kendall’s school to watch her and her classmates sing some songs. We also got to see her feeding routine, which requires that she leave her classroom, walk down a hall, past the gymnasium and three other classrooms, and into the nurses office where she asks for a pump. Before she leaves the classroom she grabs a picture of the nurse off of her classroom door and then attaches it to the nurses door before she enters the nurse’s office. After getting fed she grabs the nurses picture off of the door and continues on back to her classroom.  The amazing part of this whole process is that her attention span is extremely short. We have a very difficult time keeping her in line when we are in open environments because she wants to wander off and make friends with everyone she comes into contact with. And the fact that she can actually walk by all these other distractions without skipping a beat was just amazing to watch. She loves more than anything to meet new people and to make friends, and it has to be torture for her to pass by all these exciting things without even stopping to say hi. It made us so proud to watch her do this all on her own.

Kendall has also become quite the helper around the house. She loves having things to do even if it is cleaning off the table or sweeping the floors. She needs to have a purpose and we probably don’t give her enough chores, but when we do ask her, she’s always the first to jump in and help.

She still has a tremendous sense of humor and carries a smile on her face. She loves telling jokes and is extremely witty. It’s hard to pull a fast one on her because she can always tell if you’re joking or if you are serious. She’s so smart and intuitive and it’s amazing to see her display the funny side of life in the way that she does.wolf-hirschhorn syndrome pictures

As far as her vocabulary goes, she says so many things that it’s hard to list them all in this post. She can have a regular conversation with almost anyone and can describe how she’s feeling about any particular topic. Although at times I have a hard time understanding what she’s saying, she makes it a point to slow down, speak louder and lean over in my face like I’m some kind of moron that doesn’t understand what she’s talking about! The first time she did this I almost fell off my chair laughing like it was me that had the disability and not her. She’s such a funny kid.

She’s almost potty trained. She’s probably 80 to 90 percent of the way there. Her school and aftercare has been working with her everyday which has been awesome for us. She goes most days in just her underwear and it’s nice when she comes home in the same clothes she left with. We are so proud of her and she’s been a trooper even through my impatience with the entire process. There are times where I know she could do it but she just decides not to but those times are becoming fewer and far between.

Her eating is still a challenge in that she’s not really chewing food. We probably aren’t working with her as hard enough as we could in this area. I’m sure that if we spent the time, she would probably be chewing in 6 months or so. That is our next challenge for her. She can consume any kind of food as long as we blend it up, which we do for her at dinner. She’s also figured out what it means to be hungry, which is a big accomplishment. She will ask me at times if I heard her stomach growl and then let’s me know that I should feed her. It’s so wonderful to see that she is hungry and has an interest in eating. I still remember when she would throw up four to five times per day and never be able to show us any signs of her being hungry.

After couple years of being within 10 pound weight range, it appears that Kendall’s starting to jump to the next level of her growth spurt. She bounced between 28 and 38 pounds for quite some time, pending on sicknesses and other random things going on with her . But over the last 6 months or so she has started getting chubby and packing the weight on. She’s approaching 45 pounds which is great for her, but it becomes more difficult moving her around after she falls asleep. 45 pounds of dead weight is getting tough for us as we get older and she becomes heavier.15197710271_ff971a83c6_z

Kendall still sleeps in a crib, mainly because we want her to stay confined to her bed at night. She sleeps pretty well, going to bed around 9 p.m. and waking up around 7:30 a.m.. However, if we had her in a regular bed, she would probably be up and walking around most of the night. She’s a creature of habit when it comes to sleeping and I’m afraid to break that until we absolutely have to. We have a big girl bed for her waiting but I’m not so sure that we shouldn’t trade it in for something with rails in order to keep her confined to her space. We’ve had struggles her entire life with her going to sleep on her own without someone by her or being in bed before she falls asleep. She was actually fine about 3 years ago where we could put her to bed and she would fall asleep on her own. But after a week long stay in a hospital, it took almost 2 years for her to be able to lay in her own bed without screaming and getting so upset to the point of vomiting. Over the past 3 or 4 months she has calmed down and hopefully we are in a place with her we’re sleeping is something she won’t fight.

As far as friendships and relationships go, she’s becoming more and more distant from the mainstream schooling and the activity base around our neighborhood and school system. She is in her third school in 3 years and will be moving again to an out of district special education school next year. Although the facilities and education given to the children at this new school are supposed to be superb, we are sad that she will not be around the children from our neighborhood or with the kids that are part of our community. Because Kendall is around all of these kids all of the time, she’s just another kid to them. They’ve grown up with her and accept her as being Kendall. They don’t know any different. But because she will now be moving into a different school, we fear that she may lose the bond and the connection she has among her peers in the school district her brother and sister go to. The only hope we have for her maintaining this connection will be with the aftercare program she currently goes to which is held in a grade school within the district our other two children attend. She has a lot of friends there and all the kids like to play with her. It’s nice to see her included in the mainstream activities, but that will be her only exposure for the next couple of years until she goes to middle school. We are hoping for the best.Scan_Pic0001

All in all Kendall is doing fantastic and she’s at such a wonderful age right now that keeps us enjoying who she is. In our eyes, her Wolf-Hirschhorn Syndrome disability has somewhat dissipated as she is growing up. She’s been healthy, seizure free, and continuing to develop as a little girl. We know we have challenges ahead but we are trying to do our best to enjoy each and every  moment with her. She always has a smile and is always willing to give us love no matter what the situation.

 

9 Responses to Kendall Update 2015

  1. Laurie says:

    I loved reading this article about Kendall; she has always been such an inspiration to me. Kaylee is still so far behind, and like you said with your comments about Kendall’s chewing, I probably do not work enough with her at home on communication, chewing, walking, etc. Reading about Kendall gives me more motivation to do more at home to help stimulate Kay’s development.

    On another note…Kendall ROCKS those glasses! 🙂

  2. Rich says:

    Kevin,
    Very insightful, thanks for sharing. I remember my aunt meeting Kendal saying how she is an angel. Couldn’t agree more!

  3. Shirley Bidnick says:

    You have posted another lovely, interesting and informative piece. This site will always be Kendall’s site. Her progress is amazing, but we are learning that many children with WHS accomplish much more than we ever expected and she certainly debunks what the old text books told us. I marvel that she can stand straight, walk independently, and that her speech is so well developed. She also seems to be capable of complex thought processes. On the other hand her persistent sleeping and eating problems seem to be universal WHS issues. As parents, you are dealing with the common special needs issues of toilet training, physical size, and which education option is the best. Thanks for your post. You help older parents like me, find peace with our past, and younger parents prepare for their future.

  4. letty says:

    This is so awesome! Congrats on all of her accomplishments….that just means you’ll are doing all that needs to be done. I can’t wait to be able to have a post like this one.

  5. Ross says:

    Awesome update Kevin, always a delight to hear of Kendall’s progress!

  6. Ann says:

    I so enjoy hearing how well your daughter is doing. Mine has not progressed as well but is getting bigger. I can relate to the dead weight as my daughter does not walk and has spastic cp. She pulls herself into a ball when we try to pick her up. Makes it very hard to lift her and we are getting old. My daughter is in a hospital bed as she is too big for a crib. It doesn’t sound like Kendall would like that though. Keep up the good work, it’s paying off and Kendall is adorable.

  7. Anitra says:

    I devoured this post when you first posted it — amazing update. I love Kendall’s curiosity about her day. What awareness! It was also tremendous to read that her vocabulary is so robust that you couldn’t list all of her words. Elsa has about 5-10 words at age 3, and many are approximations, ie: Bah for Ball; Buh Buh for Baby; etc. I hope she is able to attain half of Kendall’s verbal command someday. Because Kendall is so outgoing socially, I’m sure it is hard to imagine her in a different school environment. We’ll be thinking of you all as you undergo that new challenge. She will be a light, no matter where she goes, that much is certain!

  8. Carla says:

    She is adorable!
    Thank you for sharing her with us!Your story is so encouraging!

  9. Jeevan says:

    She’s so beautyfull!!!!!!!!

    What a lovely daughter you have. god bless her and her family.

    Hope it getting better and better. sorry for my poor english. but please accept my support.

    Jeevan from Switzerland

Leave a Reply

Your email address will not be published.