Kendall 5 Years oldAs part of the history in tracking Wolf-Hirschhorn Syndrome kids and their accomplishments, I wanted to make it a point to document some things about Kendall for us to look back on at some point, but also to give other parents an idea of what kids are doing at certain ages. We realize that all kids are different and we don’t have a strong indication either way as to where Kendall falls on the spectrum. Regardless, here are a few items (in no particular order) to use as a marker for comparison.

  1. Kendall can walk with ease, still requires orthotics
  2. She can jump in place
  3. She can walk backwards
  4. Walk up and down stairs on her own holding the railing
  5. She can run, but not very fast
  6. She is well balanced, and rarely falls
  7. She can climb up most things that are about 2/3 her height, including chairs, couches and any other obstacles
  8. She can throw a ball pretty well in the direction she is aiming
  9. Talk maybe 250+ words, possible more
  10. She answers many yes no questions appropriately, according to what she really feels and thinks
  11. She knows what her name is and can say it. She also says “I’m me”.
  12. Maybe 50% of her words can be recognized by the general public.
  13. Kendall understands many words, phrases, and orders (go get a towel, clean up dishes)
  14. Sleeps in a crib still, mainly because she will not stay in a bed and still resists sleep.
  15. She will sleep at least 11 hours a night, but doesn’t take a nap.
  16. She is very social and will talk to anyone.
  17. She shows signs of frustration at time, mostly when someone takes something of hers that she is playing with or wants, or when she wants to go somewhere and we don’t let her.
  18. She is relentless when she wants something and will not give up until she gets it.
  19. Her fine motor skills are still behind. She can grab things with her whole hand but rarely uses pincer motions to grad objects.
  20. She can remember and recite parts of songs. If she likes them, she will get up and dance. She actually has good rhythm and can dance to the beat of the music.
  21. She understands that some songs are by some artists. She knows who Madonna is and can relate a few or her songs to her as the artist.
  22. She doesn’t quite understand the concept of fear and danger. She will put herself in harms way and not quite understand that there are consequences.
  23. She has a high tolerance for pain.
  24. She still wears a diaper, but understands the whole bathroom concept. We believe that she will be toilet trained and it would likely be sooner if we had a few weeks dedicated to her doing this. She already wakes up with a dry diaper when she is woken up early and will urinate on the toilet if we wake her up and set her on the toilet.
  25. Her sense of humor is tremendous. She loves to laugh and will find a number of things funny.
  26. She is very attached to mom and dad still.
  27. She loves to swim. She wears several flotation devices and can move all over the pool in any direction she wishes by kicking and moving her arms. She knows what the hot tub is and frequently asks to go,sit it.
  28. Her eye site is pretty good, but sometimes mistakes strangers for mom if they have the similar features.
  29. Eating for her is still a struggle, mostly chewing. If she could chew, she would eat many foods. She knows how to swallow and loves to try new things. She will put anything in her mouth, but if it doesn’t dissolve, it will stay in her mouth until she spits it out or until we take it out.
  30. She knows what hunger is and tells us when she is hungry.
  31. She gets nearly all of her nutrition through the g tube. She gets fed between 4-5 cans of peptamen a day through the tube and can consume nearly 180mls at once/ every hour or so.
  32. Kendall understands the alphabet and can recite it  even though each letter might not sound exactly like the specific letter.
  33. She can count to 14 without missing a number.
  34. She is extremely independent. Our biggest challenge with her is staying by us if she is not in a confined space. She will walk anywhere she wants to go and will keep going until we chase her down.
  35. She is 29 pounds, 37 inches tall.
  36. She shows attachment and emotion towards inanimate objects, like stuffed animals and babies. She will also pretend play with her baby and will take care of her baby (change it’s diaper, feed it, put it to bed, have it go potty, changes clothes).
  37. She shows consistent signs about worry and fear about thunder (if strong storm) and   The germs on yo gabba gabba.
  38. She understands that when people leave e house, she can go over to the window and watch them leave.
  39. She is very perceptive and will mimic our behavior after periods of time have lapsed. The other day, she was trying to eat salad and stomped her fork in the bowl, trying to get the lettuce on the fork. She associated that we do this with our salad.
  40. She can associate foods that are hot and knows that the fireplace, the stove and other fire related items are hot. She will even ask us if something is hot if she perceives it to be so.
  41. She will often ask if things are heavy based on how we pick them up. She will also state that things are heavy if she has difficulty picking something up.
  42. Medically, she is very healthy. She hasn’t had any seizures that we are aware of since a small one a few years back. Outside of a bit of pneumonia earlier this year, she hasn’t shown any signs of issues related to WHS.
  43. She’s very perceptive and curious. She will get into anything new and will try to apply it to exactly how we’ve used it.
    (THESE NEXT ONES ARE ADDED BY REQUEST)
  44.  Therapy- she is not in specific therapy anymore outside of what school offers.

wolf-hirschhorn syndrome

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18 Responses to Kendall 5 Year Milestones

  1. Laurie says:

    You forgot #44: She is more beautiful today than she was yesterday! Bravo, Kendall! You make me so hopeful for what Kaylee’s future might bring!

  2. Kim Shafer says:

    so encouraging! Thank you so much for sharing. She sounds like an amazing girl. was wondering is she in school or still receive therapy? Really, reading that list gives me hope to keep on keeping on!

  3. Mihaela says:

    Kendall is so amazing!!! I am really sorry we didn’t get to see her on Friday.
    We should arrange a local meeting soon :))

  4. Lupel says:

    Congratulations on Kendall she is a smart and beautiful girl.
    Is great to hear how well she is doing!!

  5. Heather (Frankie's mom) says:

    I love this! I think I’ll write something similar for Frank, when he turns three this fall. And wow, Kendall is a true beauty. What beautiful pictures and impressive accomplishments.

  6. jerri says:

    This post is so encouraging,thank you!!
    Kendall is soooo beautiful!!

  7. Cheryl says:

    LOVED reading about Kendall’s achievements. Glad she is doing so well!

  8. Hilary says:

    Kendall is absolutely beautiful! Hooray on all of her amazing accomplishments.

  9. Letty says:

    I’m glad to read about her accomplishments. She is a beautiful girl! She looks so much like Nathaniel in the face. I’m sure all of us parents see a little of our children in some of these and other photos…WHS features. Needless to say, they are all beautiful children.

  10. Sean says:

    Wow, what a great list. Our daughter Esme is two and a half but she was 11 weeks premature born at 2lbs. We had a terrible first 18months with constant hospitalisations for respiratory infections but she has been now 18 months hospital free but for a few days in June for a virus. She has come on massively this year from sitting through crawling and now pulling up to stand and cruise along the sofa, wall, low table and walking with a push along toy. We’re blown away from how she was last year and she surprises the physio given that she is just 15 and a half pounds. Just this last week she now feeds herself her bottle and is putting food to her mouth. Constantly smiling, laughing and following her younger (but much bigger 18 month old walking sister) about the house. Will have to do a intro and photos in due course but great site,

    regards,

    Sean (UK)

  11. Carissa says:

    Thanks for sharing this, Kevin. I’m sure you’re very proud of Kendall. She’s an amazing and beautiful little girl.

  12. Candace Peters says:

    My daughter Taelyn is 5 as well! She can roll on the floor and she bats at toys. She is stands in a standing frame but on her own she cannot. She doesn’t sit yet on her own. She is G-Tube fed since 10 months old. She is non-verbal. She is a happy girl. Hearing and seeing all these kids that do so much makes me wonder what I can do to help Taelyn achieve more, can anyone help?

  13. Latosha says:

    I love this post! Your daughter is so beautiful and I am sure this was very helpful to parents with younger children. Amariah will be 13 yrs old in about 2 weeks and I wish to do a very similar post at that time.

  14. Sandi says:

    Hi Kevin, I am new to this website as my daughter, Rebecca, was diagnosed the WHS yesterday. She is 18 now and she is very similar to your daughter in looks and development. I thought you might like a glimpse into the future.

    This is a picture of her before going to the Homecoming dance at the high school she attends. She went with one of her friends (also a girl) from her special ed class and a regular ed girl went with them to make sure they were having a good time 🙂

    FYI.. she is 4’6″ and 63 lbs

  15. shirley bidnick says:

    Taking the time to refect and collect an annual list of accomplishments and personality developments, is the best birthday gift a parent could give a child. I never did it, but you have inspired me to go back and do it. You have so much to be grateful for on this list. I am most impressed that Kendall enjoys playing with her dolls and she has such a large vocabulary. She is full of promise.

  16. Danielle says:

    Did you know your girl’s photo comes up on Google image search for Wolf-Hirschhorn syndrome? She’s a cutie with obvious personality, and her facial features are quite typical for Wolf-Hirschhorn. I say this because I was looking up WHS, since it’d been mentioned in a news article I was reading, and when I went to the Wikipedia page, the only photo they had was a poorly-taken one of a newborn, and honestly, I couldn’t even tell whether the baby had survived birth. I was thinking: Would you be willing to go to that article and edit it, and put your little girl’s picture there instead? She would be perfect for it–an obviously living child rather than a poorly photographed newborn, and a good example of the characteristics you would expect in a WHS child. Plus, she’s smiling. It would help new parents too; I wouldn’t want them to see a possibly-stillborn baby as their first image of what WHS looks like… Anyway, just a thought. You and your girl keep on rocking on.

  17. KevinO says:

    Yes, I know that her pictures show up. In fact, when we built this site, the pictures that showed up were horrific. Part of the strategy was to optimize the photos so that the good ones came up and people could see the positive side of the syndrome. Glad to see that it’s working!

  18. Betty says:

    I have just read a newspaper article on this disease and decided to look for more information. I think it’s a wonderful idea to list Kendall’s milestones. You give other parents hope and information relayed in such a way gives a more accessible feel to the symptoms of the disease. Laymen like me understand not only the bad things this causes to an individual but also the more important happy highs that can be achieved. It’s lovely to see such an inspiring post that is easy to understand and gather information from.
    I am sure many parents need these small details yet do not feel they can ask their Dr about them.
    Keep up the great work and please let Kendall know she has brought a smile to yet another persons face. She is so beautiful and I hope you have years ahead of you all filled with more amazing mlestones and lots of love and laughter.

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