On January 16th, Kailyn (aka: Kaylee) turned 2 years old. I will confess that it was a bittersweet day for me. While on the one hand, I could tell that she had grown significantly since last year~ developmentally, there was this feeling that she was still pretty far behind…even by Wolf Hirschhorn Syndrome standards. I know that “all children will develop on their own timeline,” and I understand that “when Kaylee is ready to _______, she will.” Although I sometimes find myself worrying about the future more than I enjoy the present, I can definitely say this for a fact: my daughter is changing me and my views about what matters in this world.
Now…let’s talk about how SHE has changed from 2011-2012.
To begin, since getting a g-tube in May of 2011, she has gained over 6 lbs. I know that for a typically-developing child, that is a one-month gain, but for our kids who grow so slowly, that is a tremendous feat. She went from being on the 40 %ile on the WHS growth chart to the 80 %ile in one year. (Of course, she is not even on the “typical” growth charts. lol) She literally went from wearing 3-6 month clothes at the time of her surgery to now wearing 12-18 month outfits. In fact, I have a virtual wardrobe of brand-new 6-9 month outfits that she never even wore; she kind of glossed right over that size overnight!
See for yourself what a difference a year makes:
Kaylee at 1
Kaylee at 2
Her hair is continuing to grow at warp speed~ I can braid it, put it up in two pigtails, use multiple barrettes~ I’m having fun! She is reaching for, grasping at, and holding toys for longer periods of time using both hands. She FINALLY is getting her front 4 teeth. She got her top and bottom molars last summer, and I was beginning to worry that maybe that was all she was going to have. Hopefully with more teeth, she will begin to show more interest and desire to chew solid foods. And speaking of eating by mouth, right after her surgery, the specialists at CHOP forbade her to take anything orally. She was at great risk for aspiration since she lost her sucking reflex, and until our speech/feeding therapist said otherwise, she was exclusively tube-fed. Now, however, she is beginning to swallow purposefully and is able to be spoon-fed Stage 2 and, when Mommy is feeling daring, Stage 3 foods. Thanks to this network of moms, I also know how to supplement her foods to maximize calories and alleviate the concerns of constipation. 🙂
Some of you know that after Kaylee was born, Mark bought me a Pandora bracelet to commemorate her milestones. Well, this year we added a few, but the one that made me most excited was the one for her ability to roll from back to stomach and push up on her arms. It was the sign that she was getting stronger and developing an awareness of the world around her. She still does not like tummy time for very long, but her tolerance for it has improved, and as a result, her neck strength dramatically improved.
This was also the year she was fitted for her new seating system and stander. I am blessed to have an incredibly knowledgeable physical therapist; she has worked with many different systems for children with a variety of special needs, and she directed us to the products that she feels will benefit Kaylee the most for the short and long term, given her particular strengths and weaknesses. We ended up with the Snug Seat x-panda seating system. I love this because unlike a traditional wheelchair, the seat is removable and can be placed on a wheel base or a high-low base, serving two functions in one. Of course, we got the seat in hot pink. Kaylee prefers to be in her chair than anything else; I think she likes that she can be upright– as opposed to her swing where she is in a constant recline– and because the base has wheels, she can be at the table with us for dinner, playing in the living room with her siblings, in the kitchen while I make dinner, anywhere the rest of us are…all without taking her in and out of her chair. 
The stander is also by Snug Seat– the gazelle. Kaylee JUST had it fitted for her this past week, but she is already adapting to the feeling of being on her legs. I pray (and pray and pray) that she will learn to stand independently within the next year or two. 
Of course, no one goes through a year without some disappointments. Kaylee was fitted for hearing aids this past summer, and I admit that I have not been very good about using them. Not only do they not stay in her ears well, but I really do not see a significant difference in her ability to hear with them or without them. She had a sedated ABR at CHOP in December, and it was determined that she had moderate to severe hearing loss; they believe that it is at least partially structural in nature. She also has fluid in her middle ear, but the ENT will not consider ear tubes at this time~ something about the upkeep and maintenance of the tubes since it requires a microscope to actually see to her eardrum. (sigh) This frustrates me because, while I understand the doctors’ position on this, it leaves no options for draining the fluid~ which, if could be done, might change that moderate to severe diagnosis to a mild to moderate one. It would also make hearing aids more effective and purposeful…leading to one day my hopefully hearing words from her lips instead of just coos and giggles. Still, we go back to Audiology this week to recalibrate the hearing aids. As something is better than nothing, I vow to use them more frequently with her this year.
Overall, my little girl is doing well. She may not be as far as I would like for her to be at this age. I confess that it is still difficult for me to see little girls her age doing the things that “typical” 2-year old girls do. I also confess that even within our WHS community, it is hard to see children younger than Kaylee hitting the major milestones I eagerly await for her. Yet, I am also happy that she is as healthy as she is, and I am happy that she is as happy as she is. Her smile melts the sadness away; her giggle brightens my days. She is my and her father’s angel, and together, we are looking forward to another year of good things for our little jellybean!
If you enjoyed this article, please consider sharing it!
Love hearing about Kaylee and it makes it extra special since at this moment she is the only one Livi and I have met. She looks amazing. And as her progress is slower than you would like she is hitting milestones. She looks grown up in her stander and will be walking before you know it. Can’t wait to see you two. Hopefully over spring break
Laurie, I loved reading this and seeing the adorable pictures. Kaylee has changed so much this past year and is doing fantastic! I too know the feeling of seeing and hearing about younger WHS children hitting milestones before Dylan but then I look back at all he has accomplished and overcome and I am so very proud as I know you are of Kaylee, but it is still hard for me. I try not to feel sad but we all have those days. Happy Birthday sweet Kaylee! Sending so much love to you all.
She is such a beautiful girl. I especially love the picture of her on the bottom left. Look at her playing with her feet! I was so excited when Frank started doing that. I know it’s easy to be discouraged when looking at all that other kids are doing, but I really think it sounds like Kaylee has come a long way in just a year. Thanks for a great update.
She is beautiful! Could you please share the strategies you learned for her weight gain? Our daughter is 8 months, and she is only 11 pounds. I haven’t gotten any advice about supplements that work, and would love to hear what mommas have to say.
Heather~ 11 lbs at 8 months is amazing! Kaylee weighted 11 lbs at a year and a half. The best supplement we use is called Duocal. It is a powder that can be added to formula, foods, drink, anything to add additional calories. I add two scoops to her feed bag every night, and mix it with her solids. I also have tried adding melted butter, sour cream, heavy cream, and coconut oil to her foods to add calories. The only downside to that is that sometimes her stomach reacts and she will vomit and/or become constipated. I still have to figure out the right balance. She is not a fan of avocado, but many moms have tried that or smashing/pureeing it with bananas for calories. I also give her an Omega 3,6,9 oil supplement which has calories, and good old olive oil is always a winner. 🙂 Hope this helps. Lots of luck and love to your daughter! xo
I have read all your Kaylee posts and I think she has made tremendous progress. You compare her to children who seem to be making more progress than she is and you are disappointed. I compare her to Rochelle who progressed much slower than Kaylee and I am amazed. I encourage you not to compare her to anyone with or without WHS. She is like other children in some ways and different in other ways. She’s wonderfully unique. Continue to enjoy her just the way she is.
I just read all of your posts, and I am so glad to hear that she is doing so well. My son Nathaniel is 20 months and he seems to be at the same level. He has a temporary stander and he does NOT like to be in it at all. He was able to tolerate it for about 45 minutes at first, but now cries and cries after 10 minutes. I am interested in the seat. Nathaniel LOVES to be carried and there are 6 people in my household, so he knows that if he cries enough he’ll get picked up…..he fails to realize that we’re onto him. Your baby girl is beautiful!
Your daughter Kaylee is just breathtakingly pretty. I had just read a heartbreaking story of a disturbed mother of a child with Wolf-Hirschhorn syndrome who did something entirely unthinkable. May God have mercy on her soul. I had never heard of the syndrome so I google imaged WHS. Of all the images your daughter’s stood out because of her incredible gift of beauty. What a photogenic baby! Congratulations for doing such a beautiful job mothering her too, and helping her grow into the little darling that she is. That is the kind of beauty that really matters. She is blessed and you are blessed too. I really wrote to say that I think she could model. I have seen down syndrome child models in just regular print ads for all sort of products. The last such ad I saw was for very glamourous shoes. Your Kaylee could get work! She is gorgeous and the camera loves her.