I will be taking in my nephew, Corwin, this summer. He is 10 and wheelchair bound. He is 60 pounds now, so this will be a challange, but we love him dearly and want to make it work.
I have not been around him much in the last few years as they are in WA and I am in TX. What I hope to get from this site is the support and advice that only other WHS caregivers can offer. I don’t know how to use the site yet, so bear with me!
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Welcome to the family. So far, so good. I’ve had a few inquiries about a ‘help’ guide and plan on getting that out shortly. Please feel free to reach out to me if I can be of help.
Welcome to the WHS family…you have come to the right place to find people who will love and support you throughout this new journey with your nephew. I do not know if you are on Facebook, but there is also a large support network of moms on that site if you also wish to reach out to us there. You can search ‘groups’ for WHS (there are at least 4-5) and find lots of us– perhaps even moms who live near to where you live– as we are all over the continent in every country. My name is Laurie Sedlazek-Hunter, in case you wish to seek me out. Otherwise, although I am rather new to the world of WHS (my daughter Kaylee is just a year old), I am here to offer you all of the support I possibly can! xo
Hello, My name is Tina, I am the Mother of Kailey Rose, Who also has WHS, She is 18 yrs. She only weighs 58 lbs. She has been this size for at least 3 yrs. There was a time when we would take her to the RIVER for some fun in the sun and Boat… The HEAT was a factor.. the LONG drive…It would have a change on her eating & sleeping a bit.. But she would champ right through it. Now shes just a part of it all. I KNOW from learning from FAMILY Just the sight of the WHEELCHAIR is scary. In raising My GIRL, MAYBE I have Gotten use to it all or MAYBE it’s always been NO BIG DEAL. SHE loves the outdoors, SHE loves swimming, Kailey always has a GREAT time anywhere. And when she gets mad , just like any other Teenager throughs a fit and goes to her room. The only difference with taking on this Vacation your taking is , YOU have to be more hands on, You have to treat the child like a BABY, Cutting food, Meds, Drinking, Changing,Bathing, ETC. OUT of ALL my KIDS Kailey is the EASIEST. doesn’t care what she eats, What she WEARS. HAHA YOUR GOING to have a GOOD TIME! Corwin will be the CENTER of ATTENTION. And LOVE every Minute of it. RELAX it’s going to A GREAT FAMILY Memory… HAVE FUN 🙂
We live in Temple Texas and my son is 10 years old. He uses a wheelchair and a walker. We take Jake kayaking and out for rides on the four wheeler. Jake can sit up on his own. He really enjoys swimming at the lake. He requires assistance when swimming. He has to have his food pureed, and needs help with feeding. A schedule works great for him. He has set times that he eats, naps, and sleeps. He likes the predictability. If you need anything don’t hesitate to contact me. I know of a family in Killeen and one in Dallas. There are actually several families in the Dallas Fort Worth area. Where do you live in Texas?
We live in Burleson, just south of Fort Worth. We will be getting him in June, after school lets out. He doesn’t walk at all, or even sit up on his own, so activities are kind of limited. My younger two (4 and7) arealready making plans for taking him on walks around the neighborhood and fighting over who gets to push his chair. It’s very sweet! My oldest is 13, so she remembers him the most and is happy to help out, too. My mom also lives nearby, so she will be very helpful as well, especially on the days when I need a break!
Maybe some of the other DFW area parents can recommend Dr’s in the area? I know he needs a GI dr. and a neurologist, even though it’s been years since he had a siezure. We’re close to Cooks Children’s Hospital and I hear that it’s one of the best in the area.
Melissa, your family is very special for taking on such a large challenge. I sometimes wonder about what this means to the other children that grow up around children with disabilities. I have 2 others near the same age as Kendall and it’s something that’s always front of my mind.
I hope that it reminds my children to be thankful for those small things that we tend to take for granted, like our health. I don’t want to say that they are entirely spoiled, but like all children, they tend to complain when it’s time to come in from play or time to do chores or homework. I hope that some of Corwins happy disposition rubs off on them; he truly is a very happy child!