Hayden is 7 years old. What a little miracle this little guy has been to us! I am so proud to be his mommy!! Hayden can sit independently (started at age 2) but can not get into sitting by himself. Hayden started to weight bare at age 4, and at age 7, he took his first steps.. he does not have balance and needs assistance. He is sooo happy. He loves music. He has a g-tube, but drinks from a bottle each day and eats pureed foods. He does not hold anything except his hands and feet and occasionally will grab his g-tube. We are still waiting on the day that he finds his favorite toy/item. He makes lots of noises/sounds but has no words. He does sometimes make the “ma” and “da” sound. He wears glasses, he has cortical visual impairment. He only has one kidney and has been diagnosed with chronic renal insuffiency. Hayden’s seizures have been pretty bad. He had a focal seizure at 6 months old and Tonic-Clonic seizures (I think this is the type he has)started at 13 months old. Hayden has a brother, Braylen, 4 years old. Braylen thinks Hayden is the GREATEST thing ever!!! Hayden has made me the person that I am today! I am glad GOD chose me to be his Mom!!
I think this blog is a great idea! Thanks Kevin for setting it up and inviting me to join! I am excited about all the WHS families that I have been able to meet!
If you enjoyed this article, please consider sharing it!
Thanks for posting Tiffany. I’m excited to hear more about Hayden.
As Hayden’s PT, I would say that you are an AWESOME mom! I love trying to figure Hayden out! I know that he does best with repetition… working on similar tasks over and over again. He tends to understand what I am asking him to do with repetition. Thanks for sharing him with me!
Hi Kim. Welcome to the site. I hope that you are able to find information out here that is valuable to you and your insight into WHS. I know each kid is unique, but having some background on what other parents face may be good information for you in understanding this syndrome.
Thank you Kim for joining our group! You are an important person to our family and we LOVE you!! Thanks for all you do and for being so involved with our sweet Hayden!!
hi my name is brenda i am new to this site i have a 13 month old boy named liam with whs and its exciting to find others like him so i want to thank u for givin your support to us who are new to the site bye