It would be impossible to say all that I'd like to say about the past few months in just one post. It's a long but hopeful story of a joyful boy with a tummy tube who continues to charm nurses and doctors with giggles and grins before he heads into surgery to dilate his esophagus each month. Henry is still not able to take anything by mouth, but they believe they are making progress (and we are all continuing to search for the cause of the stricture).
But that's really just part of Henry's life. Feedings have become routine, and while I myself indulge in occasional wallowing about him sitting in his highchair 4 hours per day and missing out on my favorite of the five senses, HE remains the happy and curious bright-eyed boy he has always been. And he continues to develop in so many ways . . . .
Thanks to his Early Intervention "Dream Team" which includes an Occupational Therapist, Speech Therapist, Special Instructor and two Physical Therapists (one of whom is an Aquatic PT), Henry has regained the abilities stolen by multiple weeks of illness and hospitalization. And now, we are treading new ground!
Having read the studies on the use of treadmills to increase an infant with Down Syndrome's ability to walk, I was thrilled when Henry's new PT said she had access to one and would like to start using it with Henry. According to the studies, infants with DS walk earlier and more typically if they follow a prescribed routine on the treadmill. Above and beyond walking, other benefits will likely result. The researchers say, "When infants with DS begin to walk their opportunities to interact and play with their age-mates increases significantly. Motor activity-play provides exploration and opportunities for new forms of cognitive development to emerge." You can read the abstract in its entirety here.
I plan to keep a video record of Henry's progress. At this time, he does 8 minutes on the treadmill at the lowest speed (.1), five days per week. As you can see in the Week One video below (his very first attempt), he drags his feet, which is to be expected. Frequent use of the treadmill will jump-start his body's natural inclination to take steps and give him the motor memory to increase the number of steps and eventually walk on his own. I should mention that this should only be attempted at the direction of a qualified Physical Therapist using the proper equipment (don't try this at home, kids). ;) We are very fortunate to have access to an infant treadmill, as my own adult treadmill starts at .5, which would be way too fast. Infant treadmills are expensive and the research is relatively new, which means they still aren't available from most hospitals or service providers. I sincerely hope they will begin to prioritize the use of treadmills for infants with DS and provide them as needed for this very important developmental step!
Here is Henry with his PT during his first attempt on the treadmill:
Go Hen!
FANTASTIC Kara! That is so cool! Henry has been blessed with such a great set of parents...ones that do the research to make sure he gets all the opportunities he needs and have him in the best place to deal with his set of obstacles. Wish you were still here but know God wants you there. Love you guys!
ReplyDeleteYay!! That's awesome! Go Henry!! :)
ReplyDeleteWhoppeee! So wonderful that you guys have access to such a great team of people, and such a great little man who's such a joy:) I was so happy to see your new post in my reader today;)
ReplyDeleteWow that sounds great about the treadmill. Wysdom does not like to put any pressure on his feet and won't stand. I would love to see how things go for you.
ReplyDeleteKara, I continue to pray for Henry and you and Scott. It is great to see Henry's progress. He is blessed to have such loving and involved informed supportive parents. God bless you all.
ReplyDeleteHi
ReplyDeleteMy name is Jenna and i came across your site. Henry is an amazing precious and special angel. He has a great shinning and contagious smile. He is a courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and developmental delays. I love it when people sign my guestbook. www.miraclechamp.webs.com
I just re-watched the video of his first treadmill experience :) It's SO awesome to see how far he has come! And it is quite fitting that he took his first steps on the same day as the farewell of his lil' treadmill.
ReplyDeleteBaby steps...we'll get there ;)
-K