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Welcome to Henry's Web Page. It has been provided to keep people updated about Henry. In January 2002, Henry was diagnosed with having the Hurler Syndrome. This website is intended to share our journey with you.
Journal
Thursday, January 6, 2005 12:16 AM CST I am hoping that I can write this update without getting "bumped off" my connection. The computer doesn't like me much anymore. I hardly update anymore, just because things seem to be getting better and better. Really, there's not much to say. Thank goodness.
Henry is attending PPCD (Preschool Program for Children with Disabilities) 5 days a week. He is not currently attending private therapy, although we want him to start again now that we are in 2005 and in a new insurance year. We probably will do hippotherapy again (using a horse for therapy lessons) since it seemed to really be a great tool and resource for us. Plus Henry enjoyed it and really made forward progress last year when he rode.
We are in the middle of getting Henry's hearing reevaluated since it has been over a year since he first received his aids. He is starting to speak. Not clearly, but really really trying. He has lots to say! The reason for the reevaluation is Henry's volume issue. He is SOOOOO loud. We tell him all the time, "Quiet." He tells me, "Daddy Quiet," which means: Daddy tells me to be quiet. I laugh and say, "Yes, Daddy says to be quiet."
Henry still seems to be "stuck" with his food explorations, or lack thereof. He eats the same 10-12 foods each day. One would think he'd trust us enough, or at least his sister, to try something new. So...we stick green juice (purified veggies in power drink) in his sippy cup. You'd also think he'd rather try a slice of pizza, a taco or a hamburger before he'd drink that, but whatever! Victor tells me all the time that I should find other things to worry about. So...we prepare the same things each day. Oh, by the way, Henry doesn't object cookies or candy. HA, he is smart enough.
So, school is great, Henry is very mature about getting on and off the bus each day, and he adores Dora the Explorer. We are waiting to hear back about our detailed plans for Henry's 3 year post-transplant visit in the next month. We will learn what tests Henry should expect. The last month's visit to Cook Children's in Fort Worth, Texas was so special. For the first time ever Henry could clearly say, "Dr. Howrey." This is something that we are so grateful for. We have waited 4 years to hear our baby talk. Now he is having fun with life.
PS. The readers must think that our family really likes to eat since all the pictures are of us eating. It is true, we do and unfortunately, it is starting to show. Time to hit the treadmill. Thanks for checking up on Henry. God bless you.
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