If you have been on the page, you've realized it hasn't been updated in quite awhile. Due to the many demands of life, it has become much easier to do quick updates rather than a blog. Tyler is progressing, doing great health-wise, and expecting a baby sister in January. To view updates you can click on this link and if you are member of facebook "like" the page and you will receive notifications when new posts are created: https://www.facebook.com/gotygo1
If you aren't a member of facebook and want an update or have a specific question, you can comment on this post and I will still get an update and can answer your questions. I'm keeping this page up for one purpose and that is for other families. When a family receives the diagnosis of Wolf-Hirschhorn Syndrome, the first thing they do is google it. I have become friends with families from across the US who found this blog after receiving a diagnosis. They were able to see a smiling and happy boy versus the scary and gloom statistics and outcome they may have received from a physician. Just know: we are here, we are happy, and we continue to cheer "Go, Ty! GO!"
Monday, April 8, 2013
|Then and Now|
Although different than most, our normal is ours and we have grown very much used to it. I would venture to say it's quite different and far less scary than the future we envisioned 2 years ago when we received the diagnosis. Several weeks ago, several family members were over. Noah, a middle-schooler who has done several lemonade stands for Tyler and has a heart the size of Texas was discussing the syndrome with me. Several days later, he is over again and playing with Tyler. He has done some more research on the syndrome and is rattling off facts. I know each of these statistics. I think they will forever be etched in my brain because in the beginning, it's all we had. A percentage. A number. Digits giving us the likelihood of our son being able to walk, dress himself, or survive. That is where Noah stops. "Did you know that if someone has Wolf-Hirschhorn syndrome, there is a 34% chance they will die before the age of two?" he asks. (I did.) A huge grin follows as he knows Tyler is turning two in the upcoming weeks. "Looks like he's gonna make it!" he exclaims. I can't help but laugh out loud at his matter of fact tone and innocence.
Tyler weighs in at a whopping 24 pounds and 12 ounces. This is a giant compared to most of the kiddos. He can sit unassisted. He recently has been working on pushing to sit up and I have attached a link to a video of him working hard during a PT session. He can follow several instructions such as: turn the page, arms up, give a kiss, and open your mouth. He can appropriately shake his head no when asked to do something he doesn't want to do (and does this very often). He can stand with assistance for short periods of time. He can bear weight on all fours for long periods of time and we are working hard on crawling. He recognizes familiar faces. He responds and recognizes his own name. He loves Yo Gabba Gabba. He can sign "more". Tyler is starting to show preferences whether it be to a tv show or toy. It is exciting to us that cognitively he knows what we wants but unfortunately he doesn't have the skills to express those wants. He isn't at the point where his motor skills are capable of doing most signs for sign language and the verbal skills also aren't there. We are beginning to explore alternate methods of communication to ease the frustration we are starting to see. He continues to amaze us and we are excited to see what the next year will bring. Go, Ty, GO!
You Tube video of Tyler during PT
Wednesday, March 6, 2013
I have wanted to write about this topic on many different occasions but didn't know how I wanted to present it. I didn't want to seem like the oversensitive special needs mom. I often wondered if it really wasn't a big deal and I should just get over it but the bottom line is I can't. If you're reading this, I'm assuming we are friends or that Tyler has snuck a place in your heart as he has done with many. That is why I am asking you to join the movement to end the R-word. I won't deny that I'm absolutely sure this word passed my lips many many times prior to Tyler and I didn't give it a second thought. However, now it has meaning. My stomach sinks and my heart beats a little quicker everytime I hear someone use this to describe themselves when they spill a drink or do something less than stellar. I can show you a stack of medical papers that use this word to describe my son. When you call someone a "retard" or "retarded", you are implying that they are slow or did something stupid. You are using it in a negative and degrading fashion. I promise you 100% that there is nothing negative about this guy or his abilities. He loves unconditionally and faces challenges you or I will never understand.
I felt that if I never said anything, I wasn't speaking up for Tyler and I wasn't speaking up for my feelings. I'll end this post with a request that you join the movement to end the R-word and sign the pledge. Share this post and share the website. Be a voice and spark a change. Love to you all.
Sign the pledge here: http://www.r-word.org/Default.aspx
Watch this for a laugh:https://www.youtube.com/watch?v=H-DH9hydzMI
Wednesday, January 16, 2013
Happy New Year! It's 2013. Shouldn't we be riding around in flying cars by now? I hope everyone had a fantastic holiday season. I feel like things are just now returning to normal for us and it's halfway through January. This past Monday we went to Riley Children's Hospital to see if the kidney surgery Tyler had done back in October worked. After some testing, we found out that it had improved the kidney reflux but not eliminated it as we had hoped. The urologist suggested we keep him on his daily dose of antibiotics and wait a year. There is a chance it could improve more on its own. If anytime in the year he has a breakthrough kidney infection or after the year it hasn't improved, then we will do the more invasive surgery that has a higher success rate.
|Ty and Daddy at Riley|
Brian and I attended his annual kickoff event in Louisville this past weekend. For me, it always fun to get dressed up and hang out with adults for a change! I am so proud of Brian for all he has accomplished this past year. One of his goals was to be in the top 50 partners in the whole company and he was recognized that night as he was #47 :)
|Brian and his team|
We are finishing up the last bit of the paperwork process and soon we will have a completed home study. At that point, it could be the same day or several months before we get a call about our new baby boy! Tyler is overall in good health and we are excited what this new year will bring for Team Coffey.
|Happy New Year!!!!|