We originally started this blog (years ago) to keep track of the every day things in our lives that we didn't want to forget but knew that we would in time. As life got in the way, we posted less and less until March 2010 when Matthew's arrival rocked our world. Now we use this blog to let everyone know how Matthew is progressing and the big events going on at the Hoy House. We are so appreciative of everyone who has read our story and has thought and prayed for Matthew and for us.
With the Mega Millions jackpot up to over $600 million, the news has been a buzz about the odds of winning and such. If Matthew could play, I'm pretty sure he would win. He seems to always beat the odds.
Odds of winning the Mega Millions- 1 out of 176,000,000
Odds for some of Matthew's uniquenesses:
Intestinal Malrotation- 1 out of 500 babies Missing Thumbs- 1 out of 100,000 babies Craniosynsostosis- 1 out of 2,000 babies Patent Ductus Arteriosus- 1 out of 20,000 babies Horseshoe Kidney- 1 out of 600 babies Microtia- 1 out of 12,500 babies
Odds of having been diagnosed with Matthew's chromosome disorder (4dup25q34.2q)- 1 out of 3,500,000,000 people (yes, that is 3.5 billion).
Matthew defies all the odds. I think I'll have him pick my lottery numbers tonight!
I began collecting PJ Funnybunny books long before I had kids. I first saw PJ on a Saturday morning cartoon special and fell for him because he was a cute, big eared rabbit. I then spotted PJ books when I worked in a bookstore in college, and couldn't help myself.
So, fast forward 15+ years and my PJ Funnybunny collection is finally coming in handy! I am always excited when the kids pick a PJ book for their nighttime story. I was even more excited yesterday when Jackson started telling us his version of the PJ Funnybunny book "It's Not Easy Being A Bunny".
Matthew's feet have always been unique. Many doctors have looked at them, noticed they were unusual, but never really addressed it. When Matthew was an infant, we avoided putting socks and shoes on him because his feet would swell. Either that went away or we noticed it less, until recently. His feet seem swollen again. And thinking it over, his toenails don't seem to be growing either. I can't remember the last time we had to cut them.
I read an article posted through the rare disease support group that was talking about appendage swelling in a child with an atypical venous structure. Although this child's rare disease is much different than Matthew's, some of his symptoms sound a bit familiar. Matthew has swelling in an appendage and an atypical venous structure (found during his heart cath). We probably shouldn't ignore it anymore. So, we went to see the pediatrician to start the investigation.
First, urine test to check kidney function. Thankfully, okay. Second, ultrasound to rule out blood clots. Thankfully, okay. Now the issue is what is next. No specialty claims the peripheral vascular system as their own. Our wonderful pediatrician is trying to find the right person to see next.
I don't want to dismiss this as 'just another Matthew uniqueness' until we know that it won't have any long term implications. In the article I read, the parents were searching for a doctor to help them, because the doctor they were seeing recommended amputation. I can't imagine that Matthew's uniqueness would lead to that, but I want to make sure we are being diligent now so that we don't have to do something drastic in the future.
Yesterday was a great day! We went into the day with low expectations. "What would you like to do today? I don't know, what do you want to do?" So, we lazed around and spent time having a bit of fun as a family instead of trying to run errands, get any to-do's off our list, etc. It was delightful.
We took Jackson outside on his Spiderman bike, which does have pedals (in contrast to his balance bike) and doesn't have training wheels anymore. After a lot of complaining about not wanting to ride, Jackson was riding his bike sans training wheels! He needs a little help starting but he has all but mastered going and stopping.
Jackson riding his bike for the first time sans training wheels
Also yesterday, Matthew decided he would test out walking on his own. Previously he'd walk a few steps if we'd hold him and he'd lunge forward a few steps to get to the other person. He always needed someone to help him start out. Yesterday, he WALKED a few steps to/from the couch. No help needed. It was a beautiful sight! Our sweet baby Matthew has persevered-- and is walking!
Matthew taking real steps!
We celebrated the big accomplishments of yesterday with dinner out at one of my favorites, Freebirds. Surprisingly, all the kids were pleasant, ate well and it was a nice time. A great ending to a great day!!
I recently read an article that said that perseverance was a better indicator of being successful than were skill or talent. If that is the case, then Matthew is going to be a-okay. He perseveres more than anyone I have ever met. It took him weeks of trying, probably dozens of times a day, but he has finally figured out how to climb up on our bed. And who knew that the simple act of walking had 2 dozen intermediate steps? Matthew tries, and tries and tries. And though he is frustrated a lot lately, he very rarely seems to get frustrated at trying, again and again and again.
"It's a phase. It's a phase. It's a phase." I am having to tell myself that about two dozen times a day right now. Matthew is going through the perfect storm of phases. He wants to always be on the move, so anytime he is confined, he flips out. He wants to get into everything, so when he can't, he flips out. He has many, many wants and needs that he cannot communicate, so he flips out. He is going through a bit of separation anxiety, so if he is not being held or if you walk out of sight, he flips out. Matthew is flipping out a lot these days-- with a mix of whining and crying and a bit of grunting.
When he's not flipping out, he is still our sweet, happy baby Matthew. Those moments are just fewer and farther apart these days. "It's a phase. It's a phase. It's a phase." Unfortunately, Matthew's phases tend to last about 3 times longer than they were for Alyssa and Jackson. Should make for a rough few weeks. (Please, not months!) In perspective, this phase is a good thing as it means he is continuing to develop, but it is rough in the midst of it!
