Sunday, September 28, 2014
Monday, September 22, 2014
Its a typical Sunday evening around 7 pm. Marci and I are taking a few rare minutes to sit in the living room and think about what else may need to get done today. The kids are in the den watching tv and everything believe it or not is nice and calm. Suddenly Becca yells to us, 'Can we have a family game night tonight?' Marci and I say sure and told her to go downstairs to pick out a game. As soon as she is out of ear shot I say to Marci, 'Wanna take a guess?' Meaning wanna guess what game Becca comes back up with knowing full well which game it is and low and behold we were right. Becca comes upstairs with Harry Potter clue. We tell her to go set up the game and within seconds we hear Ian's infamous click to get our attention. So time to guess again as to what he wants. Marci's guess is that Ian is going to tell her that he isn't playing. BINGO, we are two for two so far tonight!
So Marci and I go in to the den so we can always be with Ian and somehow someway we convinced him to play or maybe he said ok Ill play. Either way doesn't matter, he enjoyed the time playing the game with us. However, I convinced him to be on mommy's team since its only fair considering him and I always play on the Wii together (Marci isn't very good at it, lol). Let the game begin.
OK now for the nerdy part....
If anyone is familiar with the old version of Clue when we were kids then you basically understand how the game is played. You move around the board going from room to room guessing which character did it, with what object and in what room. However this game is based on characters and such from the Harry Potter movies. So we are playing, having a good time and then the wackiness begins. Becca gets a 'Help Card' Alohamora (allows you to go in to any room whether locked or unlocked). She is very excited as usual because that's a good card to get in the game. But mommy and Ian run out of 'Floo Powder' (little chips that represent what in the movie allows people to move from one place to another via a chimney or Floo (nerdy I know) as its called in the movie. So I start talking in weird voices saying mommy can trade Becca for her Alohamora card and the cost is Ian. Well Ian is screaming no, Becca is screaming no way no deal, mommy is saying that's a great idea and I'm being the "auctioneer." So finally that's settled, no sale. Oh well.
As the game continues and we are all having a good family time together mommy and Ian enter a location called the Shrieking Shack. Again if you have seen the movies its from the movie. Now being the clown that I am, especially with my kids at times, as soon as someone says Shrieking I let out this blood curdling shriek. I catch everyone off guard and we all start to laugh. So, as you can imagine, for the rest of the game any time anyone mentions that location we all Shriek and yes it was loud. Good thing the windows weren't open. By the time the game was over and we were cleaning up Becca was saying something but wouldn't mention that location. She would say something like 'When I went in to that you know Shack...'
It was a great way to end a nice good weekend with the family. These are the kinds of memories Marci and I strive to build each and every day with out family of four for as long as we can. I urge everyone to do the same. Don't complain about how much running around you have to do. Taking care of this or that in the house or outside the house. At the end of what is probably a long busy weekend, spend the time together playing a game, without the tv on or whatever. I'm certainly not saying Marci and I are perfect and we spend all our Sunday evenings like this, very rare actually. But I want to try to do it more often if we really can. If we can do it, you all can certainly do it.
Love you family, thanks for a great family game night!!!
Anyway, my coworker suggested that I try to contact Lego letting them know how excited Ian gets when building Legos with me and how much enjoyment he gets out of doing them. I had never thought of doing that so I went on to their web site and sent an email to their customer service department and PR department. Less than 24 hours later I received an email response from someone saying how delighted they were that their product brings so much happiness to Ian considering his disabilities and the time it allows him and I to bond together. They said they were going to send Ian a special package to him directly.
Well today we received said package and it was great to see they actually took the time to not only reply to my email but to take the time to send something to him personally. It wasn't anything big or extravagant but that's ok, it didn't need to be. They sent him a personally signed Lego Star Wars Clone Wars poster, as you can see in the picture below. They also included a couple of Lego Movie stickers.
So just wanted to give a big thank you to Lego again for taking the time to send my son this personalized poster and for taking the time to acknowledge my email. As the poster says, Keep On Building, which we most certainly will do.
Friday, September 19, 2014
Tuesday, September 16, 2014
VRK1, PCH1A or Spinal Muscular Atrophy with Pontocerebella Hypoplasia... does it really matter what you want to call it, the disease is still a progressive motor neuron one. Affected are the voluntary muscles used for crawling, walking, head and neck control, and swallowing (SMA) along with an unusually small and underdeveloped cerebellum, which is the part of the brain that coordinates movement. In addition, a region of the brain called the pons also fails to develop properly. The pons help to transmit signals from the cerebellum to the rest of the brain. Ian does not have SMA or PCH, but these two rare diseases are used to describe two clusters of symptoms caused by the alteration VRK1.
So knowing all of this monitoring everything is important. We already know the muscles used for crawling, walking, head and neck control have been affected and no longer work. Knowing what we do, means keeping a close eye on the muscles used for swallowong. To monitor this, Ian has had numerous swallowing studies over the years, with the last one over a year ago. We decided it was time to check it out...so today was the day.
We were presently surprised it went well, everything went down smoothly and quickly as it should. They did not see any signs of muscle weakness based on how the food was traveling or any signs of aspiration. As long as we don't see anything concerning we are good for a year. Ian gets to continue eating and drinking by mouth ...woo hoo.
Wednesday, September 10, 2014
Monday, September 1, 2014
The head counselor from Camp Simcha Special Boys posted this on his Facebook status:
Faith is knowing when to act and when to accept...learning to act on what you should not accept and learn to accept on what you should not act on.
This got me to think about a question so many ask in one way or another....how do you do it? For me/us, it is about taking care of our children. Oh trust me/us it is not how we imagined it to be. Being angry all the time is only going to hurt each other and the kids. We want to give our kids the best we can, making the best memories we can and treasuring each moment. This is our life, it may not be easy all the time...heck most of the time it is not easy, but its our life. It has taken both Brian and I a long time to accept that this is our life and the prognosis of Ian's disease...I never quite looked at it as faith.