"Once our eyes are opened, we can't pretend we don't know what to do.
God, who weighs our hearts and keeps our souls, knows what we know,
and holds us responsible to act." Prov 24:12

Thursday, February 24, 2011

Shriners

I had mentioned in the last post that Sasha had some other big changes in the last month. One of those is that we took our first trip up to the Minneapolis Shriner's Hospital a couple of weeks ago. What an amazing experience that was. It was just so nice to be somewhere where the doctors and the staff know what to do with Sasha. They have worked with a handful of kids like him and that fact that Sasha is a congenital quad amputee didn't phase them one bit! I cannot tell you how wonderful that was. Most people we encounter have no clue what to do with Sasha so it was nice to be somewhere where they have had a lot of experience with kids that have the same limb differences.

It was also nice to be somewhere where Sasha did not stand out and get stared at. Let's face, most places, if not all places we go, Sasha stands out in the crowd and we get stared at a lot. We have a small idea what it must feel like to be a celebrity since Sasha has been home because we simply just do not go unnoticed in most places anymore. It is an odd occasion if we are not getting stared at. In fact, it has become so normal that I even forget about it now. Most of the time I don't even notice it anymore but sometimes I will catch myself thinking "Why in the world are those people staring at us?" I forget that they are staring at Sasha because to us, he is a normal child, and not someone that would receive all these stares and attention. As I have said all along, I do not think of Sasha as being disabled. I just don't see it. I know I get funny stares at myself when I say this but in all honesty, it is true. To me, he is our son... a normal, adorable two year old just like our other sons.

Anyway back on topic, at Shriners, Sasha does not get stared at. Every single child there had some sort of limb difference, prosthetic, etc. At Shriners, for once in his life, he was a normal two year old. I cannot tell you how wonderful that feels because we treat him that way but the reality is, most of the world doesn't. So it is nice that we have a place to go that he can feel that kind of normalcy that I am sure in a few years he will most definitely crave to some degree.

The information, the plethora of information, we were given there was wonderful as well. There are so many resources out there for us, some we already knew about and a lot that we didn't. This visit was more of a getting to know Sasha visit so we didn't try out any new gadgets, prosthetics, etc. Right now, he is still too young for a lot of the stuff they have planned for him to try in the future but it was still wonderful to hear about all of his options. In six months, we will go back (as of now, our treatment plan is to go once every six months) and they will try and fit him with a type of prosthetic referred to as a stubbie. This type of prosthetic, used on his lower limbs, won't add any height necessarily but will give him the ability to walk and be upright. If he likes them and wants to use them, I can see these being extremely nice. He can interact more with his brothers and peers by being upright and will be able to get around easier. But it all depends on Sasha. If Sasha wants to use prosthetics we are very supportive but if he chooses not to, we are going to be just as supportive. This kind of leads into one of my future blog posts about how we feel about prosthetics, etc. so I won't go into any more detail about all of that right now.

They also gave us an number of ideas about ways in which he can gain more independence in a lot of areas such as the bathroom for instance (which I know will be so important for him). It was just so nice about hearing about all our options and knowing that he has so many options to help him gain independence! They also said they can custom make him some flippers for the water since we swim so often. How cool is that!

Let's see what else. I know I am leaving so much out because we received so much wonderful information while we were there (for 4 hours), that there is just no way I could fit it all into this one blog post. So, just a couple more things. They said that Sasha may be a candidate for a surgery later on down the line that will free up his little humerus bone that he has on his limbless side, the right side. On that side, he has a very small humerus bone that he moves around all the time and wants to use. In fact, if we are holding him in a certain way, he will grab onto our fingers with it! It is pretty neat actually. When they examined him, they said that they might be able to free it up so that it is not trapped behind all the layers of skin, fat, tissue, etc. By doing so, he could then use it like he wants to now. He could push buttons with it, hold onto us with it... all sorts of things, so that it pretty exciting. We'll see how that pans out. And finally, in a few weeks, we head back up to the area to pick up Sasha's new customized mini red power wheelchair!!! Pretty exciting. That is about all I can tell you about it right now because we do not know much. There will definitely be a post about that in the future.

Other than that, we had a wonderful mini vacation together. My mother flew in to stay with Heath and Brooks while we were gone so it was just the three of us. Let me tell you... Sasha loved that. Not to say that he doesn't totally love and adore his brothers but as all kids probably like once in awhile, he thoroughly enjoyed that one on one time with his parents. He was smiling ear to ear most of the time. In fact, his wonderful disposition and smile won everyone over at Shriners. They all fell in love with Sasha. Here are a few pictures from the trip (you can just see how happy he is!).

Sasha loves going anywhere in the car. He just loves being out and about. He doesn't even mind long road trips and on this trip, he was especially happy because he had his mama and daddy all to himself. Can you tell this by the next three pictures?!









I don't know who enjoyed all that the Shriners waiting room had to offer more, Sasha or his daddy...



Sasha has a small cube like this at home that he loves, so when he saw this gigantic one at Shriners, he was pretty excited!



Sasha & his daddy enjoying dinner at IKEA. I think that was his dad's second plate of meatballs, he really enjoyed those $3.99 platters!



Sasha & Mama enjoying the sunset & dinner at IKEA.



So happy right before bedtime at the hotel! Then we got him all bundled up in his jammies, snuggled into his pack-n-play, and we all laid down to sleep... and the next thing you know, Sasha puked all over himself and the one set of crib sheets we brought! Nice! I guess his tummy didn't agree with traveling because he was fine after that. Not a fun experience though, LOL!

3 comments:

  1. He's looking so grown up and so healthy! And as beautiful as always.

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  2. Ok, well IKEA is 8 minutes from my house! Please do drop a note the next time you're in the area. I'd love to gove Sasha a squeeze, and let you meet Axel and Angela!

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  3. Wow, Sasha is growing, developing, and changing so much! He is so adorable, and he looks to be so happy. I'm glad that you had such a successful and optimistic consultation. How wonderful!

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