Happy 4th of July

It's been a few days since I've updated. This week has been going pretty good. The new struts seem to be much easier to turn, and are working well. Jack is tolerating the new foot brace, however, I'm not sure that it's working all that great. His foot still is definitely dropping and he is tolerating little to no pressure on the bottom of it when we try to push it up. His PT tried to work on it Thursday and he was in so much pain he was crying (something he's never done at therapy before). At this point, we're just hoping the brace prevents it from dropping any more. We see Dr. Kogan on Thursday and are very anxious to hear what her thoughts are. It's causing several problems right now. Mainly, as his leg grows his foot is now dragging. He is tripping constantly, which is very painful on his foot and leg. We're very concerned about how he's going to tolerate weight-bearing (walking) on that foot when we get to that point. It's going to be difficult at first, I really hope Nicki (his PT) and we are ready for it. I'm not even sure how we would put a sneaker on that foot, and measure him for any small shoe lift he may need (probably a 1-1.5 cm internal lift).


So.....a little bit of worries on our mind at this point. Jon said the other day, "let's just make it to Thursday and then we can come up with a plan with Dr. Kogan." On Thursday, he will be at 43 cm....to recap, our inital goal was at least 3 cm, hopeful to get 5 cm, thrilled with 6 cm. At this point, I think Jon and I are okay with stopping before 6 cm. The risk of damaging that foot any more is just not worth it....it would be like taking one stop forward, and then one step back. I would love to make it to 5 cm, which is 2 more weeks. I know that doesn't sound like much, but to us....2 more weeks is a loooooong time.


The pin infection is still there. The antibiotic seems to make it better, but not clear it up completely. He isn't complaining of any pain and doesn't have any fevers, so we aren't worrying about it. Sleeping-wise, he has his good nights and his bad nights. His attitude is so adorable, I wish you all could just hear him and his comments of "I never give up" "I just keep trying". Jon and I are amazed at the things he's willing to try to do now that weeks ago he was petrified to even think of trying. He's turned into a little monkey and by bedtime, his arms are exhausted! He'll be happy to show anyone his "bumps", which is what he calls his arm muscles.


So, that's where we are today! I think overall things are going very well. There are several risks in this process....and it seems like we are facing all of them :) HOnestly, I think it's VERY rare for someone to undergo this and NOT face these obstacles. As long as I know it's all normal and there is a treatment plan, I can handle it!


And now on to the fun stuff.....Max has been playing tball for a few weeks now. He loves it so much, and Jon and I get quite a kick out of watching him. He is very serious, but does sneak a peek to smile at us occasionally.

He is quite the fielder.







Ready position.



Rounding into home.




In this last picture, he is making his fishy face. It comes out when he's concentrating. I think the other team's heavy-hitter must coming up to bat.


Jack started art lessons this week, which he loves. He brought home a picture that was truly an artistic masterpiece. :) No, really....it was a very cute solar system picture that we are going to hang in his room. I think it's really nice for him to have something to leave the house to do that is not therapy or doctor-related. He has the lessons with 2 friends of his, and that's something he really looks forward to!

We took the boys to the waterpark yesterday. It was fun, we stuck to the lazy river and wave pool, there was no way I was letting Jack go down the slides (much to his disapointment). The boys loved the wave pool, Max was belly flopping into all the waves. When they turned the waves off, the boys loved swimming around. Jack was swimming back and forth from Jon and I, we were amazed that he could do it. He kept saying "I never give up mommy, I never give up." They both crashed in the car on the way to pick up Mia from my parents house, ahhh....love that swim-induced nap that kids take!

And here's a funny picture from a couple of weeks ago. Jon sprayed the slide down with the hose. He decided to turn the hose on Jack, which obviously Jon thought was hilarious. What a guy....spraying the handicapped kid in the face when his walker is 10 feet away. No worries though, Jack can handle himself and has been plotting revenge ever since. Super soaker, anyone???