Day 2 and 3 at Home in LG ... It's all about Star Wars :)

We are on day 3 at home, and maybe it is habit but when I skipped writing an update yesterday it felt kind of strange...

I was thinking that there would not be to much reason to write since we are home now and who would want to read about our everyday life anyway? Well, I was informed that for those who I started the blog for as in family and friends, plus of course ourselves since I did start this as a kind of diary to keep track of Connor's JDM and how it impacted us) ... it seems the blog still matters. Not to a big audience but for those that like to keep reading about Connor and us and to me in the form of writing since I do find it therapeutic :)

We are all in a wonderful state of mind right now because once again we were shown what really matters ... not all the distractions around us including Connor's JDM but us being together as a family and just enjoying being in each others company ...

Yesterday morning started out with Connor waking EARLY in time with his hospital habits. He asked right away where Alexander was and kept asking about every 1o minutes for the 1 1/2 hours that Alexander slept longer then him. One thing we found out since Connor was hospitalized is the opposite sleeping habits Connor and Alexander have. Alexander is just like his beautiful older sister who loves to stay up late but sleep in late :) Connor on the other hands goes to bed early and rises early. Ironically now would be the perfect timing to move them each in their own bedrooms BUT we can't due to their 'original planned' bedrooms being down stairs. Stairs as you know are not an option right now and we are not ready even if Alexander said he was to let him move to another floor of the house ...

I would lie if I said everything went smoothly yesterday. Connor went on battle mode when he decided that he does not need any medications now that he is home, well at least not the ones he categorizes as 'yucky'. He made his first move when he spit out the cyclosporine. I have to tell you this was not a good move on his part because I was not going to see him waste medications that for one he needs badly .. but also we just paid $700.00 for. So very nicely I told him where he will be in a few days if he does not take the lineup of 16 medications he needs to take during the next 12 hours, everyday, until the doctors change the line-up .... ... back to the hospital!!!! I think it put the fear in him because he was at his best for most of the day ...

I will write another post about why I keep putting the cost factor in when in fact this is not necessary or true compaint for us. We live what many families go through that are dealing with a disease that knows no cure as of now and we are actualy the lucky ones .. so why I mention it I will explain in the next blog up-date...

The rest of the day played out as followed. Connor and Alexander playing with their whole Star Wars Fleet and Figurines, including all the Star Wars Lego they could fit on the Living Room table. They played uninterrupted for at least 3 hours! The sound of them playing together, sitting next to each other without any arguing was so beautiful I just wanted to freeze the moment.

Connor did ask several times why he can't play and move like Alexander but Alexander, bless his heart, tried to stay stationary as much has he was able to with all the energy he has.

We then had lunch and then took a nap, everyone but Alexander who played quietly in his bedroom.

After nap time the boys finally got their wish of a Birthday Cake for me and were loudly singing 'Happy Birthday' and blowing out the candles for me :) I said before I had the best and most memorable Birthday this year already but I got my biggest wish when we all left the Hospital on Friday behind us.

After Coffee and Cake we played some games Connor learned during OT in the Hospital, Topple, Jenga & Ker-Plunk :) Those are so much fun and if you have small children and have not tried those games look them up. Connor has learned tremendous hand coordination's due to them.

And then to finish the night Connor and Alexander played Star Wars Wii until close to bed time. What made this so much fun was the fact that Connor knew how to get through the levels but was handicapped with the wii controls due to playing PlayStation and X-box in the hospital. Alexander knows the controls but not what moves to make. They made an amazing team and only on certain difficulty levels was I requested to help (high jumps) or Ron had to step in for specialty shooting challenges. We ended the night with Connor coloring none other then Star Wars pictures and Ron and I on the controls while Alexander rooted for mostly Ron - ha ha

So all in all the day was perfection for us and we could not have been happier!

Love,

R A C A