After sleeping literally all day Sunday and sleeping in pretty late yesterday, Noah finally perked up. While it made me sad to see him so worn out from Saturday's fun, I am very thankful that he was just tired and not getting sick!!
Our physical therapist left her steps here for Noah to practice on and yesterday he had a GREAT time getting down on the floor and playing with Mary Faith for about 2 hours. He was able to spread out all of his Imaginext forts and castles and really enjoy playing with them in ways that aren't possible on his bed.
Today he had physical therapy and he really wowed Miss Kim by zipping up and down those steps like a pro! She laughingly said that she had written mastery of the steps as a 6 month goal just last week and she's going to have to go back and rewrite those goals now! He's not able to be completely independent with the steps and never will be. They are intentionally designed to need an adult or teen to set them up help hold them stable for him. This is an essential safety feature - with 2 drain lines and 4 - 6 IV lines running at all times, it's simply not safe for him to think he can just zip down the stairs whenever he wants to! Having said that, he is already as independent as he can possibly be with the stairs - just a week ago he was a bit tearful, worried, and shaky, but now he's managing smoothly with almost no verbal cues.
Once he got on the floor for P.T., he didn't want to get back up into bed so we pulled down a bunch of his castle toys again. His nurse moved his IV pole into the middle of his room which opens into the kitchen. Next thing I knew he had scooted into the kitchen on his bottom and was happily making a mess with my onion and potato bins LOL. It reminded me of the sort of mischief he should have gotten into as a toddler but was never able to! Having made it into the kitchen under his own steam, he decided he wanted to go all of the way to the family room. He scooted in on his bottom and had a BLAST! Sarah got down her mouse cage and let him feed her mouse, then she got out her bunny for him to play with. He and Sarah and Mary Faith all got into Mary Faith's tiny little princess castle pop-up, spread out a blanket and had apple juice popsicles for a "picnic," and watched movie on his iPad. It was so, so cute and he had such a great time. He's zonked out now and I have a feeling he'll be having a LONG nap. :-)
Tuesday (a week from today) he goes to get his supra-pubic changed in the O.R. at Greenville Memorial. His urine is getting dark and is getting sediment in it which is often an early warning sign of an infection, so I am very thankful that we are getting this line changed. Here's hoping that a new, sterile line will be just the ticket to more happy, infection-free days! Please pray for peace and a lack of fear for him as well as for safety. Also pray for logistics. Jeff is teaching that day and since he's hourly, he can't afford to take the day off. While I've driven the bus all over town, I've never driven it all of the way to Greenville. It's a little overwhelming to think of doing this all without Jeff. I know that sounds wimpy, but we do this every month and have our little routine all worked out and I love just knowing that Jeff is there with me for moral support as much as practical help. I am so thankful that he has teaching hours - I just wish he could be in two places at one time LOL.
We've found a local dialysis center with a large, wheel-on scale and they've agreed to let us bring Noah in anytime for a weight check. I'm hoping to do that this week. It's been impossible for us to weigh him unless we are at the GI or endo offices in Greenville or if he is admitted to the hospital. Only large wheel-on scales or built-in bed scales will work for him. Some days it really seems like he's lost some weight and other days it looks like he's gained, so I am eager to see what is really going on. I have a couple of fun outside crafts I've been wanting to do with him so I'm hoping we can get out early tomorrow while it's cool, do our crafts, head to the dialysis center, then head to the library to sign up for the summer reading program before it starts raining here!
Don't forget we have our Lily's Chocolate giveaway going on - you can enter just by leaving a comment on the original post here, and you can get an extra entry by buying a Praying for Noah bracelet and/or magnet (details in the right sidebar). Proceeds from these all go to a "Noah account" (as do donations made through the button on the blog) and unless the donor directs us to use the money differently, we keep it set aside for things like gas/food in Greenville, uncovered medical expenses and supplies, and when funds allow we use them for inexpensive activities, small rewards after surgery or hard doctors visits, etc. I would really love to build up Noah's account a little so I can splurge on a few fun things for him to use on the floor. A friend suggested a scooter board so he can move around more easily. I'd also love to get him a little shopping cart and some play food/dishes. He is fascinated by food and wanted to take my onions and potatoes to bed with him because they were his "groceries." :-) We have a little play kitchen that was Hannah's when she was little, but we put it in the basement when we turned the playroom into Noah's room. It upset him to see Mary Faith playing with it when he was no longer able to do so. Now that he CAN get down and play with it, I'd love to restock it with accessories and get it out for him. It would also be loads of fun for him to get a pop-up tent/playhouse that is bigger than Mary Faith's teensy one. None of these things are remotely necessary but would be fun for him, and if we sell some wristbands/magnets we will probably use the money this way or for anything else his therapist feels would encourage him to be active and moving on the floor.
Thank you to everyone who voted/shared my blog post for the Dare to Hope Foundation blog contest here. It does not seem likely that Noah will win which is absolutely FINE because the person who is strongly in first place happens to be one of my dearest friends and I love her little boy dearly. He wasn't expected to live past the end of 2012 and is getting weaker by the day. It absolutely thrills me to think of his mom splurging on a bunch of Legos to bring some joy to this brave, amazing little boy. All the same, I do appreciate all of your support. The contest runs until Saturday so it's not over yet, but as far as I'm concerned it will be just as awesome for Joshua to win as it would be for Noah!! What a blessing to know that so many people love both of our boys! You can see all of the entries here. (Should Noah win, I'd like to use the Amazon card to get some of the items I listed above.)
I'll update this weekend with a winner for our Lily's Chocolate but then probably won't update again until after Tuesday's procedure. Of course I will update sooner should any urgent need arise.
Thank you again from the bottom of my heart to everyone who reads here and who loves and prays for our boy. I can't say it enough - it really, really does mean the world to us!
Blessings,
Kate
