In the category of loving life, I have quite an amazing story to tell! As you probably all know, Noah did not win the Great Bike Giveaway. We are truly happy for the children who did win and are thankful beyond words for the support Noah received. I have a friend whose daughter Claire was also in the contest, but for a different bike. We met Claire and her mom years ago at the Ronald McDonald House in Atlanta. It was the first time either of us had actually met another family who had a child with mito. Claire is a little older than Noah but their disease progression has been fairly similar and it's been a blessing to know someone who understands what this life is like.
A day or two before the contest ended, Claire's mom got quite a surprising package - an anonymous donor had purchased the bike outright for Claire! The next day, Claire ended up winning the bike contest by random drawing and her mom decided to offer the bike to Noah!!
This bike is very, very fun looking but it does not compare to an adaptive bike. It's very similar to the old-fashioned Green Machine bikes we used to ride as kids. (If you don't know what I'm talking about, check out this cool vintage ad here: http://www.tomheroes.com/Comic%20Ads/toy%20ads/green_machine.htm ) With modifications, this bike will work for Noah short-term. Claire will be using hers short-term to bridge the gap until she can get a custom, truly adaptive bike and Claire's mom suggested we do the same thing. This bike will allow Noah to experience pedaling a bike and possibly build up some endurance so that he'll be even better prepared to ride an adaptive bike when that becomes possible. Claire's mom is a physical therapist and she's talked us through how we'll have to modify the bike and how we'll have to work with Noah to get him on and off the bike. (The seat is only 11" off the ground and it will be extremely challenging for him to get on and off - but he's certainly motivated and I know he'll rise to the occasion!)
We are thrilled and thankful and so excited that this all worked out. We are still pursuing an adaptive bike simply because if/when Noah gets any weaker, the clonus (neurological shaking) in his legs gets any worse, etc. he'll be simply incapable of riding this type of bike no matter how we modify it. We've spoken to Noah's physical therapist and she agrees that this should be a workable short term opportunity for him to get some bike experience. She's also assured us that if we manage to get Noah an adaptive bike in the future, she will find another child in her practice that we could bless with this bike.
Another blessing I may not mention often enough is the amazing care that Noah gets. We are so incredibly thankful for all of the wonderful people in our lives that allow Noah to live the life he lives and allow me to be "just Mommy" sometimes without having to do all of his medical care. Our pediatrician, Dr. B., is a frequent visitor to our home. He's the sort of "old school" doctor who doesn't rush out of our door after doing the medical stuff - he's always got some funny story to tell to the other children (who LOVE it when he comes) and always has time to check out whatever big play adventure Noah's engaged in. He's committed to our goals of having Noah live the most normal, typical life possible.
Our nursing agency does a terrific job keeping us staffed with nurses 8 hours a day, 7 days a week. Having these nurses in our home allows me to be more available to everyone in my family. They are our front line of defense and their vigilant care is what often alerts us to the fact that something isn't as it should be. While I still participate in Noah's daily medical care even during nursing hours, it's a blessing to know that someone more qualified than I am is in my house all day.
Noah also gets physical therapy and speech therapy in our home every week, and we're blessed with brilliant, creative, loving therapists who have helped Noah reach goals others might have deemed impossible.
Last but not least, we absolutely love our hospice team. (New readers - Noah is not dying. Pediatric hospice in our state allows for life-extending and life-saving treatment and bears no resemblance to typical end-of-life hospice care!! Our hospice team is dedicated to Noah's life and they help ensure that he has the highest quality of life possible.) Noah's hospice nurses come out to our home at least twice a week and are available if something goes wrong outside our regular nursing hours. (One of his hospice nurses recently figured out that he could enjoy cotton candy since it just dissolves in his mouth, and she is now his regular cotton candy supplier LOL. We won't tell his dentist . . .)
While each part of Noah's local, in-home team is fantastic, they are made better by the fact that they work together seamlessly. We know that the sort of unity we enjoy is sadly rare and we never take it for granted. Noah's specialists are also wonderful, but his pediatrician, nurses, therapists, and hospice nurses that are in our home every day are really what make his care work as well as it does. I'm fully qualified to care for Noah, but I'm not a nurse and I love knowing that Jeff and I don't have to make judgement calls or decisions alone. I truly wish every medically complex child had access to the kind of health care that has blessed our entire family so much!
Now you are probably wondering what the "blueberries" part of the post title means. :-) I just thought I'd share some Noah cuteness with you. I use literature-based themes for Noah and Mary Faith's homeschool and right now we are doing Blueberries for Sal. Noah is responding really well to this approach and today he had SUCH a blast playing through the storyline. I've fallen out of the habit of taking lots of pictures during schooltime, but they had so much fun today that I had to grab the camera!
I found some little tin pails in the dollar bins at Michaels, so I got Noah and Mary Faith each their own pails. After they finished their table work this morning, I had them go to the family room where they were delighted to see "blueberries" (AKA blue pony beads) all over the floor. Sarah had also arranged a number of stuffed bears around the room to add atmosphere LOL. They picked blueberries, dumped blueberries, pretended to eat blueberries, and picked blueberries again over and over.
Incidentally, it did NOT escape my notice that this would have been meet with far less enthusiasm if it were picking up and putting away blocks/legos/other toys. :-) Maybe next clean-up time I should tell them that they are toy hunters . . .
After a few rounds of berry picking, I brought the toy kitchen over to where Noah was sitting. (It's usual location is a bit crowded for his I.V. pole.) We'd discussed the illustration in the front and back of the book which shows Little Sal and her mother canning the blueberries, and Noah and Mary Faith were thrilled when I brought out real canning jars and other canning equipment so THEY could can berries for winter!!
Notice the mortar and pestle action going on in Noah's jar. He decided to branch out and make blueberry juice. After a while they started thinking of what they could make with their jars of berries, so we had pretend blueberry cake, blueberry bread, and blueberry popsicles . . . and now I can hardly wait for our real blueberries to ripen so I can make some of those things too!
Noah and Mary Faith are currently memorizing Matthew 5:9 "Blessed are the peacemakers, for they shall be called sons of God." They got lots of opportunities to practice being peacemakers this morning. We had to work hard on less "Hey - I want that jar!" and more "Here, would you like to have a turn?"; less "You got more berries than me!" and more "Good job picking berries!"; less "MY TURN!!" and more somewhat patiently waiting for a chance.
Had to include a Jake shot. He didn't quite make up for the fact that I didn't arrange for real live bears in the living room, but he was cute keeping an eye on his boy. By the way, did you notice our retro toy kitchen? It was a gift to Hannah when she was about two years old and has been a favorite toy for child after child for almost 19 years! It still looks nearly new and I love the fact that the children don't think it needs to have beeps and lights for it to be fun.
Noah is getting his supra-pubic catheter changed on Tuesday - as always, we appreciate your prayers!
Blessings,
Kate
