Adventures with Ellie: Lucky #14?

After our whirlwind of a weekend, we’re settling back into our “normal”, bracing for the cold and flu season that is already upon us, but reveling in the amazing progress we’re seeing in each of our kiddos so far this school year.

Lance is now in first grade and while he has his bad days, his good days far outweigh the bad this year. This is a welcome change from kindergarten. We’ve found that if he can be a helper, his behavior is more in check. On days when he gets to help another kid with math, he’s beaming after school. At home, when he teaches Kaleb about the parts of a flower, or about planets, he’s calm and seems proud of the “purpose” he’s been given (plus, the nerdy science girl in me is stoked when they talk about photosynthesis and cloud formations). While it’s sometimes hard to stay patient on bad days, and sometimes hard to empower him to find that purpose every day, I feel like we’re starting to see the kind of kid he WILL be… the kind of adult that might emerge from this spirited little boy. I see someone who is a helper. Someone with compassion and vast intelligence, but also someone with a fiery temper and impulsiveness that needs bridled. Let’s see where that takes us and how we can build on that. He just wrapped up his season of Runner’s Club and wants to take on basketball camp next. Brandon and I are not the basketball type, but if that’s what he wants to try, by all means, kid… do it.

Mook with his Captain Underpants pumpkin

Finishing up one of his races... nice stride, kid!

Kaleb is well into his first year of daycare and pre-K at Shelby Hills. Honestly, I thought that their daycare would be more of a babysitter before preschool. Oh, how wrong I was! The first week, he came home and told me all about China and about how he tried ginger tea and ate sushi with chopsticks. Then they were off to Egypt and learning about pharaohs what a sarcophagus was. WHOA! He came home dressed for a mariachi band when they studied Mexico, told me all about the boat taxis in Venice on Italy week and brought home his own leaning tower of Pisa. Then told me all about the deserts of Africa last week. He’s a tiny world traveler and he loves to learn about other countries/continents. This is all happening before he even starts his day at preschool. I could not be more impressed. Kaleb is going to try out for wrestling this week. Brandon is thrilled. I think this is a better fit for Kaleb than for Lance (Lance might get a little too rowdy). I’m just hoping Kaleb doesn’t cry… he has already said he is going to tickle them… eeeek, this might be a wreck. Kaleb has a more athletic build, so I wonder what his strengths will be. He’s a gentle soul and is always updating me on who is friends are and how he “feels” each day. Oh, how different these two boys are.

An African tribal mask

In Italy, you eat pasta. Isn't this the cutest craft you've ever seen?

Kaleb made his pumpkin into Leonardo

My mariachi musician on the way home from school

And Ellie, crazy Ellie… she’s busy being destructive most days. She seems to be getting bigger each day – seriously! She’s a busy body and cannot be left unattended for any amount of time without coloring on the walls, climbing into the dishwasher (or stopping it mid-cycle), emptying out the bathroom cabinet, or decorating the living room with baby wipes. She also finds random things to throw into the garbage and then “prizes” in the garbage she thinks need to be distributed throughout the house. I’m not getting any new volunteers for babysitting with this talk, am I? Ha! She is learning more and more words each week and has loads of personality to spare. When she’s around people, she waves and says, “Hi” to everyone. If they don’t pay attention or don’t wave back, she leans in and waves harder. She will NOT be ignored. You go, Bugsy! After a super cute 4-wheeling play time she had with her friend, Grant, I asked Mary (Grant’s mom) if it was totally unacceptable to arrange a marriage for them. Ha! In all seriousness, Grant and Ellie have taught their mommies so much and we look forward to many years of them playing together. There are many other families that are in the thick of this with kiddos close to their ages, too… we seriously need to get play groups started. All in good time, I’m sure.

If you didn’t already see Brandon’s post on this last week, we’ll need your prayers on Wednesday morning as we head to Columbus to speak in front of the Ohio House of Representatives on H.B. 332. I had trouble reading the letter I wrote to Brandon, so I’m not sure how I’m going to keep it together in front of strangers. Yes, I’m emotional… I’m well aware of this. Anyhow – if you wanted a peek at the letter I’ll be reading to them, I have it attached below.

If that’s not enough excitement for us this week, Ellie will be heading back to the OR on Friday for surgery #14. She’s having her lingual tonsil removed (until a few months ago I had no idea what a lingual tonsil was) and possibly part of the base of her tongue. Gross, I know. But they need to assess how much has to come out to allow her to breath during sleep. Right now, her airway is much better than in was six months ago. Removing her tonsils and adenoids made a big difference, but when she’s sleeping, her tongue still falls back and occludes her airway. Let’s see what this next surgery reveals. Are we on our way to finally having a Bandaids for Bugsy celebration? I hope so. We won’t know until she heals from surgery – it’ll be another two months or so before we can think about that.

So on Wednesday, please pray that the Ohio House hears our story and votes for this anti-discrimination bill. Organ transplant waitlists shouldn’t be denying people based on disabilities. And on Friday, send more love and prayers our way as we again head into the OR. And one more very important request: we got a letter last week saying that Ellie’s pulmonologist passed away suddenly. We’re heartbroken. He was a wonderful man with a passion for helping children. He actually had a trach himself when he was ill as a child and his experiences lead him to his profession. He was a gentle, kind man who was calm and encouraging even in the midst of the craziest appointments. Dr. Cohn’s family and co-workers have been heavy on my heart – can you join me in prayers for them as well? I know that Team Ellie Bug specializes in prayer… I know our prayers are heard. I know they’re powerful. THANK YOU!

And of course, thank you to all of you who came out to support us at Walk Your Socks Off on Saturday. We had a beautiful day and a great turn out. We’re thankful for the opportunity to network with those in our community and to advance opportunities in our area for children and adults with Down syndrome. We couldn’t do it without your support. You’ll get a nice break from my constant posts promoting this event. Come spring, we’re planning a craft beer & food truck rally in conjunction with a cornhole tournament. Get excited about that, y’all!!

Until next time… much love from the Ward household. Thank you for following along. Please oblige our prayer requests above, and for the love of Pete, go out and spread some kindness today! Have a wonderful week.

See photos below and my letter to the House.