Adventures with Ellie: 8 months old already

I cannot believe that our sweet Bug is already eight months old. She is getting bigger by the day. She is now laughing – although you can’t hear it. Her sneezes are the funniest thing... she makes all the facial expressions of a sneeze, but the sound comes out of the exhale port... which is about belly-button level on her... so weird. She is able to roll over and push her torso up a bit on the floor. She is able to sit with very little assistance and is thriving with the constant interaction she has at home. She’s been to church with us a few times, she’s been out to eat a few times (where she's eaten mashed potatoes, guacamole, and queso blanco)… and she’s even gone on a grocery shopping trip once. She’s been to several family gatherings and she’s already enjoying the summer campfire season. We’ve taken many strolls through the park and one very bumpy stroll through the woods.

Ready for spring/summer in one of her MANY dresses

She is eating more by mouth now and she gets super excited about her playtime with her brothers. She might be complicated, but I’ve never met a more pleasant little person in my life. I wouldn’t say that she’s happy all the time (I know this is often said about kiddos with Down syndrome), but I would certainly say that when she’s happy, she’s happy with every ounce of her being. She shows you she’s happy with her whole face… not just her mouth. Her eyes light up and those big cheeks smash up, squinting her eyes until they’re almost shut. Her eyebrows raise and her arms and legs kick frantically while she wriggles around, full of joy. She lets out these adorable little squeals (which I’m completely incapable of capturing on camera for you). She is just a joy… plain and simple. I do daily trach care on her – trach care is the farthest thing from fun for Ellie. It takes about ten minutes and she’s usually crying the entire time. As soon as I’m done, I scoop her up and cuddle her into me. She snuggles in as I dry the tears that ran down her face and into her thickening hair. I always feel awful. She wriggles into my shoulder, then rolls her head to the side, raises those eyebrows, and gives me a giant smile. See… a joy. And forgiving to boot!

We had a pulmonology appointment in April where they were very happy with how Ellie is doing. They beefed up her formula some because she wasn’t gaining any weight and we talked in length about expectations for how long she’d be trach dependent and ventilator dependent. Dr. Benscoter (the pulmonologist) said that “typical” kids who are trached and vented for the same reasons that Ellie is tend to wean off the ventilator around 2 years of age… then they have their trach in for about another year. Kids with Down syndrome tend to be on a little slower time table, but the outlook was still that she’d likely not have a ventilator or trach when she’s old enough for kindergarten. So, that’s good. I kind of hope that she’s more on par with a “typical” kid, but I won’t hold my breath too much, there.

We’ve had three cardiology appointments since we’ve been home (about every other week right now), and we talked with our cardiologists this morning, too. Still waiting on word from Boston. They finally received the last of the paperwork from Cincinnati in yesterday’s mail and they will have a decision for us by next Monday. I will certainly update you all on that. I am hoping and praying that they will be able to do a 2-ventricle repair on Ellie.

Once we get the word, we’ll likely be in a mad rush to secure travel plans and such… which might be a little chaotic. This is another instance where all of the funds raised for Team Ellie Bug will be put to great use – we are eternally grateful for all of the love, funds and prayers sent our way. You all are just too kind! The Ronald McDonald House of Boston only houses families of kiddos with cancer or who are undergoing a bone marrow transplant. So we’ll need a hotel if we head that way. We’ve also heard that it’s kind of a nightmare flying with a kiddo on a ventilator… so we’ll probably make the 14-hour drive instead of flying. At least we’ll then have a vehicle in town, right? This is all hanging on the answer we get next week… but I’m trying to mentally prepare myself.

Last week, Ellie was pretty under the weather. She was puffy (yes, more puffy than she normally looks) and just wasn’t feeling like her happy little self. She required supplemental oxygen for several days… no big deal, though. I don’t know if I mentioned before that while she’s on a ventilator, she does handle room air just fine. Room air is about 21% oxygen, and she does great on that. The ventilator gives her a certain amount of pressure with her breaths to help rid her body of CO2. When she’s sick, she usually requires a little extra oxygen fed into her line, though. This is where I am so grateful for the ventilator and G tube. When she’s getting sick a lot, I can’t imagine how hard it’d be to get her meds down if we didn’t push them through her tubie. When she’s not feeling well, it’s amazing what a few days on a small, supplemental oxygen dose does for her. She’s pretty resilient, really… much more resilient than I thought she’d be.

I’m still working on getting myself organized and working through getting our house more organized. You’d be amazed at how I was able to stash 12 big boxes of supplies neatly into drawers and bins and shoe organizers in our house. Our closets, Ellie’s room and the laundry room had to get overhauled and my van is next up to bat. I finally have a real work space again (and it sure feels good to be really productive). I have to admit that it’s kind of refreshing when everything has a place. I’m far from perfect in this realm… but I’m inching my way there. Shut it all you organizational gurus who are baffled at my chaos. Kidding!

We have a daytime primary nurse, Rae, that we absolutely love. Last night was the first night that we had our overnight nurse, Danelle, that we’ve been trying to secure since January. She seems really sweet, too. Can I tell you how amazing it was to sleep in my bed and not get up to alarms through the night? I have kind of been splitting my time between bed and couch these past 6 weeks… and have not had an uninterrupted night of sleep until last night. That’s since Ellie was born, really. She wasn’t sleeping through the night when we went into Cincinnati… there was no solid night sleeping in the hospital… and since we’ve been home, we’d only had 2 or 3 nights covered, I think… and I still got up to alarms as I hear them. I know, I know… some of you have kiddos that don’t sleep through the night yet. I feel ya. I’m not saying it’s been impossible… clearly, we’ve still functioned… just with lots of coffee! I have to brag that it was really nice to sleep through the night last night, though… I do!

So that’s that. I know I’ve been terrible at updating the blog lately, but please know that no news is usually good news on the Ellie front. I WILL post an update when we get word from Boston – no matter what news we get. And I WILL bombard you with pictures now. Enjoy!

Thank you so much for all of your love and support. We are so happy to have spent the last six weeks at home with our Bug without having to get readmitted for any reason. We’ve had plenty of appointments… and we’ve had two small bouts of sickness… but she’s quite the rock star and we know that the prayers and good vibes you’ve sent for our girl are working. Thank you!