Goodness! We’ve now been home almost 36 hours. It feels like days and it feels like 5 minutes. I think “settled in” would be a massive overstatement, but let’s just say that we’re in. It is not unlike actually moving into our home for the first time, since we’ve been gone for 7 months and we’re coming back with a new normal. Unpacking has been exhausting but we made a little list and broke down the tasks into manageable pieces that can be done one day at a time. We will be back at Ronald McDonald House for a few days next week, because Leah has 7 appointments over the course of 4 days, so I’ll continue to do a little bit of unpacking every day while Mandy’s at work so that when we come home from RMH next time we’re actually coming home to home and not to a mess of boxes and suitcases. It is pretty chaotic.
Leah seems to be adjusting well. She’s a tiny bit sneezy and snorty, especially at night. I’m guessing this is because the house was just cleaned and vacuumed not long ago and there’s probably still dust in the air – and of course there are the cats to consider. Then again, sneezing can also be a symptom of withdrawal, and her dose of methadone just took a huge dive. Keeping fingers crossed that she is not straight-up allergic to the cats. We haven’t seen any red or watery eyes or runny nose so far, and no skin reactions. She has been around cat-owners all summer and hasn’t seemed to have any reaction to their clothing when she was held, so hopefully that bodes well for the kitties. She doesn’t seem to be in any distress in terms of breathing, so we’ll keep an eye on her and if she continues to be sneezy and a little sniffly, we may have to invest in an air purifier to suck up some of the dust and pet dander.
What else has been going on… Today Leah had her first doctor’s appointment since she got home. It didn’t take very long, did it? We just couldn’t stay away, I guess. I’ve been in touch with her doctor and medical equipment company all weekend. Hopefully things will calm down once we get past this transition – the move home and the weaning from methadone. Then again, after that we move into the next transition of eating by mouth. Today’s appointment was for occupational therapy. The OT attempted to give Leah a tiny bit of breast milk by bottle. It was too much for her and she got confused and upset. She wants so badly to nurse and suck, but she lacks the coordination to do it properly. She does a lot of smacking lips together and “nomming” but doesn’t get in many proper sucks. They count them. I think she did maybe three or four in a row today. We want to make sure we start feeding her by mouth while she still wants things in her mouth; I’ve had multiple parents tell me their kids developed horrible oral aversions, making oral feeds far more difficult, if not impossible.
I’m happy to report that we have not yet had a g-tube outage since we got home. I don’t know if it’s because we haven’t been “strolling” her around as much or if it’s because we taped the extension to her belly with paper tape. It’s also only been 36 hours. But we’ll take it!!!
Not too much else going on right now – unpacking, playing with baby, calming baby, soothing baby, trying desperately to get baby to stop crying… I can’t wait until she’s off these meds!!!!!
Oh – one more transition coming up: we’re going to take a stab at cloth diapering. Wish us luck!!!
We got Leah’s care package from Angel Love Boxes today. ALB is a non-profit organization that sends care packages to kids with chronic illnesses and disabilities. There are still some g-tube covers on the way as well as a tummy belt, which we are really looking forward to because we are hoping it will help keep Leah’s g-tube extension under control. The other thing that we are really looking forward to is that we will be receiving a donated Res-Q wedge some time this week. This is an orthopedic device meant to keep infants elevated at an angle to prevent reflux, and is especially critical in Leah’s case because if she spits up, she doesn’t really know what to do to swallow what remains in her mouth. The Res-Q wedge is better than the store-bought wedges because it’s at a higher angle, comes with a sling to keep the baby in place, and is designed to fit evenly in a standard crib to avoid smothering accidents. It is considered a medical device and we have a prescription for it from Leah’s doctors, but the insurance won’t cover it and it’s a few hundred dollars. Angel Love Boxes contacted the manufacturer and they agreed (under a few reasonable conditions, like collaborating with their OT to make sure we use it correctly for Leah’s diagnosis) to donate the wedge to us along with the current and next size sling (since she’s right on the threshold for the sizes but you have to use the proper size at any given time). We are grateful for the Res-Q Wedge makers’ generosity and kindness, and also *so* appreciative to Angel Love Boxes for working so hard to make sure Leah got the wedge she needs.
Did you notice the hamsa in the previous picture? Good eye! Being a Christian charity, Angel Love Boxes usually includes a handcrafted wooden cross in each care package; these are made by the org founder’s dad. We are a Jewish family, and while the crosses are beautiful and you can tell that a lot of love goes into making them, it seemed like they should go to families where they would be appreciated fully! So I wrote to the founder and said just that, but noted that we would love to have a hamsa that was made by her dad if he was willing. She asked for an example that she could show him and I sent a Google Image search, and the next thing I knew, she’d emailed me a design from her dad and also posted on the ALB Facebook page about the meaning of hamsas! So cool. This is the result of that whole exchange. It’s lovely and so special, and we can’t wait to find a permanent place to hang it!
For those of you who wanted to know how the cat-cat-baby meeting went… here you go. Pretty uneventful, but that’s what we want!
And now, on to the rest of the photos!
A church group sponsored a “Meal of Love” at Ronald McDonald House, and one of the ladies went around to the different tables and took a Polaroid (!!!!!!) photo of each family that wanted one. (The new ones, not the old-school kind). I love this because all of us are smiling. Well. Almost all of us.
Aunti Staci babysat for BabyBug at RMH on Saturday night so we could attend Mandy’s choir’s holiday concert just up the street. We received a string of adorable photographs all night. If only Leah’s oxygen supply company hadn’t totally misunderstood us when we told them when to pick up her large tank, the whole night would have been flawless. Not sure how “not between 8PM-11PM” became “only between 8PM-11PM,” but what can you do?