Whew! We are nearly halfway through BabyBug’s Big Week O’ Docs. Including her two in-home assessments by Regional Center, she has 9 appointments this week – plus one emergency appointment yesterday.

Hm. What has been going on these past few days? Well, Sunday morning, we woke up to the sound of Uncle Ralph on the phone with the electric company. Something about a power outage. What?? Noooooo! It turns out our whole neighborhood was out of power. Sigh. We had no choice but to wait it out, so we went about our day. Cool Auntie Erin came over and we went to the craft store for her 16th birthday present, supplies to make jewelry to wear on stage at her band performances. After the store we came back to the house, and Erin made some earrings, a necklace that says, “ROCK ON, SISTER,” and a bracelet. ‘Cause she’s cool like that. Later, we went to a party hosted by Mandy’s choir director. Every year, he hosts a holiday party just for the women in the choir – they jokingly call it the lesbian party and he gives out party favors like little tool kits and battery-powered screwdrivers. This year he had some little drawings and I won a step-ladder. Yay! No, seriously, YAY. Ours is too short. Or really, we’re too short and therefore it doesn’t raise us up high enough to change lightbulbs.

While dressing for the party, I put on a flannel shirt that I’ve been wearing as a sweater lately as a sort of throwback to my junior high years (and also because it’s super-comfy). Mandy saw it and joked that she should wear one too since it would be totally fitting for the occasion. Cut to 20 minutes later and we’re all ready to go – me in my flannel, Mandy in hers, and Leah in a striped button-down shirt and khaki overalls. It was the cutest, most ridiculous thing ever and I only wish we’d had power so we could have taken a better picture to show you. As it is, we barely found our way to the door (THANK YOU, iPHONE FLASHLIGHT!), and the lighting at the party was fairly dim. So we have what we have. Just know that it was ridiculous. Everybody was so excited to meet BabyBug, and she did pretty well and didn’t really get overwhelmed like she did at Thanksgiving, although eventually I took her into another room so she could sleep.

When we got back to the house, there was still no power. We had fun (or not) stumbling around the house using battery-powered tea-lights to light our way. It was a challenging experience – Leah has more than one electricity-powered medical device as well as refrigerated meds and breast milk, and we had to take a ride to Gran’s house to do her breathing treatment. We did learn earlier in the day that we need to be on file with the power company as a family with a child requiring electricity for medical devices. Not only do they provide a small discount, but more importantly, if there is a planned power outage they are required to notify us ahead of time so that we can make sure we have a backup plan for Leah’s treatment. This is critical since both her feeds and her breathing treatment require power. It is sort of troubling to learn that being on record with them doesn’t prevent them from turning off the power – it just requires notice for planned outages. What do families do when a household member is on a home ventilator and the power goes out??

In case you were wondering, our power returned after about 32 hours. A few hours into it, Uncle Ralph took our breast milk supply to Mandy’s aunt’s house for safekeeping. He also bought two large bags of ice to put in the refrigerator (like an ice box!) and that allowed us to save the cold foods as well. Yay. We pulled through the power outage without any major catastrophes, but it was a good reminder that we need to be better prepared for a real disaster. Anyone know anything about affordable backup generators? If there was a real emergency we wouldn’t be able to just drive somewhere to plug in the pump and breathing treatment – and ice would be a hot commodity (a cold commodity, really). What would we do? Leah needs to eat, and she needs to breathe, and she needs her medication.

Yesterday Leah had her first outpatient speech therapy visit. She tried a bit to drink water through a slow-flow nipple, but she continues to lack coordination and needs to work on that tongue thrust! We got about maybe 1/3 of the way through the appointment when we started hearing this little gurgling creaking sound, and upon investigation we realized her g-tube was out of place. That makes five times since her release from the hospital. This time, however, was different – all of the other times, the balloon came out intact, suggesting either that the balloon was inadequately filled or that the tubing caught on something and pulled it out. This time, the balloon failed and caused the tube to come out. We’re not sure what happened – probably a faulty balloon. I tried to put it back in, but it gave me more resistance than I was willing to fight against so I called the nurse practitioner on the surgical team and she said to bring her over and she’d re-place it. It turns out Leah’s tract is at a bit of an angle, which I didn’t realize since I’ve not been the one to deal with her escaped tube the past few times. Now I know! The speech therapist was very sweet and walked over to the other building with me so I could carry the baby since I didn’t want to strap her into the stroller with a dislodged g-tube.

So. Two appointments yesterday. Today Leah met with her surgeon and her new gastroenterologist, and it looks like we will be returning to consolidated feeds (over an hour), at least during the day. Her feed was raised as well – she has lost a little bit of weight since her last weigh-in. She’s 11 lbs, 4 oz. Gain gain gain, little one!

Tomorrow we have baby’s RSV shot and flu booster. On Thursday Leah has a whopping THREE specialist appointments. Friday are her Regional Center assessments. This kid is POPULAR!

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We don’t always dress like lumberjacks, but when we do, we make sure the kid matches.

“Yeah, I’m cool.”


Mama and BabyBug! We just need baseball caps!

Beautiful eyelashes.

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“Mommy, please just let me eat your hand. That’s all I want. You have another one. Just let this one be mine.”

BabyBug with her Tubie Friend.

Leah with her best friends at the moment. (Don’t worry – Jingle Bug is just outside the frame.)

Who’s a cool cat?

Please never let her make this face when she’s asking for a cookie or a pony. I’m not sure I can stand up to this face.

“WHEW! It’s hot in this monkey suit!”

Sleeping in the car.

7 thoughts on “BusyBug

  1. Great to see her doing well!

    I think (don’t quote me on this) when you let the electric company know that you have life-saving equipment, not only do you get a discount, but, if there’s an unexpected outage, they’ll put your area on a higher priority on getting service restored. And, heaven forbid, if you have financial difficulty and miss bill payments, they won’t cut off your service as quick as others. Double-check with Edison on that.

    Also, I used to be on the county’s list for disabled when it comes to disasters. The list’s acronym is SNAP. Check to see if it applies to Leah, too.

    • Carlos, we will definitely be checking into getting Leah into the electric company’s system. As for the disaster list, it looks like the SNAP list is primarily to let the county know if you have a disability that would keep you from evacuating to safety or finding shelter for yourself in the first 72 hours after an emergency. Later on, this might become relevant, e.g. when Leah is an adult living independently – but for now I would rather those limited resources go to folks in greater need. I know there are many people with disabilities and elderly people who would be stranded on upper floors in buildings with no working elevators if there was a major disaster. Leah’s need in a disaster would be more about electricity for her equipment and meds (and also a moderate level of temperature control as she is not great at self-regulating body temperature). What I’d really like to do is invest in a small backup generator so that if we had an emergency we could at least be somewhat self-reliant and not have to take her to an ER unless it was medically necessary for other reasons. It would just mean more exposure to contagious illnesses and chaos, and surely in an earthquake or something similar there would be tons of more dire medical emergencies that couldn’t be resolved with a simple power outlet. :-/

  2. try looking for a gasoline generator, and then only use it for hooking up a small (dorm sized fridge, and your medical equipment.) And of course, only use generator outside the house…. 🙂 check home depot, local hardware stores, and ASK for a discount. Home Depot does quite a bit of discounts\donations for people with special needs – try writing to the corporation on line. Couldn’t hurt. Might help.

  3. A generator is a good investment. We lived in the middle of Cambridge in an apartment with no good place to keep a generator, so we needed another plan. Have you talked to the local fire station? I assume you have because you have O2 at home, but if not, you might want to visit so that they know that you have a baby with equipment, what that equipment is and what they should do if they ever have to retrieve Leah in an emergency. Our station offered to come get us so we could use their generators if we ever lost power for very long. Take Leah when you visit. Firefighters love babies.

  4. I am so happy all three of you are adapting to life out of the hospital. It is a constant day of overseeing Leah’s daily regimen ….you make it sound effortless. Your friends are so supportive and of course Uncle Ralph being home with you all makes me feel better. Good on you all…as the Aussies say!!

  5. Looks like you guys have plenty of friends and relatives so if your power goes out, hopefully the power is not out for everyone you know…..just in case you need a place to stay for a day or 2. When hurricane Ike came to Houston about 5 years ago we had to stay with my in laws for 10 days! (Not fun.) But generally, power is never off for more than a day, right? Another idea is calling a hotel and asking for a special rate but keep in mind their generators may not be enough for what you will need.

    You, Mandy and the baby look adorable! Hope Leah never asks me for a pony with ANY of her faces cos I don’t think I’d be able to say no. (Even though it would require a bank loan!)

    Have a great xmas at Mandy’s parents house! (I LOVE Christmas….you should see my house…lots of Hanukkah decorations too.)


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