Eloise is 18 months old!

Happy half birthday, Eloise!

Eloise is officially eighteen months old as of February 1st (I’m a few days late here), and gosh she radiates everything “toddler”. She’s 30.5 inches tall (17th percentile), 24lbs (47th percentile), and 90th percentile for head circumference (that’s allll Peter). Eloise loves her “Pupper” and she doesn’t go anywhere without it, as well as a Wubbanub; we’re trying to wean her off of the pacifier, but it’s also a battle I’m not really wanting to fight, sooo… yeah. It’ll happen eventually! She adores her brother and wants to do everything that he does, and Walter absolutely lets her do whatever he does- she really hit the big brother jackpot. Eloise can say “mama”, “dada”, “dahhhh-dahhhh” for dog, and “baba” for baby. We just got a speech evaluation prescription and our fingers are crossed that she’ll be approved for some therapy sessions to improve her vocabulary. Eloise still attends her PPEC (medical day care) and she absolutely loves it. She’s now in a toddler class and is learning letters, numbers, and most importantly getting social with other little ones her age. With Eloise’s constant doctor appointments, our schedule can be really hectic and making play date plans can be difficult, not only because of timing but also because we’ve been treated differently in the past and it’s left me a little defeated. Eloise’s PPEC has been an absolute blessing for all of us.

Eloise’s condition hasn’t improved in the last six months like we had hoped for, but she isn’t getting worse so that is something to celebrate! Back in December Eloise had a sleep study to get an update on her central apnea and bradycardia conditions, and we received the sleep study report in January. Eloise’s apnea score is still at a 6, meaning she has on average six apneas per hour while sleeping, lasting around 17-22 seconds each. Her bradycardia episodes dipped as low as 48 beats per minute (a major improvement from 22bpm!), and her blood oxygen saturation went to 82%, but averaged between 90%-94%. Her wake after sleep onset (WASO) score was a 16.1, which is fairly high for a toddler, meaning that her mind was awake and wasn’t in REM sleep.

The apnea/bradycardia monitor (aka Susan) is still with us, so is the pulse oximeter, as well as our oxygen concentrator. Eloise still has her leads on her body and wears them 24/7 even when she’s not attached to the monitors because it’s so much easier to keep her belt on and let her think that it’s just an extension of her body; when I do take off her belt and put it back on later, she rips the leads and sometimes breaks them (hello toddler antics). While it’s becoming increasingly harder to put a nasal cannula on Eloise, we still use the oxygen when her oxygen saturation levels dip below 92%. The monitors will continue to be with us for the foreseeable future, and honestly I’m okay with that. These monitors have given me a sense of security overnight and even though they alarm on occasion at night, I’m able to get some sleep and don’t need an IV of caffeine every morning.

While I mentioned above that Eloise’s conditions haven’t become worse, the number of bradycardia episodes have increased in the past several months and we will be traveling to Houston to meet with a cardiologist at Texas Children’s Hospital to try to get some answers as to why these bradys seem to be happening more frequently. Our pulmonologist is getting concerned, and the cardiology office that we were referred to in Orlando believed this was simply a pulmonology issue… so we hit a dead end. Here’s the thing, I’m really tired of hearing that this is a “wait-and-see” condition and not having any answers. It’s frustrating, and I’m tired of seeing my daughter go through these brady episodes and wonder if she’ll recover on her own… or if I need to intervene and do chest rubs to stimulate her.

Eloise is a firecracker, and her apnea and bradycardia episodes are just part of the Ouisie package that we love so much. She’s a sweet girl who loves to please, and I couldn’t ask for anything more. She’s the best hug-giver, hand-holder, and the best little shadow to her big brother. We are so blessed to call Eloise ours, and we can’t wait to see what the next six months have in store for us. Before we know it, she’ll be TWO. What?!

Happy half birthday, Eloise! Goodness, we love you so much.