Two years ago today, our sweet LeahBug was born, two months early, via crash c-section on account of the toes she tried to dip into the world before jumping out. She was a miracle then and she is a miracle now – the strongest person I know, and the happiest and most genuine. This child amazes us every day and I look forward to every lesson she teaches us. Happy birthday, Leah!
Hey, so guess who is turning TWO YEARS OLD on Friday?
What? How did that happen??
Yep. Ms. Bug will be two years old in just a few days. I can’t believe it – the hospital days feel like they were ages ago but somehow also feel like they were just yesterday. Not sure how that makes sense, but it is what it is!
So, where did we leave off? Leah LOVES school but has also been out sick for a week. She still has the cough from the respiratory infection she had in March, and it is sounding worse and worse. Poor kid! She will be getting tubes placed in her ears in June; she has fluid in both ears. We hope this will improve her progress in language development as she should be able to hear better. We hope.
Leah is learning all sorts of new things, and is starting to develop preferences. For example, when she bangs blocks together she wants them to be the same color (in the next few days I will post a video demonstrating this), and she has a favorite book (“The Very Hungry Caterpillar”), which she can listen to as many consecutive times as we can tolerate reading it, plus one. And, AND, she has SIX teeth! Two front teeth and four molars! The front teeth came in last, because Leah operates on her own timetable. And let me just tell you – if you thought Leah couldn’t get any cuter, you didn’t envision her with teeth.
Friends! We have six days left to reach our team goal of $1,800 for the Ronald McDonald House 5K Walk For Kids. We were staying at RMH for Leah’s first diaphragmatic hernia surgery the weekend of last year’s walk, so we are super-excited to be able to participate this year. Can you please help us reach our fundraising goal? Donate here! Thank you!!
And now, the photo you’ve been waiting for: Leah’s first day of school! She had a few moments of tired fussiness, but for the most part she had lots of fun!
I was really concerned that Leah would wind up like me, not getting her license until she turned 30, so we applied for a youth driver’s license and she got hers today! She can officially drive herself to and from school and doctor appointments.
Happy April Fool’s Day! The real momentous occasion is that Leah starts school tomorrow. We will post pictures!
We are FINALLY getting a chance to participate in the LA Ronald McDonald House’s Walk For Kids. We really wanted to participate last year, but Leah was scheduled for her first diaphragmatic hernia repair, and we wound up AT the Ronald McDonald House instead of walking FOR it. This year, we’re doing it!
How can you help, you ask?
1) Donate! Each of us is hoping to raise $1,800. Lofty goals, I know, but it’s a worthy cause! You can donate toward Mama Lisa’s goal, toward Mommy Mandy’s goal, or toward Leah’s goal! Donations should be tax-deductible.
2) Join Team LeahBug! You can join in person by participating in the walk on April 12, or become a virtual team member if you’re not local. There is no registration fee, so come join Team LeahBug and set your own fundraising goal! Join here!
3) Share, share, share! The link to Team LeahBug’s fundraising page is http://rmhcsc.convio.net/site/TR/WalkforKids/LosAngelesRonaldMcDonaldHouse?team_id=3259&pg=team&fr_id=1095#.VPzIvPnF9yW, but we’ve registered and redirected teamleahbug.com to make it easier for everyone to remember and share.
We are excited for the chance to give back to the Ronald McDonald House, which was our home away from home for 7 months. Thank you for joining us in reaching our goals!
p.s. For those of you on the edge of your seats: We have no lab results yet for Leah’s allergy tests. The doc said a scratch test would be useless because her sensitive skin reacts just to the irritation of a scratch, regardless of the allergen.
Tomorrow is the day for Leah’s allergy testing! We come face to face with her edible Kryptonite! My prediction is that while allergy to eggies will almost certainly turn out positive, pineapple may well come out negative. I suspect more and more that her big breakout last year was actually a response to the MMR shot, which she had ten days prior. I hope that means her body has built up the antibodies she needs to fight off the measles, as apparently IT’S A THING AGAIN. But yes – hopefully they will test for all of the usual suspects, and we will see what we need to avoid as Leah’s meal “repertoire” expands.
While we await more news, please enjoy this video. It makes me so happy.
It’s been a warm, weird winter so far. January was pretty uneventful, but we did have to take a late-night trip to the emergency room after we discovered that Leah’s g-tube was out and her stoma completely closed. It was a pretty miserable trip, but somehow we managed to land there on a night when Leah’s surgeon was in the OR at 1AM, so he came to check on us after his procedure and was able to get the stoma open again using some small torture devices called dilators. We are very grateful; the ER doctor was unable to get the stoma open himself, so had her surgeon not been there, Leah could have been looking at a new g-tube placement surgery.
January also saw the loss of one of our Ronald McDonald House family members. I don’t know if I have talked about this family on the blog, but I know I have shared their story on Facebook. When we arrived at RMH in 2013, there was a family there from Guam who had a son in the hospital for a pre-leukemia blood disorder. His older sister was a perfect match for him and was going to be his bone-marrow donor, but about mid-way through the summer, I was in the laundry room talking with his dad when the younger sister came in and said the older sister was being taken to the hospital by ambulance for an incessant nosebleed. She was diagnosed with the same condition, and her brother passed away shortly thereafter. Unfortunately, big sister passed away on New Year’s Day. She fought long and hard and had a successful bone marrow transplant, but she had an allergic reaction to shellfish, and that triggered graft-vs-host disease, which ultimately took her life. We are so sad for this family’s tremendous loss.
February has also brought terrible loss. When Leah was about five months old, I posted a blog entry about the odds of being Leah. We received a comment on that post from the mama of another little girl born just a few months after Leah with Down Syndrome, long-gap esophageal atresia and holes in her heart. Through Facebook, we got to know Audrey, the little sweetheart who shared so much with Leah. We became friends with Audrey’s mom, who soon started calling the girls soul sisters. I wish I could tell you that these girls will grow up together as pen pals and FaceTime buddies. Unfortunately, Audrey was hospitalized with a cold this winter and her condition took a downward spiral as she experienced multiple respiratory complications as a result of her EA/TEF. She was placed on ECMO for several weeks, but her struggle ended last Wednesday, February 18. Her memorial service was live-streamed this morning, and although it was absolutely heartbreaking, we were glad for the opportunity to support her parents and brothers in celebrating her life.
As requested, we have given Leah extra hugs and kisses and squeezes from all of our friends and family members who have also grown to love Audrey and who are also grieving her loss.
Leah is beginning to make more progress in the area of oral feeds. At present she is getting roughly 20-40% of her daily caloric intake by mouth. Feeding is a long and arduous process; it takes a good hour, at least, to get 70-100 calories in her. We got adventurous on Saturday morning and gave Leah half a scrambled egg – resulting in Ms. Bug’s very first ambulance visit. It appears our bug is allergic to eggs. She really enjoyed the scrambled eggs, which makes it even more of a bummer that she can’t have them – it’s hard to find high-calorie foods that are reasonably healthy and soft enough for Leah to swallow. Aunti Staci came over just as Leah was finishing up with breakfast, and within a few minutes, Staci pointed out that Leah had a bunch of hives on the back of her neck. It almost looked like she had been attacked by a mob of angry mosquitoes. She had them all over her back and her abdomen. She didn’t appear to be in distress, so I tried calling the advice nurse, but they told me it would be a 2 hour wait for someone to call me back. I then tried calling the pharmacy to find out what the proper dosage would be for Benadryl, but they put me on hold and after 15 minutes I gave up and looked it up online. We gave the Benadryl and then I called the advice nurse back and insisted that someone talk to me RIGHT NOW – Leah’s O2 saturation was fine and she seemed to be breathing well enough, but she was looking pale and her lips were starting to get a blue tinge around them. That seemed to improve with the Benadryl, and the nurse was just about to tell me to keep Leah on observation when Leah started trying to throw up. The nurse told us to just bring her in to the ER. Unfortunately the ER is quite a drive from our house and we didn’t want to risk getting stuck on the freeway with a child having what could develop into a dangerous allergic reaction – apparently the reaction can evolve from hives to anaphylactic shock. So we dialed 911, and Leah experienced her first ambulance ride, siren and all. At the hospital they gave her more Benadryl as well as a steroid, and sent us home after a few hours of observation (and another, less severe breakout). Today, one of her doctors gave us a prescription for an Epi-Pen. Hopefully we don’t have to use it.
So that’s our update. Oh – and Leah now has 2.5 teeth. The third one is just coming in.
BTW, in case you were wondering? Yes – Mama’s nose was in fact broken.
Below are photos for the month of December. I’ll try to post more photos soon so I can get caught up.
We discovered the ridiculous adorable-ness of tights with Mary Janes printed on them. And oh – we now love to stand up. Or at least, we did in December. Now we are in a “twist and plunk” phase. When you stand Leah up in front of you, she twists and then plunks into your lap.
Hanging out with our little cousin. Leah almost tipped this kid over trying to pull herself to standing. That was her Thing in December – grab the hands and pull to stand. Now it’s grab the hands, pull to stand, twist and plunk.
There isn’t a TON to update, although I do have some new pictures to share once I finish up some writing projects. But I had to share this. Somebody posted on one of the EA/TEF awareness boards about the song “Wonder” by Natalie Merchant, and how it really resonated with her. I never paid much attention to the lyrics as a teenager, or maybe just really didn’t get the song. But I get it now, and it inspired me to make this little montage for Esophageal Atresia / Tracheoesophageal Fistula Awareness Month. I hope you enjoy it.
The winter seems to be flying by before we get a chance to stop and catch our breaths.
November was basically the month of “more.” About halfway through the month, Leah had her first little breakthrough in drawing a connection between a word and a sign. She was constantly wanting to stand, and we got her to the point where she would sign “more” . Then we transitioned that sign into eating time, so that she would sign “more” when she wanted more food as well. So far she is doing it pretty consistently, although she has not picked up any additional signs – unless you count the reverse of the “more” sign, which is her way of telling us to “get that out of my face.”
Both November and December have also been months fraught with rashes and winter illness. I am so grateful that Leah’s heart was repaired in October and that she is still getting the RSV shot this winter – I just know that she would be in the hospital right now without these two supports. She has been sick for the past three weeks or so, and just can’t seem to kick the stuffy nose and cough. She gets better, and then she gets worse, and then better, and then worse. She generally doesn’t have a fever, but at times her temperature has reached 102 degrees. At night we have to get up more frequently to vent her stomach – I think by breathing through her mouth she is taking in more air, and also whatever postnasal drip she has is clogging her esophagus. Either way, it’s not pretty. We have taken her to the pediatrician twice, and tomorrow we are taking her to the ENT to see if she has a sinus infection. Mama and Mommy are both sick right now too – Mama had laryngitis for almost a week! Leah’s rash is a whole other story. We think it might be either from teething or from something she is eating by mouth. It comes and goes, and shows up on her chin, near her eyes, on her nose and on her forehead. It’s the weirdest thing!
December has already mostly passed, and it hasn’t exactly been kind to us, even beyond all the germs raging through the house. My 95-year-old grandpa passed away on the first night of Chanukah, which cast a cloud over the entire holiday. My sister and I flew back east; he lived in California, but was buried on the east coast. I had laryngitis for most of the time I was there, and just as I started getting better over the past few days, I had a little accident at home. A thing flew off a shelf and my face broke its fall. I had a nice visit with the emergency room docs, and I think my nose is broken but won’t know for sure until I follow up with ENT on Friday.
Other newsworthy Leah events lately: Ms. Bug has cut a tooth! It’s either a molar or a bicuspid on the upper right side. She also managed to pull herself up successfully, one time, from sitting to standing in her crib. AND she scooted herself in a circle while sitting! She is also waving to people! And to cats! Lots of fun milestones.
So that’s all for now! Have some pictures, and even some video!