A long-overdue update with random bits of news

This will be quite a summer. I realize it’s been some time since I last updated, so let me catch you up quickly:

1) I don’t think I mentioned that we finished the LA Ronald McDonald House Walk for Kids and, with your help, raised almost $2,400 for the House! Thank you again!

2) We had a lovely Mother’s Day brunch at Aunti Staci’s house – that girl knows how to entertain!

3) Leah turned 2! We had a fun rainbow-themed birthday party, complete with rainbow fruits and veggies, a peanut butter and jelly sandwich bar with a rainbow assortment of jelly, rainbow cupcakes, and rainbow sherbet. Here is what you need to know about the party:

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Leah turned 2!

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Leah is a ham!

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Messy cake is not her thing!

4) Some big news: It turns out Leah had a sinus infection for a good two months after her admission to the hospital in March. We took her in several times, and she even saw ENT, but nobody suggested anything about a sinus infection until mid-May. At that point her pulmonologist and ENT discussed her case and concluded that Leah should have her tonsils and adenoids out when her ear tubes go in. That will take place later this summer, likely next month. We are hoping it will only be one night in the hospital. We had an incident a couple of weeks ago in which Leah took a nap almost an hour after eating and woke up with avocado coming out of her nose, so she is having an esophagram this week and will likely have an endoscopy when they do the rest of the procedures next month.

5) Here’s the super-big exciting news: Mommy Mandy is, at this moment, en route to China to teach high school students for the next four weeks! She went with two other colleagues from work. What an amazing opportunity and experience this will be for her! It will be a different kind of amazing at home. Break out the organic cheesy puffies and kegs of goat milk with prune puree – Mama and Bug are gonna partay! (If by partay you mean really really miss Mommy and Skype with her every single day until she comes home, at which point we will ask her if she bought us anything pretty).

6) More big news: Leah starts her new therapy school program next week! She will officially be in school five days per week, and her private appointments will be decreased to five per week as well (not including doctor appointments). She’ll still be the busiest baby I know.

7) Still MORE big news! Leah got her very first haircut! She barely noticed it was happening because her eyes were glued to the TV the whole time. I couldn’t really get a picture of her looking at me, because her eyes were glued to the TV the whole time. But we finally did it!

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8) Leah went in a swimming pool for the first time! She loved it!

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That is all for now – but I suspect you’ll be hearing from me a bit more often in the next four weeks!

Walk for Kids!

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!

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A momentous occasion!

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.

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Happy April Fool’s Day! The real momentous occasion is that Leah starts school tomorrow. We will post pictures!

Walk for Kids!

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, the moment of truth!

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.

Once Upon a December

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.

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In December, this was safe. No more. Leah is VERY into cat tails right now.

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December was a very musical month.

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We formed a one-baby band.

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We went to the doctor to see if we had a sinus infection.

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We mocked Aunti Staci’s sadness.

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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.

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Silly selfies!

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Sometimes a baby has to pout to get her way.

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Caption, please!

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We still haven’t quite figured out what caused this intermittent rash on Leah’s face.

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It didn’t seem to bother her, though!

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Little goofball.

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It’s hard to feel bad for this cat when he chooses to sit so close to the toddler.

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Um, excuse me? Ms. Bug? You’ve got a little shmutz… right there…

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Mama and Aunti Staci went to the east coast for Great-Grandpa’s burial.

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We couldn’t light Chanukah candles in the hotel room, but thankfully Mommy and Bug helped us out.

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Holiday party at BB&E (our cousins’ house)

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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.

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LadyBug Baby from Uncle Bry and Auntie Co!

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Uncle Bryan

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Uncle Bryan and why is there so much sun in the middle of December?

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We already know this baby is a gift…

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“Be NICE to the kitty. GENTLE with kitty.”

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“GENTLE.”

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“But I NEEEEEED to pull his tail!”

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“Forget this! I’m going for it!”

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Aaaand suddenly kitty tails are no longer safe.

Winter blues

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!

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“This? Again?”

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Those piggietails are still my very favorite.

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“You were supposed to vote, people!”

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A special moment at our friends’ baby shower.

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Too Cool For School, But Just Cool Enough For OT, PT, Speech Therapy and Infant Stim.

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DollyBug

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Mama’s BFF

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Swallow study

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Somehow this picture makes me want to call her a little ragamuffin.

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Making a new friend!

Our first sign:
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MORE!

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Play date!

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She put something in her mouth and nommed on it! Something EDIBLE!

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Conducting a spoon orchestra

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Deep thoughts by Bug.

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Great-grandma!

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Mama and Bug. That chair was mine when I was a baby!

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Leah in Mama’s chair!

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Trouble, with a capital T.

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A one-baby band.

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She looks so grown-up here.

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She wasn’t really this scared, but I love the way the photo came out.

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That’s more like it.

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Family portrait!

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Can’t handle the cute.

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Seriously. Babytoes.

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Someone was not impressed.

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Very not impressed.

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“More pictures? Okay. Take a picture of this face!”

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Love.

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Love and sillies.

A belated update

Whew! I seem to have updated every venue but the blog! Here’s the update we sent out to the GoFundMe site:

We are delighted to report that Leah had her heart repair on Wednesday, October 8 and came home the following day.

Once in the cath lab, Leah’s doctors discovered that the VSD was larger than initially anticipated. There was a great deal of blood flow through the hole in Leah’s heart, and she was in heart failure. They also found that they had a little Goldilocks on their hands – the device they had intended to use turned out to be too big, and the backup device they had ordered was too small! Thankfully, the third device they tried was juuuuust right. They ultimately used a “plug” intended for VSDs in a different part of the heart.

There is still some leakage around the plug, but already her enlarged heart appears to be a more normal size, and the doctor feels that the leakage has a good chance of closing up as the tissue in her heart grows around the plug.

One major complication that we are watching out for is the potential for blood clots, since they use major arteries for the catheterization. Leah’s right foot was quite cold in the hospital, indicating diminished circulation. We brought her back up to the doctor on Friday because we felt that while it had improved in the hospital, it was not improving at home, and had gotten a little colder than it was when we left the hospital. They did an ultrasound and thankfully it looks like there is no clotting right now, but they have put Leah on low-dose aspirin and will be watching her closely – we have another visit on Monday. We are very grateful that her doctors are attentive and responsive to our concerns.

Thank you all for your thoughts and prayers during this nerve-wracking week, and always!!

Here goes!

Today Leah’s doctors will try to fix her VSD using a method that is not typically used for this type of defect. They will use the blood vessels in her leg to send a catheter up to her heart and attempt to close the VSD with a device that is typically only used for different types of holes in the heart. There is a very real possibility this might not work, but the doctors want to try to see if they can help Leah avoid open-heart surgery. We are grateful for any and all positive thoughts and prayers today. Thank you!

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Back in the saddle again – if by saddle you mean baby jail

Every time I plan a long photoblast it turns into an update that we’re in the hospital! The title pretty much says it all, but I might as well get all this down for future reference.

Last Sunday night (the 7th) to Monday morning, we had quite a miserable time overnight. Leah was up very frequently gagging and groaning and crying, and in the very early morning had a fever of 103.4. She also had four little red specks on her leg. We decided to take her up to urgent care. Of course, by the time we were at the doctor’s office Leah was in a delightful mood, clapping her hands and beaming at the doctor.

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He concluded that she likely had a viral infection, but that she looked good and we should just keep an eye on her and bring her back if she got worse. I pushed back at him a little bit since Leah tends to surprise us with funny things that aren’t your run-of-the-mill virus, but he seemed pretty confident that was the problem. Still, by the time we left the elevator and stepped into the lobby, he had called me back and recommended that we get a chest x-ray just in case. We had another rough night on Monday, and I actually wound up sleeping in the recliner in Leah’s room for a good portion of the night because it seemed pointless to leave the room when I would have to come right back in next time she woke up. She finally fell asleep around 2AM.

Tuesday morning the doctor called us back to let us know that the chest x-ray wasn’t conclusive for pneumonia, but her lungs looked unhappy enough that they wanted to treat for pneumonia just in case. Okay, he didn’t say unhappy – but I can’t remember the term he used.

So Leah had her antibiotics, and gradually improved throughout the week. We kept her home from therapy on Tuesday and Wednesday because of her continued fevers, but by Wednesday and Thursday we were starting to see more improvement (and get more sleep). On Friday night everything just sort of went to the birds. We had friends over for dinner and had an absolutely lovely visit, and Leah even went to sleep relatively on-time. Then around midnight she woke up fussing and gagging. This continued all night, and early Saturday morning she spiked a fever of 102.6. By about 5AM we noticed that she was breathing pretty fast, and by 6AM she was practically panting in her sleep. Based on what we’ve seen in the past we didn’t feel like we needed to get an ambulance, but we definitely needed to get her to a doctor Saturday morning. So that’s what we did. We got an early appointment and they admitted her from the pediatric urgent care clinic – but not before making us shlep all over Sunset Blvd to get labs and x-rays done. We still don’t understand why they didn’t just admit her first and then do testing – they weren’t going to send her home with the way she had been breathing.

The nurse at the peds clinic scared us for a minute. He came out and was so somber and told us that she was going to be admitted and that the doctor would be speaking with us soon. We asked him if the labs showed anything and he said the doctor would speak with us. So naturally we started worrying immediately. Our big concern at that point was this enterovirus that has been going around. But then we asked him again if he could tell us what the labs showed and he said something about low red blood cell count, and at the same time I got an email showing that she had high white cell counts. And the nurse was so somber. So we started getting a little antsy and worrying that maybe we should be worrying about leukemia. The L word sort of lurks in the back of the brain for parents whose kids have Down Syndrome since it’s more likely to show up in our kids than in typical kids. And he seemed so solemn! But then we also considered that he is used to breaking the news of hospital admission to families that haven’t spent months on end in the hospital, so perhaps he was being solemn for that reason. So we tried not to worry too much, and thankfully what worry we did worry seems to be for naught. Leah is anemic – very anemic. The working hypothesis seems to be that Leah caught a virus or something, and that it may or may not have developed into pneumonia (they are treating her for it out of precaution), and that her anemia has probably developing for some time and isn’t necessarily the cause of her shortness of breath but certainly isn’t helping. From Saturday morning to last night, Leah was requiring daytime oxygen; she was desatting to about 89-92% without it. She was satting as low as 84% while sleeping, and that’s with her old O2 level of .25L. As of today she’s back to her usual O2 regimen, except that when we take her home we will need to keep her on O2 while she naps and while she sleeps instead of just overnight.

But wait – there’s more. Leah has a lot of congestion in her lungs, and the doctors doubled her Lasix to ward off heart failure. Her cardiologist came in yesterday and advised us that he now recommends that Leah’s heart be repaired next month instead of waiting until she is 4 or 5 year old. His previous recommendation was to wait because there was no indication that we needed to do anything immediately. But at this point he feels Leah is just going to keep bouncing back into the hospital with respiratory infections all winter and that is going to be hard on her lungs. It will be safer for her to go into this cold and flu season with a repaired heart. So we spent the night contemplating open-heart surgery.

Today, the pediatric cardiac interventionist came in to discuss the possibility of repairing Leah’s VSD via cardiac catheterization. It’s a procedure that is done pretty consistently for PDA repairs and for ASD repairs, but typically not for the VSDs. But this is the way of the future, apparently – they are developing ways for more and more of these procedures to be done by less-invasive means. If we go ahead with this procedure it will take place in only a few weeks. So Leah is getting a blood transfusion tonight to boost her iron levels since she wouldn’t have enough time to replenish her blood count and iron levels between now and the future procedure with just iron supplements.

So we have a big decision to make. Go with the far more dangerous procedure that WILL be a total fix – assuming Leah actually pulls through open-heart surgery? Or go with the far less dangerous procedure that still has risks and may or may not fix the leak (again, assuming Leah pulls through), but is far, far less risky and has a significantly better recovery time? Letting Leah go through this winter without a repair is a pretty risky proposition as well. So. That’s where we are right now.

Also, this:

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