Man – every time I think I’ve almost caught up on pictures, a month flies by and suddenly I’m behind again!
So. I think we left off at Leah’s birthday party and baby naming. Aunti Staci and Auntie Kimmie threw a wonderful party for Leah’s birthday and baby naming. We were so pleased to be able to share the day with friends and family, and so thankful to Staci and Kim for giving us and Leah such a special day. They put so much work into everything, and it was totally awesome. I’m sure you will be shocked to know that the theme of the party was “ladybugs.” We are also thankful to Uncle Ralph for making sure there were photographers there to capture the awesomeness! His photographer friends took pics at the party and the ceremony, and then took some uber-cute portraits of LeahBug after the ceremony.
We are also super-grateful to our rabbi, who put together a beautiful and meaningful ceremony for LeahBug. She is the same rabbi who married us seven years ago – which is particularly fun because she actually called dibs on our wedding almost 12 years ago. Hehe. Mandy and I have known her since our college days and throughout our relationship, and it was such a beautiful experience to see her bringing everyone together again for this day in celebration of our LeahBug. Plus, she somehow managed to work a stealth Buffy the Vampire Slayer reference into each ceremony. Because she’s cool like that.
And of course we are grateful to our friends and family, who came out to celebrate this sweet baby and who have supported us and Leah throughout the past 13 months. At our request, many folks brought along items to be donated to the Los Angeles Ronald McDonald House. When we stayed there earlier this month, we brought with us bags and boxes full of items from their donation wishlist, along with almost $1,000 in checks and gift cards (a few people donated separately). It was so cool to be able to do something for LARMH, so thank you to everybody who made that possible!
As you already know, the rest of the month has largely been filled with surgery, dilations, and therapies. Leah’s last dilation was this past Thursday, and HOLY MOLY, the 9mm scope went through!!! SO exciting. Although they had talked about doing dilations less frequently, it sounds like we are back to going every two weeks for the time being – this time because I think they want to seize the opportunity to continue the progress she has been making since the steroid injections began. We have been feeding Leah a little spoonful of puree every day, and have also begun feeding her some thinned purees through the g-tube so that she will get some real food in addition to breast milk. She has been gaining a bit of weight (albeit slowly) but has sort of plateaued height-wise – she really isn’t taller today than she was in February. Hopefully once she starts getting food she will hit a growth spurt.
Next dilation is July 3.
The rest of the month’s stories will be among the photographs.
We asked my dad to lead everybody in singing “Ma Yafeh Hayom.” When we were in NICU and PICU we made more of an effort to mark Shabbat and havdalah every week; it helped us sort of note the passage of time and not let the days get away from us. On Friday nights and Saturday mornings I looked forward to singing Shabbat songs to LeahBug, and this was one that I sang often, especially to soothe her. I thought it would be sweet if we all sang it to her.
One day, Honi the Circle Maker was walking on the road and saw a man planting a carob tree. Honi asked the man, “How long will it take for this tree to bear fruit?”
The man replied, “Seventy years.”
Honi then asked the man, “And do you think you will live another seventy years and eat the fruit of this tree?”
The man answered, “Perhaps not. However, when I was born into this world, I found many carob trees planted by my father and grandfather. Just as they planted trees for me, I am planting trees for my children and grandchildren so they will be able to eat the fruit of these trees.”
Flashback: You might remember that a few months ago we met up with Sue, the founder of Binkeez For Comfort, who sent Leah a beautiful blanket while she was in the hospital. Sue brought Leah a “LoveBug” blanket made in Leah’s honor, and she also sent us a big box of gorgeous blankets to deliver to the children in the PICU at Leah’s hospital. Sue is also a photographer, and she recently sent us these photos that she took during our visit.
Okay – end flashback and back to the Mamarazzi pictures. 🙂
So… funny story… the day after Leah’s party, we all went out for breakfast for Uncle Ralph’s birthday. We got a little plate of fruit pieces for Leah, and she tasted each one – strawberry, pineapple, and watermelon. She’s never had pineapple before, so I made a mental note (and remarked out loud) to keep an eye on her because my sister is allergic to pineapple. She had a few little tastes but didn’t seem to like it much, so they moved on to a different fruit.
Cut to an hour and a half later – the kid has little red spots all over her abdomen and the back of her neck:
Naturally we assumed that these spots were the result of the pineapple, since that was the only new food to which she’d been exposed. She didn’t seem to have any trouble breathing, so I called the advice nurse just to make sure we were okay to keep her at home for the evening. The nurse said if she wasn’t having breathing problems yet she probably would not, and we should only bring her in if symptoms got worse.
Well… they got worse.
Let me just tell you… I would NOT be smiling… And really, neither was she for most of the day. But if you work hard enough you can generally earn a smile from this kid even under some pretty rough circumstances.
We told the doctor we had three theories: 1) Pineapple; 2) Amoxicillin, which she had been taking for ten days (because of the pneumonia); and 3) Her Measles-Mumps-Rubella shot, which had also taken place 10 days ago. I forgot that she had also worn clothes at her party which were not washed in our Free and Clear laundry detergent, but she never had any reactions to the sheets and gowns at the hospital, so I don’t know if that would be it. I’ve read that Amoxicillin can cause a rash even up to two weeks later. It’s not necessarily considered an allergy as much as it is a side effect. The pineapple, however, seemed to be the most likely suspect.
The doctor advised that we give her some Benadryl, and agreed with us that the pineapple was probably the culprit. She had some labs drawn just in case.
We didn’t get any results back for almost a week, and finally, when Leah went in for her hernia repair on June 6, I asked them to just look in the system and see if the labs had been completed. The labs were in the system – and they were negative for pineapple allergy! Go figure! I don’t know what to think. I imagine it’s possible that the antibodies for a pineapple allergy might not show up as quickly as 24 hours after the initial exposure. I really don’t know how it works. Most of the doctors I’ve asked have said an Amoxicillin allergy would manifest immediately, although Dr. Google (I stole that from Baby Walter’s mom) says this particular type of rash can appear quite some time after initial exposure. So I’m torn between the pineapple and the Amoxicillin. We have permission to try giving Leah another taste of pineapple, but I’m thinking maybe we will wait until we are up near the hospital, with a bottle of Benadryl on hand. Just in case. I’ve also heard that with food allergies, sometimes the first allergic reaction is less severe than future reactions. So we shall see.
“Here? Again?” Her surgery was scheduled at about 10AM, but she didn’t actually go in until some time between 1 and 1:30PM. I had a nerve conduction study at noon (no fun) and somehow had time to make it back before they took her in!
Wearing our ladybug gown from Gracie’s Gowns!
These two toys were birthday gifts from the Awesome Kids Foundation. They are PERFECT for Leah – so perfect that they were the first two things her Infant Stim therapist reached for the next day.