How To Put a Toddler to Bed in 100 Easy Steps: Special Needs Edition.

There’s an article circulating the Internets right now called “How To Put a Toddler to Bed in 100 Easy Steps.” I first read it during one of the nights when Leah was particularly difficult to put to bed, and remember thinking that there really ought to be a “Non-verbal toddler with special needs” edition because oh man, that list is JUST THE BEGINNING. After another fun evening putting the BabyBug to bed, I’m thinking Leah’s 100 easy steps would go a little something like this:

1. Move pumps and monitors into bedroom.
2. Note look of concern and suspicion on toddler’s face.
3. Get together nighttime meds and feed.
4. Scoop toddler up and place on changing table.
5. Straighten out pulse oximeter sensor. Obtain nasal cannula.
6. Ruin at least three Tegaderms attempting to place nasal cannula.
7. Achieve epic cannula victory only to watch tape slide off on account of toddler’s tears.
8. Dry toddler’s face, retape cannula, turn on oxygen, and connect pulse oximeter sensor to machine.
9. Vent toddler’s stomach.
10. Nearly spill stomach contents when toddler kicks syringe.
11. Administer nighttime meds, clean g-tube site and run feeding pump.
12. Extract toes from toddler’s mouth and retape pulse oximeter sensor. Put a sock over it.
13. Change diaper and wash hands with wipes.
14. Peel toddler’s fingers off of g-tube button.
15. Obtain pajamas and trip over pulse oximeter cord in the process.
16. Breathe sigh of relief that it wasn’t the feed bag tube.
17. Wonder how you didn’t trip over feed bag tube.
18. Extract feed bag tube from toddler’s mouth.
19. Peel toddler’s fingers off of g-tube button.
20. Put pajamas on toddler.
21. Spend five minutes snapping pajamas and pulling wires through various holes.
22. Retape nasal cannula.
23. Remind toddler that feed bag tube is not licorice lace.
24. Observe toddler get very angry, then very cranky, and then poop.
25. Change poopy diaper.
26. Resnap pajamas one-handed.
27. Set toddler in crib using only your elbows and go wash poop off of your hands.
28. Return and retape nasal cannula.
29. Fix pajamas and tubes. Replace sock over pulse oximeter sensor.
30. Begin nebulizer treatment.
31. Remind toddler that nebulizer mask is not a lollipop.
32. Remind toddler that nebulizer mask is not a chew toy.
33. Realize the only way this will work is to place toddler on your chest and hold nebulizer against her.
34. Try to avoid inhaling breathing treatment yourself.
35. Feel lightheaded and wonder if it’s the medicine or the lack of oxygen from holding your breath.
36. Remind toddler that nebulizer mask is not a jai alai basket.
37. Remind self that toddler is nonverbal.
38. Continue to think of things that a nebulizer mask is not.
39. Read a book to toddler.
40. Notice toddler becoming drowsy.
41. Notice drowsy toddler becoming cranky.
42. Change Lasix diaper.
43. Read another book to toddler.
44. Notice toddler becoming drowsy.
45. Place toddler in crib.
46. Observe instant wail.
47. Pick toddler up.
48. Appreciate immediate silence.
49. Begin to place toddler in crib.
50. Observe instant wail.
51. Pick toddler up.
52. Appreciate immediate silence.
53. Pretend to lay toddler down in crib several times to achieve siren effect.
54. Rock toddler to sleep on shoulder.
55. Place sleeping toddler in crib.
56. Observe instant wail.
57. Rock toddler to sleep on shoulder.
58. Place toddler in crib.
59. Realize that the cannula has flipped out of toddler’s nose, and adjust it.
60. Hold your breath as toddler whines.
61. Breathe sigh of relief as toddler falls back asleep.
62. Leave room and observe toddler on monitor.
63. Begin doing something entertaining.
64. Hear toddler gagging and retching on monitor.
65. Vent toddler.
66. Spill stomach contents as sleeping toddler kicks syringe.
67. Obtain new pajamas.
68. Trip over at least 2 cords in the process.
69. Change Lasix diaper.
70. Dress toddler in new pajamas.
71. Spend five minutes snapping pajamas and pulling wires through various holes.
72. Look up and observe toddler staring at you.
73. Brace yourself for the instant wail.
74. Pat wailing toddler until noise subsides.
75. Observe wide-awake toddler.
76. Offer rattling toy.
77. Watch rattling toy fly across crib.
78. Offer glowing musical toy.
79. Express relief that toddler is easily distracted by things that glow.
80. Tiptoe out of room and watch toddler on monitor.
81. Breathe sigh of relief that toddler appears to be entertaining self, at least.
82. Begin doing something entertaining.
83. Get lost in concentration.
84. Become startled by loud beeping.
85. Remember that toddler is easily distracted by things that glow.
86. Refasten pulse oximeter and replace sock.
87. Tiptoe out of room and watch toddler fall asleep on monitor.
88. Go to sleep.
89. Become awakened 15 minutes later by whining.
90. Extract toddler from tangle of wires and change Lasix diaper.
91. Rock toddler to sleep on shoulder, place in crib, return to sleep.
92. Wake up to fix beeping feed pump error. Go back to sleep.
93. Wake up to beeping feed pump error. Beg spouse to get this one.
94. Wake up to fix beeping feed pump error. Return and collapse onto bed.
95. Get up to fix beeping feed pump error that started midair as you fell back into bed.
96. Wonder why feed pump hates you and what you did to make it angry.
97. Go back to sleep.
98. Wake up to pulse oximeter alarm and retape nasal cannula.
99. Lovingly watch precious child sleep for several minutes before returning to bed. Sleep through the remainder of the night.
100. Pretend to be asleep for the first beep or whine of the morning so spouse will get up.

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[Edit: I realize I’ve left out a few steps, mostly involving Cat #1, who soars over the cat gate in Leah’s doorway and has to be let out at least three times during the course of this routine because he can’t get back out, and Cat #2, who uninstalls the cat gate entirely and has to be nudged out of the room like a soccer ball. So we’re basically playing Whack-a-Kitty through this whole routine.]

[Edit #2: And I’ve failed to include the multiple steps throughout the evening/morning that consist of these instructions: “Watch monitor. Make sure toddler is still breathing.”]

[Edit #3: I mean, basically you’d need another 100 easy steps for all the other stuff that didn’t make it into this list… and just wait ’til you see the “How To Prep For Your Toddler’s Day: Special Needs Edition” list. Just kidding. That would be a really long list, and not nearly as entertaining.]

Deep thoughts on a Wednesday

With the Down Syndrome community in the midst of a Twittertwister over recent comments by biologist Richard Dawkins, I guess it would be remiss of me to not make a comment on it. A few days ago this guy (apparently a well-known scientist?) tweeted, in response to somebody saying they didn’t know what they would do if they had a prenatal diagnosis, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” His later apology only made things worse. Two gems: First, “what I was saying simply follows logically from the ordinary pro-choice stance that most of us, I presume, espouse.” And then, “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”

I want to step aside from this for a second and talk about Leah. I’ve hoped over the past year that Leah has shaped people’s thoughts about Down Syndrome the way she has shaped ours. My hope has been that if one of our friends or community members got a prenatal diagnosis of Down Syndrome that they would remember Leah when deciding whether to proceed with the pregnancy or terminate. But then I had a horrible thought – what if all they think of is how hard it has been for us? So I want to take a moment and clarify that 1) we have not regretted keeping Leah for a single moment, and 2) most of Leah’s medical problems have been about a) her premature birth, and b) her long-gap esophageal atresia, which was the reason for the premature birth in the first place. Our experience is quite typical for a family whose child has long-gap EA, but is not typical for a family whose child has Down Syndrome. And as we have discussed before, the odds of Leah’s type of esophageal atresia occurring together with Down Syndrome are one in a million.

So please, if you ever find yourselves making a decision about what to do with a prenatal diagnosis of Down Syndrome and find yourself thinking about our experience with Leah… please think about those sassy little pigtails and the proud smile on her face when she reaches a new milestone. Think about her giggles and the look on her face when we go through the car wash (oh boy, just wait for that one). I’m not telling you what to decide, because every family needs to make the decision that is right for them – just please don’t let our story influence your decision negatively!!

Now back to the substance of what this gentleman said. If you don’t like political or philosophical discussion this is the point at which to stop reading this post. SO, here we go:

I strongly disagree with the notion that a pro-choice stance automatically results in a pro-termination stance upon receipt of a pre-natal T21 diagnosis. Pro-choice means PRO-CHOICE. It means you support a woman’s right to choose what happens to her own body. I think there are actually different ethical considerations when you’re dealing with an unwanted pregnancy vs. a wanted pregnancy. With an unwanted pregnancy the moral issue is whether it is acceptable to force a woman to go through pregnancy if she doesn’t want to. But once you’re dealing with a wanted pregnancy, the choice is no longer about the woman’s right to her body – because she has already made that choice. It becomes instead a decision about what the woman (and partner, if applicable) feels is best for her child. Parents have had to make heartbreaking choices about terminating pregnancies in which the fetuses were simply not viable or would have had little to no chance of survival. It’s a crushing loss and it’s unfair to put a political spin on what these parents have been through. Personally I think you’re treading a thinner line when you are dealing with diagnoses in which a child can lead a happy and fulfilling life. But then again, who defines “fulfilling,” and is there a requirement for how long that life has to be? I mean – does one terminate for Trisomy 13 or 18? For Tay Sachs? Most children with T13 and T18 don’t live past a year, though some live into adulthood, and Tay Sachs gives a few years at most, the end of which involve some major deterioration. That’s a lot of suffering. And then what about Down Syndrome? Cystic fibrosis? A missing limb? Cleft lip? How about if it’s a girl and you wanted a boy? Where do you draw the line, or is there a line at all? I’m not asking what people should be allowed to do – just what they might consider when making these decisions. Raising a child with a disability is a big commitment. It is. You can’t do it half-heartedly and you have to know that it will change your life’s course. But that is also true if I take out the words “with a disability.” I like to hope that expectant parents who don’t feel prepared to raise a child with, say, Down Syndrome or CF would be willing to let the child be raised by others who feel differently, but in the end, it’s their choice.

Now, here’s where we get to the really cloudy ethical area – what is the doctor’s role in all of this? There are two big issues that I see coming up over and over again: poor and outdated information, and pressure to terminate. They often go hand in hand.

First, parents are often given an extremely bleak picture of the life of a person with Down Syndrome, and I believe that providing decades-old information is actually robbing women of their freedom of choice. Imagine that you’re told your child will lead a miserable and painful life and die in infancy or early childhood, and if they survive childhood they will never be able to learn very much or work and will probably get dementia and die in their 20’s. Now imagine you’re told instead that your child will always need some degree of support and will be more prone to some serious health issues, and it will mean a lot of hard work and patience on your part, but with early interventions and a good support system the child can lead a happy life and have friends and be beloved by their communities, and possibly even have a job or get married when they’re older. Might these two offerings lead to different decisions on the parents’ part? Maybe, and maybe not – but how can we know until doctors provide more accurate and holistic information?

Back in the 80’s, there was a child born with Down Syndrome and esophageal atresia, just like Leah. The doctors could have given the child a g-tube for feeding and then repaired the EA/TEF (it sounds like this child had the more common Type C), but instead they told the parents that the child would have a miserable life and would only suffer, and that the humane thing would be to let the baby starve to death. The parents trusted the doctors and agreed to let their baby boy starve to death. This case went to the state’s Supreme Court because there were several families that were willing to take the child in and make sure he got medical treatment, but the parents refused to allow this because they truly believed they were doing what was best for their child by letting him die, and the court agreed that it was the parents’ decision. This child was JUST LIKE LEAH. And they let him starve to death by withholding medical treatment. I realize this is a different issue because the child had already been born, but still – parents going through the crisis of learning of an unexpected diagnosis are in a vulnerable state, and doctors need to give trustworthy and current information about what that diagnosis means. Then, and only then, can the expectant parents make an informed decision about how they want to proceed.

Second, I have heard from a LOT of women that their doctors pressured them to terminate their pregnancies even after they declined abortion. Dear doctors: The freedom of choice is about the FREEDOM to CHOOSE. And if a woman CHOOSES to proceed with a pregnancy after a prenatal diagnosis, NOD YOUR HEAD AND MOVE ON. She’s made her choice. Focus on keeping mother and baby healthy and safe and preparing for appropriate medical interventions after delivery.

We feel very lucky that we did not get pressure like that with our OB/GYN providers. We had already made our choice, but it would have been very stressful to have to argue with doctors when we were already going through a tough time (especially with the suspicion of EA). What did happen is that once we had confirmation that our baby had Down Syndrome, we met with the geneticist and were handed a copy of Babies with Down Syndrome. That is the proper reading material in this situation – not some 30 year old pamphlet with little to no information about early intervention. Then we were directed to the high-risk OB for further consult and a more detailed anatomy scan. And that high-risk OB did not mention or suggest termination even once. He treated us like any other couple concerned about the health of their child-to-be, made the proper arrangements for us to deliver at the hospital where the pediatric surgeons were located, and arranged for us to meet with the surgeons – a meeting which of course never happened because Ms. LeahBug decided she was ready for the world 8 weeks early. 🙂

I know it’s not going to get any easier for us as Leah gets older and her developmental delays get more pronounced. And things haven’t exactly been easy thus far (though largely because of the medical issues). But Leah is the sweetest, most precious little girl, and I can’t imagine our lives without her. She chose us, and we chose her back.

Popping in for a quick update

Good afternoon, everyone! Shabbat Shalom! I just had to say hello and be grateful for a moment. The Butterfly Fund recently posted LeahBug’s Amazon wishlist, and several people we’ve never met have sent Leah gifts, including some new diapers and covers (because she’s outgrowing the old ones), a sweet outfit, a toy, some books, and medical supplies – AND somebody sent her the ARK Z-vibe, a therapy tool aimed at oral stimulation to help with speech and feeding. We are super-psyched to start working with this as it comes highly recommended by other parents of children with Down Syndrome. Just need to do some reading first as there are specific exercises that help with particular issues.

This past week has been a reminder of how truly awesome people are. Not that we needed a reminder – we are grateful every day for your support and generosity and it continues to amaze us.

<3

A week later…

So! I’m terrible – haven’t blogged in a week! What has been going on? Hm. Leah had another dilation on Thursday. She definitely handled this one better. The previous procedure was performed under fluoroscopy, and I think maybe because that takes longer her recovery was a little bit more difficult. The aftermath of this third dilation was more similar to the first one. They were able to stretch the esophagus to 10mm circumference, up from 9mm the week before. They didn’t go any further as it was already a tight stretch. We are taking this next Thursday off, and Leah will have another dilation on March 6. They also replaced her g-tube with a slightly bigger size (still the AMT Mini-One). I got to meet a couple of the AMT reps since they were at the hospital at the same time and the surgical NP introduced us. Could I resist poking fun at the Mini vs. Mic-Key thing? Of course not. But I told them that Leah met both of them and likes Minnie better – so hopefully that made it okay. 🙂 She has definitely handled the Mini One better than she did the Mic-Key button – she had terrible granulation with the Mic-Key. With the newer, larger Mini we’re seeing a little bit of leakage, but hopefully that will subside once she’s adjusted to it.

We also received the results of Leah’s sleep study this past week. Leah does have mild obstructive sleep apnea, as we thought she might. Because she was already on oxygen to address the suspected sleep apnea, the “plan of action” will remain the same: She will stay on 1/4 liter of oxygen at night. Alas, this means we have to keep putting stickers on her sweet little cheekies. We leave them on for a few days at a time so we don’t have to rip them off every morning, but it’s still so sad to see the red circles on her cheeks when we finally do take them off. She does have such darling little cheekies.

We have been trying desperately to keep LeahBug healthy this week, as Mommy, Uncle Ralph and Auntie Jo all have the plague. Or, you know, a cold. So far I have managed to escape, but I’m not taking anything for granted – Emergen-C and Yin Chiao every day for Mama! I’m convinced that our cat Lobo is responsible for the spread of the plague through our house, since he goes into everybody’s room and demands attention. I’m thoroughly neurotic, so I refuse to touch him while people in the house are sick. At least my 18-lb black cat (Jeepers) is a LITTLE more loyal.

The other new development this week: Leah has discovered “blowing raspberries.” Grab the umbrellas!

I’ll catch a raspberry for you soon – but in the mean time, enjoy these videos:

And now, photos!

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This kid is ridiculous. For real.

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OM NOM NOM

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RIDICULOUS, I SAY! LOVE THIS FACE.

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LOVE THIS FACE SO MUCH.

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Smooooooshy face

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My kid is beautiful. That’s just all there is to it.

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“Um, Gran? Hello Kitty? I don’t know about this…”

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A little collage I made for all the new people who liked Leah’s page this past week – nearly 400 in total! A sweet Mama of ADORABLE TWINS with Down Syndrome (like, SO CUTE – you don’t even know. You have to click.) was kind enough to share LeahBug’s link on her boys’ Facebook page, and a whole bunch of people decided to start following the Bug! Yay! More cheerleaders!

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Om nom nom, delicious speech therapy tool. (Looks like a toothbrush!)

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Aunti Staci tried very hard to get BabyBug to put the paci in her mouth by herself. Grandpa Bill says it looks like she’s smoking it.

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More cute face.

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The decline from sadness to sleep in roughly five minutes. She didn’t even cry – just made a ton of those sad pouty faces.

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Close-up on sad pouty face

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“This is my SLEEPY CRANKY BABY face.”

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I’m not sure what this face is. Caption, please?

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Dilation Thursday! She always looks so teeny tiny in the crib when they bring us back to the recovery unit.

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Back to sleep on the way home.

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“Oh? Don’t stick out my tongue? You mean… like this? How about like this? What about like this?”

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This outfit is so freaking cute.

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Is there such a thing as happy pouty face?

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Sweet bug

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BFFs.

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Laundry day! This one goes on delicate.

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Nakey Baby can’t be trusted not to pull on her g-tube.

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What is that face? Silly girl.

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“Here, let me pre-rinse this for you.”

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What a ham. Kosher ham. Kosher honey-baked ham.

BabyBorg

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In case you’re wondering, this is what an Angry Baby looks like when she’s tattling to her Mama on FaceTime.

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And this is what she looks like when she realizes that resistance is futile and she might as well get some beauty sleep.

Can’t wait to see my favorite ladies when they get home in the morning!

An unexpected but awesome experience

Recently we received a phone call from the executive director of the LA Ronald McDonald House, who wanted to know if we would be willing to speak briefly at a board member retreat dinner for Ronald McDonald House Charities of Southern California. They wanted to invite a family to share their experience with the board, and since we are relatively local it was possible for us to attend on short notice. I am so glad that we did. It was a really special experience. We shared Leah’s story with a room full of [100] people without whom we could not have gotten through the past year, because they make the Ronald McDonald Houses happen. They met one of the families they work so tirelessly to support. And we had the privilege of hearing the story of how the organization began, as shared by Fred Hill, whose daughter Kim’s illness was the catalyst for the creation of the first Ronald McDonald House in Philadelphia nearly 40 years ago. It’s amazing how something so wonderful could grow out of something so devastating. They showed a video of Kim speaking when she was a little bit older, and she said she didn’t like being sick, but in a way she was glad it had happened because out of her illness this great thing had been created. Now that’s perspective! Unfortunately she passed away several years ago; the radiation she had as a child caused brain tumors later in life. So sad – but such a powerful story. It was a real honor to meet Fred and his wife Fran after the event, and they were gracious enough to take a photo with us.

Also, the food was really, really good.

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BabyBug visits the Mousiest Place on Earth!

Well, as you might have figured out by now, we spent our very first family vacation at Disneyland. We were able to take this trip thanks to our awesometastic cousins, one set who gifted us with park hoppers, and the other who arranged hotel reservations for us. We are so grateful that we got to take some time to step away and just be a little family on a little vacation. I love that in LA you don’t have to stray far from home to have a great weekend getaway.

And we did! We had a blast. On Friday morning we had breakfast with my grandparents, who live closer to Disneyland than to our home. I am so psyched that we got to see them – they had not been able to visit with Leah since she was discharged from the hospital and have been aching to see her. They were delighted to get some quality time with the little Bug. My grandma didn’t want to give her back when lunch was over!

On Friday night, we headed to the park to meet cousins for dinner, but first we stopped at City Hall to deal with some administrivia involving disability accommodations for Leah and for myself. Rant at the end of this post – feel free to skim or skip.

Anyway. Thankfully the issue was resolved. In general, we found that the cast members were really hit and miss about being sensitive to disability issues. We got trapped in the line at the train station because the wheelchair entrance wasn’t clearly marked and there was an access door at the entrance to the platform – but by the time we realized there was a separate entrance for the accessible car, we were trapped in line by 100 other people and there was no way to get out of the line without mowing them down with Leah’s stroller. The cast members were not apologetic at all and said, “Next time, use the wheelchair entrance.” Hello – we tried! On the other hand, I was impressed at Minnie’s house; I asked Minnie to not *touch* the baby during our family picture because of her special needs and immune issues. Before taking pictures, the photographer double-checked to make sure that using the flash was okay. Most people wouldn’t think to ask about that. It was fine to use the flash, but I’m glad she was conscientious enough to ask.

Here are a few of my favorite moments of the trip:

1) Leah’s face during her first time on “Small World.” She spent half the time looking around at all the bright colors, and the other half staring up at Mandy in adoration: “DOLLIES AND BRIGHT LIGHTS! YOU ARE THE BEST MOMMY EVER!” She was so sad when it was over.

2) Leah’s second time on Small World: She fell asleep in my arms during the wait, slept soundly through the ride, and then cracked open her eyes with a bleary greeting to the world just as we were pulling back into the daylight.

3) Flying baby! Leah LOVES to be held up in the air like a little flying baby! She grins like a little goofball. She flew all over Disneyland!

4) Leah got charmed by a magic wand. She started crying in one of the stores and suddenly a cast member appeared out of nowhere with a magical light-up wand, which silenced her instantly. Our first question: “Where can we get one of those?” Ha. I wonder if that cast member’s job is to make sure there are no screaming babies in the stores. Mission accomplished!

We also took Leah on the Haunted Mansion, the Mark Twain riverboat, Peter Pan, Snow White and Alice in Wonderland (plus the train, as I mentioned). Leah’s favorite part of the dark rides? The magical glowy polka dots that appeared on her mommies’ shirts when the black lights came on (we were wearing red shirts with white spots). Ooooooh!

For us, it was interesting to experience Disneyland not only as mommies, but as mommies of a child with special needs. I think there develops some sort of new radar – like “gaydar” but for special kids – and somehow you just sort of notice people more frequently. Maybe it was the little “Please wash your hands before touching mine” signs on Leah’s stroller (from the RSV shot clinic) – we probably had almost as many people making exclamations over those as we did over the baby! One mom asked us if our insurance had covered the RSV shots – her little girl has cystic fibrosis. Mandy met two moms in the baby care center whose little ones also have g-tubes. It turned out one of them was born with TEF/EA! Not Type A, but still pretty uncommon! So random and cool. We also spotted seven different people with Down syndrome over the course of the weekend. Curiously, only one of them was a child. Not quite sure where to go with that detail but I suppose there could be many reasons.

So anyway, yeah – we had a blast at Disneyland. It turned out to be a pretty popular weekend – the Tinkerbell 5K, 10K and half-marathon took place each morning before the park opened, and apparently Sunday was an unofficial “Dr. Who” day, so there were geeks EVERYWHERE. I spotted a guy wearing the “And then Buffy staked Edward. The End.” shirt. LOVE.

It was also a pretty dirty weekend. There were kids sneezing all over the place, and nobody seemed to wash their hands. While we were at lunch I saw one little girl at the next table sneeze, and then her dad helped her blow her nose into a napkin and then threw the germ-ridden napkin onto the table. OMG. We carried disinfectant wipes everywhere.

On Sunday night, our cousins took us out to dinner at the Jazz Kitchen for my birthday. SO YUMMY. Probably one of the best dinners I have had in a very, very long time. Leah slept through the whole thing, even after the band started playing. The perks of having a NICU baby, I guess. She really does sleep through almost anything.

Other things going on this week:
-Leah ate about 2 teaspoons of sweet potato at her speech therapy visit!
-We had Leah’s assessment interview with the county office of education, which provides some services to kids with special needs.
-Mama got the stomach flu. Yeah. We worked so hard to keep LeahBug away from the germs, so they got me instead. Better me than her, for sure – but it was definitely no fun. I spent all of Monday in bed with fever, aches and chills.
-Last week, we brought Leah to meet our IVF doctor! She slept through the whole thing, but it was still very sweet. In her sleep I just know she was thinking, “Hey, thanks for making me!”

Exciting things happening next week:
-SWALLOW STUDY on Monday!!! They will do a video swallow study to examine Leah’s swallowing function and see if she is ready to really start taking in some food orally.
-Regional Center meeting on Wednesday! We will meet with Leah’s service coordinator and hopefully get this show on the road! Leah’s Kaiser OT appointment was just cancelled for the second time in a row, so she basically hasn’t had any OT services in nearly two months. It is absolutely ridiculous and unacceptable. Once we have this meeting, the Regional Center can start setting up therapists for Leah and her services can begin.
-Disneyland. Yeah… we have one day left on our park hoppers, so we are going to go back for a little day trip when it’s less crowded and do some of the things we didn’t get to do the last time because it was a holiday weekend and very crowded.

So that’s it! Pictures, followed by rant. Enjoy. Ha.

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“Oh look, a foot!”

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Silly girl has her leg!

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OMG. NOBODY TELL BABY. When we were in PICU, one of the nurses told baby that some imaginary nurse was making her do all the awful things she had to do, like replacing the repogle or helping with blood draws. I named the imaginary nurse “Fabio” because all the other names I suggested already belonged to real nurses.

Here’s our vacation!

January 16

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“Rumor has it we’re going to Disneyland. Allow me to share my feelings.”

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Let’s look at that up close

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And a little closer…

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BabyPie checking out our bed

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“I’m comfy, Mama. You take the crib tonight!”

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I like the other picture better, but I’m sharing this one too, largely because she looks like such a little StinkerBell here. “Teehee.”

January 17

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Dressed for the occasion!

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It’s a small baby after all!

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Only in SoCal would this be the front-and-center display in the middle of January.

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Grandpa Bob

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BabyBug and Grandma Marilyn having a Very Serious Conversation.

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Do I have the cutest grandparents, or what?

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That was an exhausting lunch! It’s hard being so loved.

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Cartwheel? High kick?

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Trying to roll onto our side

January 18! Mama’s birthday!

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“If I can just… get… this… into… my… mouth…!”

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We hadn’t even started our day and she was already knocked out!

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“You’re going to make me wear this in public?”

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“OH GOD. NOT IN PUBLIC.”

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If BabyBug has to wear Tender Grips, we shall make them cute!

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“Mamas. There’s cute, and then there’s cuuuuuuuuuuuute. I think this might be too much cute.”

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On the Mark Twain Riverboat

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SMOOCH

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Cheeeeese!

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Waiting for Small World

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“ARE YOU SERIOUS?”

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“IS THIS FOR REAL?”

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“BEST MOMMY EVER!”

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An enthusiastic disco thumbs up.

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Later that day… WeepyBug was tired!

829
PoutyPie. Bordering on Ponyface.

793
Glowy dots! Magical glowy dots!

863
Dinner at Flo’s!

January 19

902
“Mama, can I please have your face?”

1267
“Mama, for your belated birthday present I shall look like you. You’re welcome!”

1154
“Fingers are nummylicious.”

1148
Just ’cause she’s cute.

896
Shnuggling

874
Tummy time!

1250

1023
Minnie!

1033
Small World, take II

1046 1048
I think Leah’s favorite part of Disneyland might just be her feet.

1144
She slept through the whole ride, and then woke up just as we re-entered daylight: “Mama, I just had the weirdest dream!

1241
LeahBug! There’s no crying allowed at Disneyland! It’s like, in the rules or something! Looks like someone didn’t get the memo.

1237
Mommy and Bug at the castle

1235

1011
The whole family at the castle

1225
“Look. At. This. Hat. MAMAS.”

1220
SILLY baby!

990
Silly baby got her foot!

1005
Goofy!

970
“I swear I can fit this in my mouth!

1197
“Mommy, please don’t throw me in the well! I’ll wear the hat, I promise!”

936
Baby loves to fly.

932 933
Loves. It.

925
“Mommy, can I please have your face?”

1116
“Tada! You like my shirt?”

1121
Hi, Auntie Beth!

1260
Auntie Beth and Uncle Brian

1125
We love our Cool Auntie Erin

1261
Disney: 1. Baby: 0.

January 20

1173
Sweetheart

1167
Serious Bug

1165
Just kidding!

Rant ahead:

Continue reading

What do we want? Bolus feeds! When do we want them? Now!

WHEW. This little bug has kept us BUSY this past week! Wow. The total g-tube pullout tally is at 4 right now. Last night and this afternoon were the 3rd and 4th. Poor bunny. Her stoma site is so red. Bolus feeds cannot come soon enough. The faster we get her back to regular feeding (where we give the feed over a short period of time and then remove the extension for several hours), the better it will be for her little tummy. And the methadone dosage is dwindling, as is her patience for pretty much everything as a result. Such a crankpot! Mommy Mandy took her out in the stroller to roam the halls of RMH after midnight tonight because that was the only way to get her to sleep. We are bracing ourselves for tomorrow; both the dose AND the frequency are being reduced. I think that’s a pretty big leap in one day. Waiting for baby’s doc to let me know whether we can add one more day in to soften the blow.

A little logistical update: We head home on Sunday, but will be back at RMH for a few days the week after next because BabyBug has six appointments over a four-day period. It will make everybody a lot happier if we don’t have to deal with that from home. Anyway, it will be nice to see everybody again after having been gone for… six days. After that, hopefully we won’t have to come back for a long time. I will be sure to post lots of pictures when we get home. The lighting in the room at RMH is kinda lousy so I haven’t gotten very many good pictures, but you can bet the Mamarazzi will be going wild once that little girl gets home. Watch out, kitties! Here comes BabyBug!

And finally, a philosophical musing.

I posted on one of the TEF/EA boards asking whether other folks had any tips for us about helping Leah get through this horrible withdrawal period. One of the moms there contacted me because she also lives in LA and her child has been a regular across the street at CHLA since birth. I had a ton of questions and she sent me to her Facebook page, where I spent a good chunk of time revisiting everything they have been through over her child’s several years dealing with these issues. I read something in one of her comments that really resonated with me. After her son came home from the hospital as a baby, a lot of people started asking, “So he’s okay now, right?” It was, of course, an expression of relief and shared joy at his homecoming after a long and difficult journey. I totally get it. But it’s a tough question with no good answer. When I read it, I felt a little stab in my gut. The simple truth is that no, many kids with EA are never quite “okay,” if by “okay” you mean “healthy,” “all better,” “out of the woods,” etc. That makes it a little bittersweet to get out of the hospital. We are THRILLLLLLLED to take Leah home and get to the business of living our new life as a family in our family home and not in a hospital room. But “okay” is going to have to be a relative term in our house. In a way it already is; I have multiple chronic illnesses and the simple question, “How are you?” always leaves me at a loss for an honest answer that doesn’t make people regret they asked. Like… I had my surgery, so I’m okay, now, right? Well, no – it’s more complicated than that. I usually just stick with, “I’ve been better, but I’ve been worse.”

We’ll have to navigate that question in the same terms for Leah – still more so, because even if she takes off running and never looks back when it comes to feeding, she still has Down Syndrome. She is still going to have to deal with medical and developmental problems for the rest of her life. She’ll still be at risk of hospitalization every time she catches a cold or flu. We’ll still have the possibility of a future heart surgery looming over our heads. And then there’s the whole question of her future once she’s an adult. So is she okay now?

But of course Mandy (always more optimistic than I am) pointed out that we want her to have as normal a life as possible and not have people always focus on her health problems and disabilities or just see her as a sick child. And of course that’s totally true – we want her to live life to the fullest, as independently and mainstreamed as possible, and not have her health problems always be front and center. It is easy enough for me to be pessimistic and say that her life is going to be a series of doctor appointments, but that would be a pretty negative way of looking at things. She’s going to have a great life and have lots of fun with the tons of people who love her and care about her and want to see her thrive. And if some of those people happen to be doctors and nurses and therapists, so be it. The more the merrier. In that sense, I guess she’s okay.

A little something to tide you over…

How you know your child loves you, #132: Your baby has been fussing and fussing but you’ve been waiting to see if she’ll calm down. When you finally go to pick her up, she stops fussing immediately, looks up at you with an expression of sheer adoration and peace… and lets out a giant poop.

I love you too, BabyBug.

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BabyFace in the sunlight! With no window in between! I’ve got lots more pictures for you, and another update… but the little sweetie pie has not been allowing me much time on the computer. It will happen tomorrow!

A pooptastic morning

Well, our little bubbeleh had an exciting morning. It turns out that her central line has been leaking. Not sure whether that’s what was leaking last night, and I’m pretty sure the g-tube was also leaking, but the central line was dislodged from where it was supposed to be, and “stuff” was coming out and her wee shoulder was looking all swollen.. Surgery came by to take it out a little while ago. Not long before that, Leah had to have a mini bath because she had a giant poopsplosion and then had to have her leads and cannula changed because it was all so terrifically messy. The good news? Mama Lisa missed all the poopy excitement because she went to go get the car smogged (woohoo.). Sorry, Mommy Mandy.

photo 2
This is our baby.

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This is our baby on drugs.

Any questions?