The Croup

030SOZO030.jpgTurns out Sophia probably has the croup.  Zoe had had a little cough for a day or two and then Sophia had a day where she couldn’t keep any food down all day.  Her night was just as bad (which never happens).  As the doctor later explained, she was spitting up into her nose, which created more mucus, which then made her stomach more upset, which then made her spit up again.  What a cycle!

I figured it was too good to be true when Sophia fell asleep immediately and then when I brought Zoe in, she went right to sleep as well!  About 20 minutes later, Sophia woke up spitting up and that made Zoe cry since she wasn’t fast asleep enough yet.  I can’t even remember now how we got them calmed down that time.  Not long after, Sophia really started spitting up.  I knew something was really wrong when she didn’t calm down when I picked her and still didn’t calm down when I turned on the light.  The poor thing was so upset.  After that I tried a bath (since she needed her hair washed anyway after spitting up).  She eventually calmed down to sniffles after the bath and Papa’s silliness.  She seemed to have a temp but I didn’t dare give her any medicine she couldn’t keep down.  I did give her some a little while later and that seemed to help.  We’d thought about running out to get Pediasure but she seemed to be keeping things down for a couple of hours.  She actually went about 5 until she spit up again, so she did get some food to stay in.   Zoe got a little nap back in her mini crib while we did this.  After she woke up to eat, I put her back in their room, but soon enough Sophia was coughing again.  By that point they were not happy to have me trying to comfort the other and were equally unhappy when I tried to rock them both.  In the end, I decided Zoe needed some peace and quiet to finally get some sleep, and she couldn’t sleep in her mini crib without waking John, so I took Sophia downstairs to the rocker (the same rocker I’d just been thinking we could return to Grandma since we didn’t seem to use it any more).  Sophia and I “slept” here for a couple hours, so in the end, she only missed out on about 3 hours of sleep!  She got yet another bath that morning, so was extra-clean for OT.  She was so tired, though, that she just wanted to isolate in the kitchen or watch us from the edge of the room.  Usually, she’d be thrilled to have 4 adults focusing on her while Zoe slept.

Luckily, we were able to get in that morning with one of our primary docs.  Between the nurse and the two of us, we were able to get a rectal temp (which is still the only thing that is accurate for our little miss heart patient).   We’d held off on the next dose of Ibuprofen so the reading wouldn’t be disguised.  Her temp was 102.9, so I’m sure that was part of why she was so uncomfortable.  We were also concerned about her G-tube site as it has been leaking more which is making the surrounding skin more red (because of the stomach acid leaking onto it).   We are just supposed to put her stomach cream on more frequently and call the doctor if that doesn’t work.

The doctor said Sophia’s barking cough sounded like croup, and she could give her a steroid if it got bad, but otherwise there wasn’t anything to do but put her in the bathroom with a hot shower running to try to loosen the congestion.    She said that otherwise Sophia seemed fine, and we should just give her Pedialyte for a day or two so she could keep something in her stomach that wasn’t as hard to digest as the fatty milk she gets.  It was such a bummer that she’d lost all the weight she’d just finally gained.  I was so excited after bringing her in the previous week for a weight check to find out she was gaining, but she’d lost a whole pound with this illness.  The doctor also had Sophia’s white blood cell count checked (yes, another blood draw).   Thankfully, it was normal, so it is just a virus.  The doctor was thrilled that Sophia was crying about being touched–because it is developmentally and age appropriate.  I guess it is much better than the doctor my mom had who chastised her because I cried at an appointment (as a baby).  Sophia really seemed to be having separation anxiety when she was sick, but she seems to be over it now as she just waved good-bye to me this morning with no tears at all!  She seems to be on the mend, still coughing some at night, but back on her milk and keeping her food down for the most part.  Soon we should be back to the back pack again.

We left Zoe with our nanny when we went in and realized while we were there that we hadn’t even left her our phone numbers!  It was such a crazy morning and we’d never left them alone before, so it just slipped our minds.  We weren’t gone long and all was well when we returned, but it’s just a reminder of all of the things we need to take care of as parents.

I was hopeful that Sophia’s little spell might help her get hungry and start to eat more.  Our speech therapist told me a story of a boy who recently did that.  Sophia did eat a little better one of the days, but on the others was probably too sick and tired to care much about food.  Our nutritionist does not want us to withhold any calories at home to try to induce hunger, so I’m afraid at some point we are going to have to go into the hospital for one of those intensive feeding therapy programs, but I guess we’ll see how things go.

After that night of very little sleep, John consented to letting them sleep in their separate rooms again until they got better.  They’ve been sleeping pretty well, for the most part.  Zoe’s cough seems to be pretty much gone, but she is still junky with a little runny nose.  Poor thing always seems to have a red nose.  Her worst trauma this week was scooting off the bed onto the floor.  I don’t think I’ve ever heard her cry so hard (she is normally so tough, so this really must have hurt)!  John just got so used to her not moving around on the bed when he was getting her pajamas on, that he left her unsupervised for a minute and down she went.  He’s not doing that any more.  I feel like we should have had padded floors installed before the kids instead of wood floors.

Zoe has learned to “blow your trumpet” with her little paper towel roll like the baby in one of her books.  She practiced pulling up to stand from the floor today during PT and is also on the verge of crawling.  She orients herself forward in quadraped now and falls toward things.  She can also sit up on her own by rolling to her tummy, getting on quadraped, putting her leg in, and moving back.  She no longer stays where you leave her.  If you sit her up, she gets on her hands and knees; if you put her on her tummy, she sits up.  Soon she’ll be cruising away from her sister (and her Mama and Papa).  We are also trying to feed her foods with more texture, but she thinks it is a lot more fun to push them back out with her tongue.  I usually give her something to play with while she eats so she focuses on that and will just let me feed her.  One day I was letting her play with one of her favorite things:  ice.  She got the cube in her mouth sideways and didn’t know how to get it out.  Her whole face was turning red because it was so cold, but she didn’t know to spit it out.  Eventually, I helped her get it out and all was well.  I think it helped prepare her for the Ben & Jerry’s her Papa fed her after that.  I was on the phone with a client one night while feeding Zoe, and she was being pretty loud, so John offered to finish feeding her, but when I looked back a couple of minutes later, she had a Ben & Jerry’s ice cream container…so much for the list of approved dairy items!  Guess it is never too early to indoctrinate her into the family treat.

Not only did Sophia go to the doctor this week, but she also went to the hair stylist and the dentist.  Poor girl; right when she’s decided she doesn’t like any strangers touching her for any reason, we torment her even more!  The trauma of the haircut was exacerbated by her missing her first nap since we tried the new system.  I figured she was going to hate it no matter what, but I imagine in retrospect it could have been less traumatic had she been well rested.  She screamed for the entire haircut (except when another little girl came over to offer her a koosh ball).  She was completely uninterested in all the cool kid things they had in the shop.  The stylist said:  “I’ll just focus on being fast.”  I thought that was a very good idea.  She did say at the end that she’d had kids who were worse (I’m not sure if that was supposed to make me feel better?).

The dentist actually went a little bit better, but probably only because it was early morning, and she was well medicated for her temp and cough.  They had told me before that they didn’t usually see kids until age 3, even though the Down Syndrome literature says they should be checked earlier.  But, she’s had these dark spots in her molars.  The bottom two went away eventually, but there is still one in one of the top molars.  Some of my co-workers convinced me that it could be decay, and I really should get it checked out.  The dentist’s receptionist didn’t think it was neurotic and thought we should come in, too, so we did.  The dental assistant wanted to know if Sophia would let her look in her mouth.  I said I thought it would work best if I held her upside down for them to see the tooth, so the dentist comes in:  “I hear you’re hanging her upside down?”  In the end, we sat in the chair, with her leaning backwards over the edge, while the dentist kneeled by her and the assistant shone the light wherever Sophia’s mouth happened to be at the moment.  He actually got his little tool in there and said it wasn’t soft, so wasn’t decay. Apparently, it is bright blue.  He couldn’t explain it, but thought it could have something to do with her reflux and meds, etc.  He figured it was okay since the others went away.    So, that was good news.  I don’t think there are many types of medical professionals left that we haven’t visited…

One night last week, Sophia’s G-tube site was really leaking, and we were really concerned about how to keep her food in.  Her pajamas were soaked shortly after I changed her.  Somehow it seemed to get better by morning, but we did get in with the specialist as soon as we could.  We also tried the GI docs (even though ours has left), and predictably, they said they couldn’t really help us since we hadn’t been there for a year (unbelievable!).  So, now we have an appointment to form a relationship with a new GI doc; maybe he’ll have some helpful suggestions as well.

Today was the day Sophia went back to pediatric surgery to have her G-tube looked at.  They decided to increase the width and length of her MIC-KEY button, which should help with the leaking.  She’s had the same size since we first went down to the smallest size, so I guess it was time to move up.

This was also the doctor we went to for her “pectus carinatum” (the pointed chest she got from open heart surgery).  We asked him about why he wanted to wait until she was 10 to do the brace, when we thought she’d be much more cooperative now.  He said that the whole treatment is really experimental.  Apparently, he read an article from Europe and just started doing this.  I guess the focus is usually ages 10-15 because it tends to get worse when kids grow taller.  He thought it would be fine to try it with her now as long as we understood that she might have to do it again.  It is not supposed to be painful; she just wears it while she sleeps.  Since she is already in a sling, it seems like a good time to just get it over with.  Because hers is from surgery and not genetic, that might make it more successful now, too.  I would think by age 10 kids would also probably be teasing her about it (not like we’ll be able to shield her from teasing, but we sure want to try).  So, now the trick will be to get her to sit still enough to be fitted for the custom-made brace.  Luckly, she hasn’t learned to bite these people.


  1. Auntie Erin says:

    Gosh you must be exhausted!!! I’m sorry to hear Sophia’s been sick and her teeth are spotted with blue and Zoe fell off the bed and all. Having to figure out how to help Sophia in the middle of the night when she’s inconsolable and you must have been tired—well, it sounded pretty rough. Am glad you’ve got it under control Debbi! You’re an amazing mom.

  2. Cousin Kelly says:

    Wow!! You have had a very busy week, not to say that every week isn’t busy for your house! I hope both the girls start to feel better soon!

  3. Wow. Every time I check in on your blog that is the only word that comes to mind. Wow, wow, wow. What you guys do. What you guys do while continuing to do everything else that you do. What you guys do without blinking, fretting, or sighing. What you guys do while apparently laughing, embracing, and growing. Each time I check the page, I am astounded, impressed, humbled, proud, thrilled, and speechless. I trust and hope that you actually DO blink, fret, sigh, and even cry from time to time, so that I am reassured that you ARE human. If not, I’m going to have to call Marvel Comics because they’ve missed a couple of superheroes over on Milwaukee Ave. Love you all. Christina