Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Early Intervention Update

Charlotte’s Early Intervention team came today to deliver their annual review. We met with Charlotte’s Occupational Therapist, Speech Therapist and Physical Therapist as well as her coordinator. Her Developmental Therapist faxed his report.

The bottom line is this–were Charlotte to be evaluated today she would not qualify for services. A year ago she was +30% delayed in speech, feeding and gross motor skills. Today she is within normal limits for her age (birth or adjusted) for everything. We’re a bit concerned that her spoken language is not a strong as her comprehension, but the team is not as worried.

So, we’re continuing with a quarterly OT eval, dropping to monthly PT and changing from weekly feeding therapy to bi-weekly speech therapy.

It was a lively and fun meeting. Our team genuinely adores Charlotte–their evaluations refer to her as beautiful, engaging, adorable (well, she is, isn’t she?!)–and they are thrilled with her progress. They also had some lovely things to say about us and the job we’re doing with her. I won’t elaborate because I’m not one to toot my own horn, but I will say that I was proud and quite touched.

We enjoy having these professionals work with Charlotte because Charlotte lights up when she sees any of them. They really are her team, her first friends, and she knows it. As we told Cheryl, Laura, Sara and Elizabeth, our success is theirs because their support, guidance and humor have been essential in getting us through the hardest moments.

We were also reminded tonight of how fortunate we are as Charlotte’s OT spoke. Charlotte has not OT concerns (fine motor and shoulder girdle). Given her reflux and feeding disorder this is, apparently, unusual. The skills that one uses to eat are essential in understanding one’s body in space (sensory issues), fine motor skills, and muscle development. That we’ve avoided any major delays or problems despite the feeding disorder is perhaps pure luck. Something more to be grateful for tonight.

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In our moment of gratitude, we pause to think of Phil’s classmate’s son Leo and his battle with an inoperable brain tumor. I invite you all to read a bit of Leo’s story and please keep him and his family in your thoughts an prayers.

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You’re Never Going to Believe This

Sometimes a picture is worth a thousand emotions, too. Charlotte took several willing bites of pureed pizza yesterday and today. And, as you can see, she picked up her little training feeding stick (I have no idea what to call that thing) and, while I was in the kitchen, started feeding herself. My eyes welled up. It was amazing. I don’t remember the last time she was interested in feeding herself. Today she nibbled on a chicken nugget, a food she loves but that she hasn’t touched in over a month. While you can’t see it in this not so great photo, she was really happy with herself. The more I grinned and clapped, the more she ate.

So, she can do it and she will do it. It’s matter of getting her to do it consistently. One day…


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Gaining weight but her pants still fall off

Charlotte has had a runny nose since Saturday and spiked a little fever in the wee hours of Monday morning so I took her to the doctor this morning. We ruled out ear or bronchial infections and decided that she just has a cold and her molars are erupting. The molars are really painful looking—you can see the four corners of the tooth, but you can also see the pink gum in the center. It makes me cringe just thinking about what has to happen to have the tooth come in fully.

But the real reason I’m writing is to update her weight:

22 lbs. 3 oz.

That’s Charlotte’s current weight. That’s up 4 ounces since August 28. I feel like we can watch her grow, she’s catching up so fast.


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M3


Today’s episode is brought to you by the letter M and the number 3. M because Charlotte discovered a new syllable “Ma” and has said nothing but that (okay, I’m exaggerating) all day. She says “Ma Ma Ma” and I smile. So she says it again. You can see how the cycle goes. It’s pretty cute and funny.

The number 3 because at dinner she willing opened her mouth and closed it around her spoon for 3 bites of puréed pizza. What is puréed pizza? It is high on the list of things I thought I’d never feed my child—a slice of white bread puréed with .25 c. Ragu cheese sauce and .25 c. canned pizza sauce. How delicious!

And, yes, Charlotte does watch Sesame Street. About 15 minutes at a time while I’m using her leg immobilizers to stretch her hamstrings. Usually just in time for Elmo’s World. Just ask her, she can sing the “la la’s”.


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Feeding Team Update

Charlotte and I visited Milwaukee today for her periodic check up with the CHOW feeding team. We met with Dr. Long (behavioral psychologist), Midge Kirby (nutritionist) and Amy Delaney (speech therapist). Then Charlotte had a check up with Dr. Blank (GI).

Charlotte was hungry—we sat down to feed her at 11:40 a.m., 40 minutes past her lunch time and 10 minutes into her nap time. She drank her Pediasure very nicely from the sippy bottles I’ve been using. She pretty much refused to eat any solid food for me. When Dr. Long took over she did take some willing bites of solid food, but not many. Given that it was nap time, she was very enthusiastic and happy.

Dr. Long is concerned that Charlotte is on “solid food strike,” as I call it. She’s never eaten more than a tablespoon at a time (with one very memorable exception), but in the past few months, I’ve been lucky if I can get ½ teaspoon into her at any meal. I’ve tried the technique of boring her with the same food for a period of time. It worked once for a brief period. Now were back to nothing measurable. Dr. Long is also concerned that Charlotte is not feeding herself. Me, too. Mostly for my own and Philippe’s sanity.

So, our new feeding strategy is to a) offer her only solid food (in the form of super-caloric purées) for 5 minutes before we even bring the Pediasure to the table, and b) encourage her to hold her sippy bottle or cup and her spoon. Also, I’m going to try the more robust recipes (like pizza, refried beans, etc) to see if the stronger flavors are more appealing. Apparently that works with some reflux kids.

Dr. Long also mentioned the possibility of doing a residential program or what I call “Feeding Boot Camp.” Charlotte and I would be resident at CHOW for 2 weeks. During the first week, a behavioral psychologist would feed all meals and I would watch from behind a one-way window. Then we’d transition to me feeding Charlotte. Dr. Long said that in kids like Charlotte—who have no anatomical or medical reason for not feeding themselves—the success rate is as high as 90%. She didn’t mention the reflux at all, though I think we all agree that it is real. The wait list is about a year for the residential program. We’re adding Charlotte’s name and hoping we won’t go, but it’s a real possibility.

Amy agreed with my concerns about the disparity between Charlotte’s receptive speech and her expressive speech. Quick definition: Receptive refers to what she understands; expressive to what she articulates in words.

Charlotte’s receptive speech measures at about 20-21 months. She can follow 2-part commands and she understands everything you say to her. She’s already laughing at being reprimanded (lucky me). However, she’s measuring 12 months in expressive speech. Beyond babbling, she makes no deliberate words. We think she means “cat” when she says “ba” because she looks right at Miles every time. Same thing for “pa pa” and Phil. But, that’s not quite where we’d like her to be. Two speech therapists have told us that keeping a bilingual home is not delaying her speech (Apparently this is an old wives tale. Makes sense to me; something we parents can tell ourselves so we don’t worry!)

Now, speech acquisition is a funny thing. Some 10 month old have 10 words but then don’t speak in even simple sentences for another 10 months. Some kids don’t speak until they can form sentences. It’s like reading—if there is no reason why they can’t learn it, they will. But the range of time it takes is huge. So, we know she will and soon. She babbles up a storm; full babbles sentences with intonation and everything. New sounds every day. And we’re so ready to hear what she has to say. The plan—to drop feeding therapy for now and have Laura come twice a week to concentrate on speech. If we can work out the schedule…..

Dr. Blank didn’t have any real commentary after her check up. Charlotte’s reflux is as controlled as we can get it, I suppose. She’s growing well (10 grams/day per their calculations). She’ on the growth chart! 25th percentile! All that is, medically speaking, good news. She concurred with the team’s other thoughts.

That’s it from Milwaukee. We go back in 2-3 months.


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Losing Shoes



Charlotte lost a shoe today. I’m totally bummed. It’s a really cute pink shoe with a green dragonfly on it. If you find it, please let me know. We were bike riding and during a rousing game of “push the tush” (in which Charlotte pushes my tush with her hands while I ride the bicycle) she must have taken a break to pull the shoe off. The shoes were a gift from my grad school buddy (my only grad school buddy from Northwestern) Danielle. I’m very, very sad.

Oh well. It’s just a shoe.

And, check this out, Charlotte has started wearing her pump in its little napsack. This is a huge accomplishment for me because it means I don’t have to a) chase her around with the pump during feeds or b) plop her in the baby zoo while she pumps. If I put the blue ice in, though, she topples over backwards. It’s kind of funny. She was toddling all around a birthday party today. Just a little weeble that one. Actually, as you might notice in her swagger in the “aft” picture, I think she may have a future on the runway.


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Today’s Stats

What Charlotte ate by mouth at breakfast: 85 mls. and about 1/2 teaspoon cottage cheese
What Charlotte ate by mouth at lunch: 140 mlls. and about 1/2 teaspoon peas
How much Charlotte vomited after breakfast: About 120 mls.
How much Charlotte vomited after lunch: About 120 mls.
How many pairs of pants Charlotte wore today: 3
How many shirts Charlotte wore today: 2 (better bib at lunch :))
How many outfits Mommy wore today: 3
How many times Mommy mopped the floor: 1
Cleaned the china cabinet: 1
How many times we read Here Come Poppy and Max: I lost count
How many times we read Bark, George: 6
How many times Charlotte said “Bark, George” (arr oorr): 10
How long Charlotte napped: 2 hours
How many loads of laundry I did (not folded yet): 3
How many times we talked to Philippe in Belgium: Not nearly enough