Charlotte's Journey Home

Just a Regular Kid, Sort Of


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A Little Gallery

Coordinating with Eeyore!
Charlotte was giggling like crazy in between photos, but I just couldn’t get her to smile for the camera.

Making New Friends
On December 24th we went to Milwaukee to visit Tracy, Jared, Mhari and Ava. They gave Charlotte this adorable purple elephant. She loves it! (Mhari, age 5, and Ava, age almost 3, are avid blog readers.)

Happy Hanukah!
Wearing the same bib her cousins Julie and Jamie wore, Charlotte watches the first candle of her first Hanukah get lit. Then she helped us to unwrap gifts–she ate the paper :).

Hard at Work
My favorite days are Fridays. We start our morning with Sara, Charlotte’s physical therapist. Charlotte works hard with Sara. Some days she loves it and giggle much of the time. Some days she screams and screams. My job is, as always, “distraction action,” doing anything I can to stem the crying.

In the afternoon Laura, Charlotte’s Feeding Therapist (a specialty within Speech therapy) comes to help us sort through the eating challenges. She came today because I’m at the end of my rope with Charlotte’s recently acquired distaste for eating. She’s been refusing the bottle vehemently for several days. She did get Charlotte to eat, despite the hissy fit “little miss tiny ‘tude” pitched. Baby ate, then fell asleep on Laura’s shoulder. (Laura is only pretending to sleep.)

We’re so lucky to have such wonderful professionals helping us learn how to better take care of our kiddo.


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Steady Growth

Yesterday’s weight check: 13lbs. 13oz. That’s 6 oz. in 12 days–exactly 0.5 ounces a day which is the doctors’ goal. The crazy weight gain of 1 oz/day seems to have slowed down and was probably just “catch up”growth. To be sure, however, we’ll go for another weight check next week. I’m really hoping that’s the last weight check. She has to visit the pediatrician’s office monthly for her Synagis shot so I pray that her monthly visit can also be her weight check.

We’re still going around and around with the insurance about the helmet. It is covered, but requires “pre-determination,” whatever that means. The doctor’s insurance specialist is working with BCBS to get them the information they need. Seems to be complicated though it is clear that the helmet is covered. Keep your fingers crossed.

Little angel seems a bit off today, maybe because of her flu shot yesterday. She didn’t nap all afternoon. She’s now upstairs sleeping so I’m off to continue the housework.


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All I Want for Hanukah….


All Charlotte wants for Hanukah is her two front teeth. And, look, she’s got them!

Thanks to everyone for your outpouring of support. Your phone calls and emails and tough love mean a lot to me.

We’ve decided to go ahead with the cranial remolding band (the official insurance terminology). Charlotte is already gorgeous, this can only make her even prettier (like that’s possible!)

And, since it is the season of miracles, it looks like our insurance will cover it 100%, as durable medical equipment. Go figure. We just need all the preauthorization to happen.

The STARscanner means that Charlotte does not have to be molded for the helmet. All of the measurements were taken yesterday by the scan photo. Once we have preauthorization, it should be about 10 days until we have the helmet. (I’m trying really hard not to call it the “hell-met” or “that wretched thing.” Bear with me.) While Dr. Vicari’s clinic is in Glenview, the craniofacial main clinic is at Children’s downtown. This is good new for me–Charlotte will need to be refitted weekly or biweekly and this way I won’t have to drive the highway to do it.

By the way, if you’re wondering…yes, Charlotte’s eyes are light-colored. Some days they look gray-green. Sometimes they look blue. We think she gets them from Philippe’s mom.


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The Last Straw

We finally admitted reality yesterday and consulted with a plastic surgeon about Charlotte’s head shape. If our concern about head shape comes as a surprise, it is because we have not really talked about it. It is the one thing that truly, truly upsets me and freaks me out.

Anyway…with the Torticollis diagnosis (see 8/3 entry) came the strong possibility of positional Plagiocephaly. Technical definition: “a malformation of the head marked by an oblique slant to the main axis of the skull.” (Plagiochephaly.org). In other words, rather than a rounded rectangle, the head looks like a rounded parallelogram.

My dearest hope was that our early involvement with physical therapy and our hard work on Charlotte’s neck strength and movement would help her slightly flat head improve. So, I made the appointment for December in order to give as much time as possible for self-correction.

So, can you tell that I’m avoiding getting to the point here?

Yesterday Charlotte was assessed by Dr. Vicari, a physical therapist and an orthotics specialist. Her head was photographed using a STARscanner, a digital camera that creates a 3-D picture, eliminating the need for a CT scan. It took about 2 minutes (a CT scan would have taken +45 and necessitated sedation).

The doctor presented me with an image and a diagnosis and went over it carefully. I’ll spare you the details, mostly because it upsets me too much to commit the details to type. The upshot: Charlotte has moderate positional Plagiocephaly or flat head. It is more prominent in the rear of her head. If you look at her head from above, you can notice that her ears are not evenly placed on her skull, one is set further back on her head. Here’s a sample image of positional Plagiocephaly. This is not Charlotte’s head; just an example.


(Charlotte’s head does not look nearly this bad. I’ll post some pictures in the next day or two. If we can scan her STAR summary, I’ll post that too.)

This is a normally shaped head:

Why did this happen? Who knows. There are a number of possible contributing factors:
–Charlotte was definitely “squished” a bit in utero. The sonographers had a difficult time measuring her head circumference because she was “so low
–She was in the hospital for 7 weeks in a hospital bed with almost no tummy time (hard to be on your tummy when you have a major incision on your chest and a gazillion tubes sticking out).
–She spent time spent in her papasan chair at home because she was attached to oxdidn’t and we didn’t know what else to do with her.
–The universe has decided to send one more test of my sanity.

What do we do? Dr. Vicari recommends that we go with an orthotic helmet. She’d wear it until she outgrew it, about 4 months. Since her case is “moderate,” he thinks we could also see improvement through physical therapy. He’s inclined to go straight for the helmet because she has so much else going on. I’m inclined to wait because she has so much else going on. We agreed that I’d come back with her in January to see how she’d progress and go from there.

(PAUSE FOR TEMPER TANTRUM)
I HATE the idea of a helmet. Seriously hate it. Why? Okay, be honest with yourself–who among us hasn’t had a split second of judgment and/or pity for parents whose kids have a helmet. Who hasn’t had to work hard not to stare? And if one more person tells me the damn things are cute, I’ll scream. If it’s so goddamn cute, go get one for your kid.

(TEMPER TANTRUM OVER)

Temper tantrum aside: The truth is Dr. Vicari is right. Charlotte has so much going on that getting to do her therapy with her daily is a challenge. Many days she simply eats and sleeps, like a newborn. Other days, she eats, vomits, and sleeps. So, I get to add an emergency bath to the day. I’d love to be able to read to her every day, feed her solid food (or as I call it “wet food”–too many kitties!) every day, go for a daily walk, etc. But the normal, fun things just don’t happen.

As much as it looks like we’re on the road to “life as a regular kid,” we’re not even halfway there. Feeding her can take up to an hour and a half. We’re in a phase of tons of appointments due to the recent g-tube insertion:
–we go to the hospital weekly to change the surgical dressing (that will end in late January);
–weekly weight checks;
–monthly RSV prophylactic injections;
–weekly PT and feeding therapy (they come to us, thank G-d)
–occasional specialist visits (today was supposed to be GI, but I rescheduled)

The upshot is: we will have to make a decision this weekend whether to order the helmet now or go back in January to re-assess. Philippe and I both tend to think that waiting until January is simply delaying the inevitable. But, this really is the last straw. I can’t bear to be the mom that people stare at and pity. I really can’t.

The added fun will be fighting with insurance about this. I just found a terrific website, a mom’s blog of her daughter’s treatment for positional “plagio”, where the mom talks about fighting with BCBS Massachusetts to get this covered. And Massachusetts is one of the best states for insurance. We’re insured out of NY–use your imagination.

Finally, this simply isn’t done in Europe. Explaining the helmet to Philippe’s family and friends will be difficult. I do so hope they won’t be judgmental of the unknown. I hope they’ll have it in their hearts to realize that, if we choose this, we’re choosing what is best for our baby.

For more information check out Hannah’s Noggin.


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7 Months Old Today

Charlotte is 7 months old today. She had a great day, playing with her physical therapist, Sara, and visiting with her Feeding Therapist, Laura. Here’s a picture of Charlotte hard at work with Sara. (I’m cheating–this picture is about 3 weeks old.)

Her official weight, as of yesterday, is 13 lbs.. 7 oz.! She has gained 8 ounces since her last weight check on November 30. That’s basically an ounce a day. As she grows, we have to feed her more and more. So the challenge continues.

To put this all in perspective: when Charlotte first visited the pediatrician in late June, she weighed 8 lbs. 10 oz. Back then we were urging her to finish bottles of 60 ml (2 ounces) and it was cause for celebration when she did that. Her goal for each day was 350 ml. Today, her bottles are 180 ml (5.5 ounces)and our daily total is meant to be 785 ml. As I said to her Feeding/Speech Therapist today, it seems like every time Charlotte is about to get cross the finish line, the line is moved. I’m hoping that her caloric requirements will plateau soon.

And, baby Charlotte loves her peas. She finished all her peas and cereal this afternoon and then, 30 minutes later, finished a whole bottle. No wonder she went to bed without a peep at 7:15!

New pictures soon, I promise. In the meantime, here’s our little family, taken over Thanksgiving weekend. We’re so glamorous!


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Grow, Charlotte Grow


Our little bruiser weighed in at a whopping 12 lbs. 15 oz. today. If you’re not memorizing her weekly weights like we are, that’s 9 oz. more than last Wednesday. Our doctors hope for 0.5 oz. gain per day. This is more than 1 oz.!! Since her lungs sound clear, we think it’s all good news. We’ll have a weight check next Thursday to confirm the trend and its safety. Then we will taper off a bit.

We had the Hollister dressing changed on her tube yesterday. It’s pretty simple to do and, in theory, I should do the next changes at home. In practice, I really can’t look at the tube coming out of her belly and the dressing freaks me out a bit. So, I’ll probably wimp out and go every week to the surgical nurse.

If anyone is interested in what the G-tube looks like, I’m happy to send a photo. It’s really not gross or graphic, but since I have a hard time with it, I’m not sure it’s appropriate for public consumption. On the other hand, maybe it disturbs me because it’s my little baby’s belly and I’m close. Perhaps a photo isn’t so bad. Let me know–if enough of you want to see it, I’ll post it.

And, as much as I hate the thing, Charlotte is growing. Yippee!