Update

Charlotte has been doing really well lately. We just had a follow up yesterday and here are her stats:

Weight: 9.8 kilos (21.6 pounds)
{15%tile for actual age/ 50%tile for adjusted age}

Height: 72 cm (28 inches)
{2%tile for actual age/ not on the char for adjusted age}

Head Circumference: 42 cm
{not on chart for actual or adjusted age)

Head: Charlotte has what's called "microcephaly", meaning, her head is more than 2 standard deviations from the average head for age and sex. More specifically, Charlotte has micoencephaly, which is a small brain, thus accounting for the small head. {We know this because Charlotte suffered a pretty severe stroke in the cerebellum, leaving very little brain matter in that space} However, luckily for Charlotte, she doesn't appear to have a small head, so it's all good. Her pediatrician just wanted it to be an official diagnosis. Yay for more labels. :)

Hearing: A new one, right? Charlotte's had a bit of a "regression" in the vocal department as of late. Prior to our move, she was making vowel sounds, and the occasional consonant/vowel sound. Lately, it's only been noises, which is good, because it means she can manipulate the vocal cord, but bad because she's not making any progress verbally. We want to check her hearing to make sure this is not a factor in her speech delay. Right now, we're only going for the standard hearing test, but if she still has a vocal delay in say, four to six months, we'll have to go for a sedated hearing test.

Lungs: Doing well! We're weaning her from some of her diuretics, and so far, so good {knock on wood}. She's been consistently off of oxygen for over a month now, and we're thrilled to see how stable she has been.

GI: Still the same. J-tube feedings 18 hours/day. We're hoping that soon (in the next few months) we can start working towards G-tube feedings, and then possibly condensing those feedings so that they are at specific times (called bolus feedings) rather than the continuous feeding. The hope is that we can eventually get her to "eat" during regular meal times, and then start weaning those tube feedings so she can be hungry enough to eat by mouth. Basically, we've got a lot of therapy in our future. And I'm not just talking OT :)

Developmental: We've started with our new therapists here in California. We're seeing Occupational Therapy twice a week, Physical Therapy twice a week and Speech Therapy once a week (maybe adding another one on? who knows). Charlotte has started to crawl since we've moved her, and we're thrilled with her progress. She still has a problem with rolling over from her back to her front, so if she ends up on her back, she just pushes herself backward around on the floor. The back of her head will never have hair on it :) She is, however, transitioning from crawling to sitting, and from sitting to crawling. It's not elegant, but it gets the job done, and you can tell how excited she is about all of it.

ENT: The ENT team here has pretty much taken over the role of managing Charlotte's Sleep Apnea. Right now, that's probably her biggest struggle. Last night, she had 10 desats, a few into the 70's. She hasn't needed to be resuscitated in almost two months, but she does need repositioning and stim to bring her out of some of the more significant desats. She's starting to tolerate her BiPAP mask less and less, and honestly, I just don't know what to do for the poor girl. We have an appointment the beginning of August with the Airway clinic (pulmonology and ENT together) so hopefully they will have some better ideas about how to help her sleep. We still don't have a real reason why she's having the central apneas, and for that matter, we don't have a real reason as to why she's obstructing. We're mostly hoping at this point that she'll grow out of it. But that can take years (if it ever happens at all) and kids kinda need to sleep :)

Overall, Charlotte is happy. She's playing a lot more now that she's mobile, and its awesome to see her and Caleb play together so well. Basically, I just love this gal. She's a keeper (in case you were wondering!)

Back Again, Back Again

Charlotte pulled out her J-tube. (Actually, I pulled it out. But that's not important, right?) Here in California, that means an admission, not a simple visit to Interventional Radiology.

This is not awesome. But I'm pretending it is :) Woohoo....

An Update

I haven't written a post like this in awhile, but for recording keeping sake, here's Charlotte Amalie's latest medical run-down:

Weight: a whopping 7.8 kilos (17.5 pounds)

Length: 63.5 cm (25 inches)

Eyes: Her left pupil still dilates differently than her right (scaring nurses who meet her for the first time, and neurologists) but we now know that the eye is related to the paralyzed vocal cord. We have our next follow up in April, and hopefully she'll still have a clean bill of health.

Vocal Cords: Left is still paralyzed, but she's making great improvement with how well she is compensating with the right vocal cord. We've started actual speech therapy (not just feeding therapy with the speech therapist) and we're slowly introducing sign language. She will be re-scoped in March

Lungs: Charlotte fluctuates from needing 1/8 to 1/4 O2, depending on her heart rate and her oxygen sats. She needs 1/4 a night about half the time, but can almost always be weaned down to an eighth by morning. She's still taking her diuretics to keep her lungs dry, and also has a few inhalers that keep her open and breathing. At her last pulmonary appointment they said she is currently better than she ever has been. Awesome! We're thinking that after RSV season, we might just be able to kick this oxygen. So maybe around May? We sure hope so!

GI: Charlotte's now on 20 hour continuous feeds. She's doing so so so SO much better on the continuous feeding than she was on bolus feeding. We have an appointment in two weeks to meet with the Complex Care Center at CHOP and we'll decide then if we want to start condensing her feeds again or if we're just going to roll with the continuous feeds. We believe that if she can just make it another 9 months or so, she'll be developmentally much more capable of handling the reflux and such. So we'll decide if we just keep plugging along for another 9 months or if we try to handle the reflux now. Handling the reflux now means another "event" is possible and she's more uncomfortable, but it's much more physiologically "normal" for her to have bolus feeds than it is for the continuous feeds. The continuous feeds help her reflux, but they stunt her gut and stomach development. So yeah, flip a coin. Any suggestions?

Developmental: Charlotte is capable of rolling over, but I wouldn't say she's rolling over. She's done it a few times, but it's not a daily occasion.  She's also capable of sitting for 20 seconds or so. These are our goals to master by HER FIRST BIRTHDAY (holy dang, it's a month away!).  Cognitively she's doing well, tracking and interacting and playing a lot more than she used to. It's amazing how quickly skills develop. We're also hoping that by her first birthday she'll be passing toys from one hand to another and that she'll be able to reach out and grab something more efficiently. Currently she reaches for things, but she has a bit of a hard time actually grasping things in an efficient manner. We're working on it :)

Medicines: Daily: Aldactone 2xday: Prilosec, Diuril, Flovent, KCL 4xday: Erythromycin PRN: Albuterol, mylecon, tylenol

Notice how I didn't label anything Oral or Feeding? Yeah, that's because she's not doing it. She'll put her hands in her mouth, and she's much less sensitive in regards to her gag reflex, but still nothing by mouth. Another goal for her first birthday, I suppose.

And that's our girl. Medically speaking, of course.

Input vs Output

Charlotte is doing well with her continuous feeds.  She has a bit of a cold right now, (thank you hospital), but has been maintaining her sats and hasn't developed a fever.  We think that she's far enough into the cold that if it were to get worse, it would have done so by now, so we're hopeful that this will pass without too much intervention.

Her continuous feeds run from 11pm until about 9am, when she wakes up and plays.  We give her about a 2 hour break and then run her feeds during her nap, give her another 2 hour break and then start her feeds again, which run until 11 pm. 

What does this mean?

We're changing a lot of diapers, people.

A LOT.

Just sayin'.  This girl, dang.  And since she will probably grow up one day and read this, I'll leave it at that.  But seriously.  A LOT of diapers.

Have I mentioned we use cloth diapers?

Yeah, without a doubt, our nurses hate us.

:)