How Old is Hallie?

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Friday, January 25, 2008

Still Growing Strong...

I've been a bad mama---not only are there no pictures this time around, but when I went to take a picture of Hallie who was looking super cute in Sharon's scooter helmet, I realized that I had let the battery on the camera run down. Sigh. Can't keep everything together!

Anyway, it appears that molar number four is about to make its appearance. Hallie was super fussy at the beginning of this week and would NOT under any circumstances go down to sleep at night, not even after her bath. This is pretty atypical for her, and unfortunately not only amounted to hours spent by Sharon trying to get the kiddo to calm down and take her bottle but also involved cleaning up the vomit after the bottle came right back up at her. Sheesh... We are hoping that we get some reprieve. I suspect that we might already have since today has been very calm, despite the RSV shots that Hallie just got. Hallie's been in a super mood today and has gone down for her nap twice without protest (both times in the stroller. Yes, it's a little weird to buckle your kid into the stroller for a nap, but heck if it works, I won't complain!) I have not had the chance to do a mouth sweep but will later on and see if I feel anything.

Yesterday, was my birthday and in addition to getting a very lovely gift from Sharon--a first edition of Mikhail Gorbachev's Perestroika autographed by both him and Raisa, his wife--I was also spared going to the FEES study (flexible endoscopic evaluation study) with Hallie by virtue of the fact that I had to go to work. It turns out that, even though it was not the most fun anyway ever had, Hallie did do fairly well. According to the ENT, while her left vocal cord is still paralyzed, the right is compensating well and things are virtually at midline. The reflux swelling is gone, and there was no notation of laryngomalacia. So there are no structural reasons why Hallie cannot swallow food and indeed at least limited indication that, in small controlled sips while awake, she can do okay on thin liquids. We'll still thicken the bottles and even the juice she gets from her straw cup somewhat, but we will work on experimenting with backing off of the thickener after our next Swallow Study in March. At least that will mean one major expense (for the Simply Thick, which I get off of Ebay) might go away.

The more troubling stuff that we're dealing with, however, is Hallie's speech. She won't mimic speech at all -- with a rare, rare exception of mimicking 'up' for me during and after her bath last night; of course I was thrilled but today she no longer does this -- and she has lost all of the 'words' she used to have and has not replaced them with new ones. It is possible that she is working on something else and hence not interested in speech, but what is interesting is how quickly she is picking up sign and how thrilled she is to do it. We are very happy about that, but worried about the speech. So Sharon talked with the excellent speech therapist at CHOP yesterday (who followed up with me today and will call again on she remembered us from the swallow study in August and not only remembered us, but the precise stuff Hallie was dealing with. In a word, she was awesome). Anyway, Staci, the therapist, is not an expert in Apraxia (and neither is Jenny, our also excellent ST through Early Intervention). But the symptoms Hallie is presenting with -- especially given how amazingly social and interactive Hallie is -- are worrisome to her. So we will fill out some paperwork and get ourselves an official evaluation and perhaps also visit neurology (there is a nagging sense we both have about Hallie's unilateral left IVH level 1, but even moreso, about the 'speck' of blood in the frontal lobe that no one could ever explain. I'm not sure how knowing about the IVH or other bleed would change things, but still we are curious. And once we get this evaluation, if it turns out that she is diagnosed with Apraxia, we can begin to get speech therapy that is tailored to that disorder---it is, from what I understand, very specific and very different than the sort of play therapy Hallie now gets. We hope that Jenny can learn some tricks for things to do with Hallie because we LOVE Jenny and Jenny loves Hallie. But we can also see if my insurance (evil thing that it is) or Sharon's (once it kicks in on March 1st...a month later than we thought) can cover additional private therapy. We'd do anything for this kid (and any kid, really) and want her to be as happy as she can be. Meanwhile, we are thrilled that she adores her Signing Time videos and are eager to learn this language with her. But someday, someday, we'd both love to hear 'mama' or some variation on that come out of our little girl's mouth...

To this end, and on the aforementioned topic of supplements, we've begun to add in some Omega 3-6-9s from Nordic Naturals that are supposed to be amazingly helpful for the speech for other kids with issues speaking. We know that a lot of the omega fatty acids are things that babies get from their moms via the placenta in the 3rd trimester and, since Hallie never had one of these, it's something that she missed out on. They cannot hurt, and if nothing else, they add in a few calories.

On the calorie front: we're not changing anything and are going to keep on keeping on. Hallie weighed in today at 24 lbs. 6 ounces, which is an 11 ounce gain since last month. This did not sound like a lot to me since she was 23 lbs 11 ounces last month and 24 lbs 2 weeks ago (on a different scale) but when the nurse charted Hallie for me, it turns out that she moved from the 41st percentile to the 42nd percentile for her ACTUAL age of 19 plus months. That's tremendous and we're not complaining. So, while we won't back off on the Karo syrup or the flaxseed oil or the added goat milk powder, we are still on track and if we have a bad day, it's a bad day and not the end of the world.

On that note, I gotta go get ready: Sharon, Aunt Renee and Aunt Kim and I are going to go out and celebrate my birthday tonight. Ami is going to babysit Hallie and we're going to have a great time! It's the first time that the birthday club has gotten together for a whole night out since June (we used to celebrate each of our big days this way).


Heidi said...


Second, would you let me know if they do diagnose her this early with apraxia? We've only seen three SLPs and none private (ECI, school) but they all said no one would diagnose before three so I'm curious. I'm going to give them a hard time if that wasn't true... :)

We had a lot of success with the picture exchange system with Mo - at a year they suggested we snap pictures of things, print & laminate them (lamination being my idea since I know how rough my kids are!) and hang them on the fridge. Friends, family, activities, foods, etc. As she got older her SLP gave us a card set that was drawings (so more abstract, I think she was close to 3 years) but it included feelings, colors, actions (going outside, brushing teeth) and we kept them in a binder for her to grab. Though we discovered you should NOT include pictures for cookie or ice cream cone because she seemed to believe giving us the card meant she always got what was on the card!

I'm going to check out the omega thing, too... thanks for sharing all you are learning!

Jennifer said...

Happy birthday abby - I hope you had/have a FABULOUS day! :-)

laurie said...

Happy belated Birthday Abby! I hope you have a lovely night out!

For what it's worth, I wanted to let you know that Emma did virtually the same thing re: 'losing' the words. We were on the (8 month long!) waitlist for SLP assessment/therapy at our local Children's Hospital at the time (some things take *forever* here in Canada!) and the fact that Emma seemed to be losing her (rather limited) vocabulary -- but picking up more signs -- prompted us to get her in private speech therapy.

It took several months, but Emma's speech eventually took off (perhaps at 26 months actual) with the therapy. She's still speech delayed, to be sure, and we're adding another session of SLP each week, but she is now a veritable 'chatterbox' :)

As Emma hasn't cooperated for her last 2 swallow studies, we're not sure if she is still aspirating on thin liquids, so we're continuing to add thickener. Our ENT suggested that we could try to gradually reduce the amount of thickener we add, but I'm hesitant to do anything that might tax her lungs over the winter in any way.

Thanks for the info. on Omegas... I'm definitely going to look into adding them to Emma's diet!