Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Tuesday, October 02, 2007

Baby Steps (literally)!

Emerson has been so much fun lately. She is just an absolute charmer and is constantly showing off her "bag of tricks" to anyone who is looking her way. We were at the doctor's office today and when the nurse walked in it was, "wave, wave, arms so big, mouth raspberries, cute sniff-face with the nose (for some reason she loves this one!), huge smile". The nurse was very nice and acted amused.

Yesterday, we visited her feed team and her calcium levels are still slightly above the normal range (ionized calcium 5.44 (4.5-5.3 normal) and calcium 10.7 (8.7-9.8 normal). What the heck?! Isn't she supposed to out grow this by 18 months?? She turns 20 months tomorrow. Anyway, her GI doc and team came up with a game plan, but did tell me that they have never had a child with hypercalcemia before. Me either! The new game plan is to cut back on her Calcilo/formula concoction to about 16 oz per day and introduce more developmentally appropriate (their words, not mine) liquids via sippy cup. These liquids have to be low calcium, high protein (10% or less calcium, 4g+ protein). So far I've found a certain brand soy milk that meets this criteria, some yogurt drinks and V8 splash. We'll see how she likes this. Today, I couldn't get her to drink the soy milk from the sippy cup, but she did take it from the bottle. One step at a time. Any other suggestions from moms who have dealt with the calcium issues would be greatly appreciated.

Here is a video clip of Emerson taking a couple baby steps. She is gaining confidence every day and you can see just how proud she is!


Blogger Kerry said...

How adorable she looks! Be careful - she may start running away from you!

Brady was last at a 10 calcium level (we do a mix of Calcilo and Enfamil w/Polycose for weight) in August but we are going to give him whole milk with three tablespoons heavy cream next week to start him on milk. He will be 2 on 10/13. We just did a calcium test but I haven't heard yet what it is. We also started giving him more yogurt. v8?? Did she like it? *shudder*

Yogurt drinks are a great idea, but I'm surprised it meets your criteria of calcium level. I would think they would be higher in calcium. Which drinks are they? Thanks for the info~

8:40 PM  
Blogger Laura said...

Michaela has been and still is, always borderline high/normal on the calcium levels. It just stays there no matter how we alter her diet.

Emerson is just so cute, she'll be running before you know it!

3:44 AM  
Blogger Heather said...

Emerson is adorable!! I know those first steps are a huge accomplishment. Very exciting.
I can't comment on the calcium levels. As horrible as Caleb's first years were, I am sure his Calcium was high, but we didn't know to check it.?? :( I have read that it can fluctuate throughout life though. it's probably something you will always have to keep an eye on.
Looks like you had a great time on vacation. Good luck figuring out the drinks.. Heather

5:50 AM  
Blogger Nancy said...

Oh wow, is she cute or what?

6:05 AM  
Blogger camille said...

YAAAAAAY!!! That's so exciting to see. She is adorable.

We only had Connor's calcium tested once, they were supposed to do it the last time we saw the geneticist, but she was running late (about an hour and a half behind schedule) so Connor was already done with being at the dr's office before she even showed up. Needless to say, it didn't happen last time. I have no idea where his levels are, but he's been doing fine with Stonyfield Organic drinkable yogurts. They are his morning snack, can go right in the sippy cup and he LOVES them. I hope the transition to the sippy cup goes smoothly. We worked on that for months with Connor and then finally, one day, it clicked. It was Feb 2nd, 2007. I remember because we had worked on it for so long and on Feb 1st he still wouldn't do it. And then click, it happened. That's just how it is with Connor. I'm learning A LOT about patience.

7:06 AM  
Blogger Tara said...

Emerson is a doll baby!!! Payton finally outgrew her calcium at 3 years. I didn't think we were ever going to get off of the calcilo :) She's still borderline high, but I don't restrict as much as I used to (we just did a test a week ago, but haven't heard any results yet). We basically were told not to give Payton any milk products (this was after she turned two because of not being on table foods, before then, she couldn't have any baby food product with over 4% calcium). I may have gotten too slack on all of it, but I even allow her to have ice cream when we have a rough day (doc appt). The other thing I've noticed is that when her calcium is high - she drinks a ton!! Like her body is trying to flush it. Hang in there - it took Payton a while to get her calcium levels lowered too.

9:28 AM  
Blogger Julie said...

Noah has had his calcium tested once. It was okay. He drinks pedia sure. I'm not sure what the calcium levels are in it. He has done good with the cup. He has been off the bottle since June. Trust me it was harder on me. We had to try several cups. She is so cute. I didn't realize her and Noah were so close in age. He will be 2 in January. He is trying so hard to walk but he gets his legs to far apart.

9:28 AM  
Blogger Nicole said...

Thanks so much for the info everyone. Sometimes I feel like I am breaking new ground with doctors so it is great to be able to bounce ideas.

Here are three products I found that meet our criteria. Emerson loves all three, but will only drink enough of the soy milk with the bottle. I will just have to bite the bullet soon and only give her a cup option.

Organic EdenSoy Original Soymilk - 10% calcium, 11g protein

V8 Splash Smoothies Strawberry Banana - 10% calcium, 3g protein

Dannon Light & Fit Smoothie Drink - 15% calcium (oops little higher), 5g protein

Laura, how interesting that Michaela's calcium levels were always high no matter what the diet. I will pass that info along to her docs because at this rate they will never let her try milk.

Kerry, let me know how it goes with trying whole milk with Brady. Maybe we should just be giving it a try as well.

11:01 AM  
Blogger Katie said...

Look at her go! Little princess, she has grown up so much lately - well since last photo anyways!
She will be running before you know it!

10:38 PM  
Blogger Lisa R said...

no steps for us yet although she is all over the place....I am not sure how we got Tate on a sippy cup but she is all about it now only a bottle at night....I can nopt wait to home and watch the video...

10:19 AM  
Blogger Teresa & Shawn said...

Yea, Emerson! How cute is she?? She reminds me so much of Clare (who also does the sniff-nose face constantly - I think they know it's so adorable!).

11:37 AM  
Blogger Every minute counts.... said...

She is so cute and getting so big!!! We have never had the calcium issues so I can't be of any help there sorry...


1:00 PM  
Blogger Amy said...

Avery's calcium just stays in the high range like Emerson's, however her doctors (pdia., endo. and neph.) don't seem to feel it is an issue. I try to give her a lot of water throughout the day just in case, and give her whatever she will eat! Great steps!

8:14 AM  
Blogger Aspen said...

That's incredible! She is doing so great!

1:45 PM  

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