Saturday, November 8, 2014

22 Months!

I know, I'm overdue for Elsie's latest monthly update. Here you go!

We've had a busy month! It started out with a modified barium swallow study.

This was done to make sure that Elsie doesn't have any anatomical abnormalities with her swallow, and to make sure that she doesn't aspirate (which is when food goes into your lungs instead of down to your stomach). She had a swallow study done while she was still in the NICU, but our feeding therapist wanted to have a more recent one to look at. So we did. Same procedure as the first one: Elsie swallowed liquid barium while being x-rayed, and the radiologist and our SLP watched the x-rays to make sure everything was good. And it was good. Mostly. Ok, well, they had me giving her the barium in a cup so that they could watch the x-ray. I got a little nervous, because as you know, Elsie doesn't exactly love swallowing stuff, especially unfamiliar liquids or really anything besides water. So they told me to pour some of the barium into her mouth, I was kinda nervous, and dumped like half the cup in her mouth. Which, understandably surprised poor unsuspecting Elsie, who choked on the sudden influx of unexpected liquid in her mouth, and she aspirated. Oops. BUT she immediately coughed, cleared her airway, and the radiologist could see that it was kind of an accidental choking. Ahh, I'm such a good mom. So while she did technically aspirate, they didn't count that as an aspiration, but saw it as more of how she protected her airway and was able to immediately clear the liquid. And after that, Elsie was understandably angry, didn't want us to give her any more barium, and threw up the little bit that we did get in her stomach. So we watched on the x-ray as she threw up, then swallowed it back down. Then threw it up, and swallowed it back down. Repeat several times. And the conclusion was, Elsie's swallow is normal and she does not aspirate.

The next day, we had an appointment at the Neonatal Follow-Up Clinic. Elsie was tested for cognition, had her hearing and speech evaluated, talked with the nutritionist, and chatted with the Developmental Pediatrician. Long story short: Elsie is doing great. Her cognition is right where it should be for her age. Passed the hearing tests. Her expressive language (speaking) is mildly delayed. The nutritionist was pleased with the blended diet recipes that I brought in, and is going to do an in depth analysis to make sure that Elsie is getting all of the nutrients that she needs, or if there is anything we need to improve or change in her diet. The Developmental Ped was very happy with Elsie's progress in her motor skills. When we were first seen at the NFC one year ago, Elsie couldn't sit up, roll over, crawl, anything. She had mildly low muscle tone.  Now she is walking, learning to talk, gesturing, climbing, going up and down stairs, etc. She's made huge progress in her motor skills. It's nice to have this resource available to us to make sure that Elsie is progressing as she should.

In other unrelated news, it seems that Elsie has a sensitivity to dairy, specifically, to the milk protein casein. When we first started the blended diet back in February/March, we tried whole cow milk and Elsie got really constipated, and the eczema on her arms and legs got worse. So we switched to goat milk, which has been great, it's very easily digested and Elsie had no more problems with constipation or eczema. The only downside to the goat milk is that it's quite expensive. Well, about a month ago, I started adding cow milk to her blends again, to see if she had outgrown her previous sensitivity. Consequently, for the last few weeks, Elsie has had runny stools, more unexplained vomiting than normal, increased irritability, and increased nasal mucous in the mornings with no sign of an illness or teething. So we took out the cow milk and the goat milk, and switched to coconut milk and almond milk. She has been on the dairy-free blends for three days now and already her poop has solidified, and has only thrown up once, when she choked on a frito. This is a pretty definite indication that she was having problems with the dairy. Now we know, and we can easily adjust her food to be dairy-free. I did, however, have to dump out a whole week's worth of Elsie's food that was in our freezer that contained dairy, and that was pretty heartbreaking. But hopefully, now that we have fixed the dairy problem, Elsie can continue to gain weight with less digestive problems.

PS, sorry if you are disturbed by the multiple mentions on this post about poop. Obviously, if you have issues with poop and vomit, this probably isn't the right blog for you to be reading :) Because I talk about it all the time!

In more unrelated news, we had an awesome feeding therapy session this month wherein Elsie fed herself some chocolate pudding!! Here's what happened: So we've been working with Elsie on trying different liquids other than water. She enjoys drinking water. Not so much any other kind of liquid. Water is great, but it doesn't have any calories. On this particular day, we were trying to get Elsie to drink chocolate milk (of course now she'll have to switch to chocolate almond milk, ha ha), and she was doing fairly well. She was playing with a straw, and dipped the straw into the milk, and then we showed her to dip the milky straw into her mouth. We did that a few times, and then Helene grabbed a spoon and did the same thing; dipped the spoon into the chocolate milk and then into Elsie's mouth. For whatever reason, Elsie was surprisingly accepting of this milky spoon going into her mouth, which is something that she usually NEVER allows. She did this a few times. I couldn't believe my eyes. So while we were on a roll, Helene grabbed a chocolate pudding and snuck the spoon into the pudding and then into Elsie's mouth, and Elsie let her put it in!! Honestly, I know this doesn't seem like a big deal, but for Elsie, it was HUGE. We did that a few times and then Helene gave Elsie the spoon. There was much flinging of chocolate pudding all around the room, but there were multiple times where Elsie, completely on her own, dipped the spoon into the pudding and then brought it to her mouth. She only gagged once or twice, and no puking. Of course, the majority of the pudding was spit out after it entered her mouth, but she had to have swallowed some of it. Helene and I were both crying!! I never thought the day would come where Elsie would willingly feed herself, and especially with no throwing up. It.Was.Awesome.

So then of course I post all of Elsie's chocolatey-pudding-covered pictures on Facebook, and now everyone assumes that Elsie is completely eating on her own. Ohhh, how I wish that were the case :) Unfortunately, the chocolate pudding miracle has not been repeated. I don't know why. I don't know what magic it was that helped her to feel confident enough to do it at feeding therapy. We've tried to recreate the situation, but chocolate pudding is back to being the enemy. It's extremely frustrating. We are constantly taking one step forward, and three steps backwards. But I have faith that one day we will be taking giant leaps forward, and only baby steps backwards, and we won't even remember the days when we were struggling so hard.

Despite that lack of chocolate pudding eating, Elsie has made improvements with other foods. She often asks for tastes of foods that the rest of the family is eating, and will take tiny bites and then spit the food out. One time I was eating a granola bar with some peanut butter slathered on top, and Elsie asked for a taste. I offered it to her and she sucked off some peanut butter, and then one taste turned into several tastes! Again, she spit most of it out, but you know how peanut butter is so thick, she had to have processed quite a bit of it in her mouth and swallowed some of it down. I was so excited. She did the same thing a few days later with a piece of pizza; she would suck the sauce off my slice multiple times and actually spit out very little of it.This is huge progress! If only she were more consistent with her progress, then I'd be over the moon! But progress is progress, and I'll take it in any way.

Here's some pictures of the last month:

Tasting some KFC and loving it!

Mommy's chicken picatta with pasta is yummy!

Wonder Woman Elsie and Strawberry Shortcake Evje for Halloween

Trick or treating is hard work!

The amazing chocolate pudding moment.

Making a mess and eating some, too!


  1. I think she looks just like you did at her age in the crying Halloween picture!!

  2. Almond/coconut milk are a staple in our household. Yummy stuff! Love you bunches and bunches!

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  4. I was just thinking the other day how I hadn't seen their Halloween costumes. I'm impressed. I'm also glad that when you photograph her she is in the school attire for the appropriate school.