Clapping

ok,, I think I'm 99.9% convinced that Lyla is clapping her hands when we ask her to. This is amazing! It truly blows my mind. Every time this girl does something that seemed so "normal" with the other two, I am just overwhelmed with gratitude.
posted by sheena

Caught in the Act

It's been tricky trying to catch Lyla doing some of her new tricks but I was able to catch this one while I was in the kitchen and she and Parker were playing in the family room. It's the highest I've seen her get up and I wanted to shout from the rooftops after it happened. She gets up from the splits, which isn't ideal in the PT world but we are thrilled. We are working on getting her used to getting up from the side and getting down that way as well, but for now we are just happy that she can do this:

She doesn't stay up for very long and is dependent on her hands for balance, but it's so wonderful! She has also, a handful of times, gotten up on her knees and hands! Last month she wasn't able to push up on her hands; she only could get up on her elbows. It's exciting to see her in the crawling position! She does all kinds of movements with her body which are really cool to watch. Hopefully I can start catching her doing these things. Oh, and she's clapping her hands. I'm pretty sure it's unintentional, but it's super cute. She usually does some sort of tapping, mostly with her thumb. But this past week it's been her hands. Love it.

And this happened the other day

This never happened to Parker or Mabel

Apria Delivery

 This is what one month of formula looks like. The box on the right is a month of feeding pump bags and another box (not pictured) contains extension sets to the gtube and syringes.

1 Year Anniversry

Today marks one year since Lyla's open heart surgery. We were mostly comfortable going into the surgery since we already had this experience with Parker. We even read that she could be out within a week or two. We had learned a few things about Lyla from previous hospital stays, like that she likes to do things on her own time, so I was a little unbelieving that it would be a quick experience. The surgery itself went well. The surgeon was able to fix what he wanted to fix and she was sewn back up. But after only a few days, Lyla's heart wasn't doing too well and the ECMO (life support to pump and oxygenate Lyla's blood for her) was hooked up. We continued on a road full of bumps and detours with respiratory issues and feeding issues included. And after 3 months, were finally able to go home.
   We are so grateful to have that behind us. We felt like every time we got to take a step forward, we would then take two steps back. We finally feel like we are moving forward with Lyla's health, weight gain and development. It has been in true Lyla style, but we'll take it!

Lyla's First Haircut

At 14 months old, you would think Lyla is well overdue for a haircut. But because she hasn't been able to hold up her head for long periods of time, she's constantly rubbing her head on the floor. As a result the hair around the side of her head is very short (about 1" or less), and the hair on the top has grown incredibly long. Sheena cut off a total of 5 inches just to even it out with the other hair on her head.

Steps

Lyla is truly taking Lyla-steps. She progresses at the rate she wants, but she seems to be on a slow and steady increase. Her biggest concern right now is growth. She's had a very hard time keeping down her formula, so we've switched her to 'neocate' formula, but so far there's no noticeable difference other than maybe a very slight improvement. With our visit this week to her Infectious Disease doctor, it was concluded she does not have a reoccurring fever syndrome (which would be terrible if she did), but weight concerns will leave her with increased susceptibility going into the winter months.

This week she's been to the ID doctor, had a blood draw, and scheduled a consultation with a surgeon regarding a potential for Fundoplication surgery (the same surgeon who installed her g-tube).

Transferring Toys

This month Lyla has been transferring toys from one hand to another and then back again! It's been so amazing to watch her do this intentionally. She is rolling all over the place and doing really well keeping her head up. When on her belly she likes to lean onto one elbow and throw the other one back behind her. She is still spitting up, and we hope this ends soon! Her weight is teetering and 12lbs.