Growing, growing, growing

 

 

 

For when your two-year-old must wear exactly what she wants to wear.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A sunhat, a purple shirt, blue jean shorts, hot pink leggings, and cheetah-print squeaky shoes.

I believe the picture above pretty much personifies Lily. She's a little crazy, a little bold, very feisty, and determined to live her life as best she can.

I got bad news a few nights ago when Lily's pulse-ox levels dropped to 90 and below when she was sleeping. We thought she'd been doing so well. Apparently, that is not the case. At least not at night.

Then, today, I take her to the hospital for her Nutritionist appointment. They are not happy because Lily lost 1/4 of a pound. Apparently if she'd been a healthy baby, they'd be perfectly happy with where she is right now, but because we had to do supplements and a high-calorie diet to get her to this point...removing the supplements and seeing a minor weight loss is enough to send them into a tizzy.

So, I got a lot of suggestions from the Nutritionist, and Lily will now be following (as much as possible) a diet made for children with Cystic Fibrosis. Apparently children with CF require a very high calorie diet too. If your child needs a high calorie diet, please check out this kid's health site. It is very awesome, and where my Nutritionist got the recipes that she gave me.

It was very frustrating, because it feels like her weight is a much larger issue than it needs to be. I am trying to understand - because I know it is a big issue to be addressed - but its just irritating. I have enough to worry about with Lily's health problems - and weight doesn't really seem like it needs to be one of them. I mean, she's in size 3T shirts, and 2T pants now! Size 5 shoe. She's 34.5 inches tall, and weighs 26 lb 13 oz. She's 50th percentile in weight for length. She's GOOD.

However, I will add it to my worry list, and do every thing I need to do to keep her weight up. Its not like I'd starve her anyways. It just means extra calories in everything.

Even though I think the dr was wrong about the impetigo, I will say that the ointment is REALLY helping Lily's feeding tube site. It is, however, doing nada for the spots on her bum.

Go figure.

Do you have a child with a terminal illness and/or special needs? Let me know your blog site, and we can follow eachother!