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!

Diagnosis: Impetigo .. and a "my-mare"

So, I had to take Lily to the Pedi tonight to get her feeding tube site checked out. The doctor (who annoyed the crap out of me) looked at it for a moment, and then at some red spots on her bum, and pronounced it to be impetigo.

I think the doctor is full of crap. My understanding of impetigo is it is contagious, and it causes a bad rash. Lily has 4 spots on her bum, and her feeding tube site is irritated...and its been unchanging for the past week. That doesn't sound like a bad rash. Considering Kyle and I also change her diapers, and we haven't had any sign of it... I call bullshit. However, I will faithfully apply the ointment and see if it helps.

The doctor was this younger guy who had one of the most annoying voices, and looked like he didn't have 2 braincells to rub together. Plus, he kept directing his talk to Kyle. Excuse me? I'm the mother here! I'm the one talking to you.

Grrrr.

Lily woke up late last night, crying. When I went up to her and asked her what was wrong, she told me that she 'had a my-mare'.  She cuddled close to me for several minutes, and when I laid her back down, she asked (In the saddest possible voice) "Mommy lay down with Lily?" It came out "Mommy yay down wif Yi-Yee?" Needless to say, Mommy closed up the downstairs, and went back up to lay down with her. 

Would be Typical, but...

So the oxygen company had to come out to do a spot-check on Lily today. I thought that was all it was. I go home though, and there's this itty-bitty pulse ox that she has to wear tonight, all night. Have you ever tried to keep something on a child's hand during the night? HAH. Its too big and weirdly shaped on her finger for me to be able to tape it to her.

I came home from work, and she greeted me at the door. Unfortunately, I couldn't pick her up and give her loves because I was on my monthly phone call with the Accredo pharmacy to reorder her Tracleer. Even if you are having the best possible day, just having to order that medication can put you down in the dumps. The reps are really nice, but it just brings to mind her health problems all over again.

Then I learn that we have to do this pulse ox monitoring all night. Blah.

Anyways, we did go to Marino's Fish and Chips restaurant. Their french fries are freaking awesome! Lily absolutely loved them. It was so odd. She didn't want to sit on my lap like she normally does. She wanted her 'chur, please.' So, we put her in a high chair, and gave her a little bowl of noodles, along with some pieces of shrimp, french fries, etc. It was so weird to watch her successfully feeding herself. Just one of those moments when you look at your child and realize how quickly they are growing up

After dinner, when we came home, she wanted to go on a walk. With me. Not with daddy. With me. She made that VERY clear. Part way through the walk, she saw some gnats  flying around her, and absolutely freaked out. I had to pick her up, and every time I tried to put her down, she tried her best to climb right back up me. Needless to say, that walk didn't last very long. Which, actually, was a good thing, considering I didn't want to walk in the first place.

Also, and yeah - I'm biased, I had one of those moments where I looked at Lily and thought again how pretty she was. Now, I'm the first one to admit she was an ugly baby...and she still has her days where she looks like a little jewel-belly troll, but I'm fine with that. I really hope she turns out as pretty as I'm thinking she will.

Then again, its not like she has a huge chance of living to be old enough to worry about her looks anyways, so what does it matter?

Sorry, that was the grump in me.

She also tried to read the Sleep Book to us tonight. SO cute!