The Feisty Lily

The Feisty Lily

Thursday, August 18, 2011

The Better Parent... is not me.

My boyfriend is, hands down, the better parent to Lily.

Its disturbing to realize. I'm her mom. I should be the best parent for her. Right? But, I'm not. Hey, at least I can admit it.

I am wrapped up in Lily's medical problems. I think more about them, sometimes, than I think about her. I'm constantly thinking about it, researching it. I'm the one, during her bad spells, that is on the phone with the doctors, coordinating things and getting test results.

I am pretty much constantly tired, so its hard for me to get up the energy to even want to do anything with Lily. (I do force myself to take her to the park and such, though.) I do not like people, in general, so if we are at the playground and have it to ourselves...then another group come along, I will immediately pack Lily up to head home. This has already caused Lily some issues in associating with groups of kids. (She prefers to sit while the others play, and play by herself while the others are doing something else.)

I lose my temper with her much more easily than he does. However, as an aside to that, Lily listens to me much better than she listens to him.

He lays down with her every night to get her to sleep. I'm of the mind we should just say goodnight, give her sippy, close the door and let her fall asleep on her own. (Now, I'm not totally heartless, if she's still crying after 10 minutes we can try something else...)

He helps her eat during dinner. I'm content just to give her the plate and let her go at it any way she wants to go at it.

I guess my only plusses as a parent are that I'm utterly unselfconscious about doing silly things with Lily. Go out and play in the puddles for a half-hour? Sure! Dance w/ her around the living room floor for 10 minutes straight? Of course! (Now, he tries to dance with her, but Lily won't let him...) Play in the faucet at the back of the house for 15 minutes on a hot day? Coming right up!

And yet.... for all his pros to my cons... Lily is more attached to me. That makes me feel guilty as hell sometimes. I'm the one Lily turns to when she gets a boo-boo. I'm the one Lily asks to carry her. I'm the one Lily goes to for snuggles when she's not feeling well. I'm the one who Lily steals food from.

I don't know what to think anymore.

Wednesday, August 17, 2011

I love my daughter. I do not like my two-year old.

I love Lily to pieces. She's the light of my life. She's also annoying the crap out of me today.

I'm just ill-tempered, and I don't really know why. She's not even being that bad, she's just being...annoying.

"Did you hear me?"
"Yes, baby, I heard you."
"Did you hear me, mommy? Did you hear me?"
"Yes, Lils. I heard you."
"Did you hear me?"

At this point, I crouch down in front of her, make eye contact and say "Yes, baby. I heard you. What do you want?"

It stops. Thank God.

Its a half hour until her bedtime, and I can't wait. I seriously need the little booger to go to sleep. I hate being in a bad mood with her, especially when I know its not her fault. I've forced myself to take her to the park the past couple days, even though its one of the very last things on my list of things I feel like doing.

I had called Dahlberg yesterday to set up Lily's new babysitter on the busroute. The driver said it wouldn't be a problem. He called me back today and said he wouldn't be able to do it. That it was outside his route. Like...2 minutes outside.

So, I called Dahlberg. Talked with the administrator, who said to give her a minute. She called back a couple hours later, and said she'd begged the bus driver.  She'd told him that if begging didn't work, she'd send him a sad-faced picture of Lily, and he would have no choice but to give in. He gave in. Haha!

So, Lily will go to Dahlberg for another year. The administrator said that they wanted Lily to continue with them, that she was such a joy - and with her fragile health, she needed them too. It was nice to hear a 'principal' actually caring about a student.

Feeding Dora

Cuteness abounds!
(quick post)

This morning, while Kyle was feeding Lily, he was also required to feed the Dora the Explorer doll, and a little kangaroo stuffie. Repeatedly. While Lily made nomming sounds to accompany the feeding.

Apparently he also had to hold Dora in his lap. -snickers-

Things daddies do in the morning to get their rugrats to eat.


Wow, I don't know what's gotten into Lily, but she's became a bottomless pit lately. Eating everything in sight.

Monday, August 15, 2011

LI'l Bee

Lily is due home from her grandparents house today. I'm eager to see the little minx, even though I know after about an hour, I'll be ready to send her back. Haha. Bad mommy, I know.

I'm very grateful that my boyfriend's parents are willing to take her for a weekend a month, sometimes more if we need it. Its nice to know we have time to get things done. See, Lily is still very attached to me. VERY attached. I recently had a friend over this weekend, Abby (with Noah and Micah), and watching Noah and how good he was at entertaining himself made me realize how clingy that Lily is. Its not necessarily a bad thing, but a pain in the butt when you are trying to get things done.

Noah will take his mom's iphone and play games on it. He'll run around like a heathen, completely ignoring us. Lily....well, Lily needs mommy or daddy. Pretty constantly. She's getting better at it when it comes to watching Dora, but that's about it. She rarely plays on her own, she needs us to play with her. When she's eating, most mealtimes end with pleas for hugs and washing her hands. She doesn't like to go to bed on her own. We generally only get little 5 minute snatches throughout the day of Lily not needing us for something. Luckily, we both love playing with her.

We're hopefully moving this weekend, and getting a dog not long after that. I'm looking forward to having the dog. I think a dog is vastly different from a cat, and Lily will hopefully fall in love with it and be able to spend more time with it and leaving us to get things done.

We're looking at getting a boxer pup. It seems to be one of the best breeds for children. We're going to do everything possible to make sure Lily and the dog develop a strong bond. We already know we're going to end up taking the dog out on like six walks a day. At my boyfriend's house, she LOVES taking their dog on a walk.

I think a dog will be a welcome part of the family very easily. Not to mention I just plain out like dogs better. I love Posey, but I don't like him very much half the time! Haha.

I am so, so blessed that Lily has found that magic number with her medicine. That she's doing so much better. I love that I can 'race' her for a half block or so. That, even though it drives me nuts at times, she's always wanting to go to the playground. That she wants to be outside and playing. (Yay for a fenced in backyard where mommy can sit on the porch occasionally and let Lily run around safely in the grass!) She already has a tricycle. We're looking to get her a little slide because she adores the slides at the playgrounds. She'll have a big room to herself that we can set up to be the ultimate indoor play area. Not to mention the three season room on the back where she can play even when its raining.

My daughter is the light of my life, and I'm so glad things seem to be going in a direction where I can truly give her a good life. =)

Friday, August 12, 2011

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!

Tuesday, August 9, 2011

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.


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. 

Monday, August 8, 2011

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!