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!

Typical

Today was a Typical day. By that I mean this was one of those days where Lily's illness did not intrude at all. I felt like she was a Typical 2 year old. Annoying, bratty, loveable, smart-mouthed, affectionate...

When I went to pick her up today, she immediately ran towards me with a "That's mommy! Hi mommy!" When we were ready to go, she demanded "Pee-shur" (Pediasure) in her cup, and asked where daddy was.

By the time we were in the car, I'd already assured her four times that she could have Pediasure as soon as we got home, and yes she would see Daddy. Yes, she would see Posey...and yes, Mommy was driving Daddy's car.

When I took her to the store with me (after she graciously consented that we could 'see store' before we saw Daddy), it was an exercise in patience. When we stepped inside the first set of doors, and crossed to get a cart, the fan that they had running blew her hair back a bit. "Owwww..." There was no way it hurt. It took a second to figure out she was saying oww about. As soon as we got inside the store proper, it was "Can-nee? Can-nee?" Yes, Lily, we can get candy. In the candy aisle, when asked what candy she wanted to get - "Can-nee, take a bite!" Thank you, Lily, you were utterly unhelpful.

We got candy. She wanted a piece. I must have repeated fifteen times that she could have a piece as soon as we got home. We start to head towards the fruits and veg section. "Apples? Apple? Apple pie?" WTH? Where'd she get this apple pie thing from? And then it was back to wanting a piece of the candy again. I don't mind buying her candy. I probably give her more candy than I should. I dare anyone to say anything about it though. She's sick, so she can have candy if she freaking wants it. My child, my rules. Don't like it? There's a cliff. Go jump. Without a parachute.

Now, that's not to say I don't have any rules with her, or that she gets her way all the time. She most certainly does not. In fact, I'd say she only gets her way about half of the time.

We're in the check-out lane, and she's progressed to fussing about the candy. Cue me dramatically saying "Oh my god. End of the world. You aren't getting your candy right this second. Call children services, someone, I'm obviously neglecting my toddler!" .... Now I know where Lily gets her penchant for Drama. Me.  Distraction time - I give her my debit card and my store card to play with while I'm talking with the cashier. Lily stares at the debit card. "Money? P'astic?" Yes, Lily,  that's mommy's debit card.

We make it home. I ask her to help me carry some groceries in. Well, the groceries made it okay - just barely. The bag itself was almost ripped to shreds by the time she got it to the steps. When I went back for a second load, it was "Mommy - Come back here! NO MOMMY! NO! Come back here!" Trying to explain that I was just going for the rest of the groceries was an exercise in futility.

Fast forward a bit - I'm hot, sticky, and miserable. I ask Lily if she wants to take a bath with me. Cue Lily starting to strip right in the middle of the living room, and going for the stairs instantly. "Take a baff? Take a baff?" Yep, we'll take a bath right this second, I guess.

Lily hates for me to wash my hair. I don't quite understand why, but if I don't talk to her the entire time I'm washing my hair, reassuring her that I"m okay - she freaks out.

Dora? Dora? Doraboots? Doraboots and Sesame Street? Noodles?

Ok, night-night fan. Night-night mommy.

...and quiet falls.

I love days like today.

7 months later...

I didn't realize it had been so long since I had updated this...

Lily is doing great. She really is. For the first time since birth, she's on the growth chart. 43rd percentile, to be specific, for weight. 15th percentile for height. 85th percentile for head size. So, basically, she's short and has a huge head,but her weight is okay!

We're transitioning her from pediasure to regular whole-milk.

She is talking so much now. Her favorite phrase of the moment is "Come back here!" She hates it when you get more than a few feet away from her. She's also fond of saying "Wow, that was close!" She's obsessed with the camera now - I guess all my picture taking has rubbed off. Just recently she put a hat on her head and demanded that I 'take a pit-chur'.  So I did, and she happily cheesed at me.


She goes in for surgery on Tuesday. Its just to repair her belly button. Nothing major =) Just finally fixing the droopy belly button. To be honest, I"ll kind of miss it. Her belly button has character. It looks like a smile. However, its because of herniation, so it definitely needs to be fixed.

We are so lucky that Lily is doing well. So many other PH kids are not.

Angel - 3 years old - On day 13 of recovery after having open heart surgery. She's not doing well. If there isn't some major improvement soon, her parents might have to make a very hard decision.

Riley - 4 years old - is now going to be placed on the transplant list.

Please keep these two in your prayers.

In progress.

Ok, so I've currently got a call in to the Pulmonologist. Waiting for a second call back.

I noticed last night when Lily was laying down to have her diaper changed that the area around her mouth was blue.  She had been fine sitting up. I've noticed blue appearing more and more lately.

Some of the people I know have tried to tell me that blue is going to happen when people have the problem that Lily has. I'm not convinced. Turning blue is never normal, and Lily is turning blue more and more recently. Now, there's some question in my mind as to if I'm just *noticing* it more, but I don't necessarily think that's the case.

Anyways, so the pulmonologist's nurse just called me back, and asked if Lily has a SAT monitor.  Said that would be handy to have. So, I can see us getting one soon. Thank goodness for Medicaid. Anyways, the nurse said that he would probably want to see her, and we would see what we needed to do.

Sort of having flashbacks of the pulmonologist talking about having to go in and move the blood vessels off of Lily's bronchus. Blegh.

However, I think I will take a 'simple' problem like her bronchus being collapsed if it means her PH is not getting better. Its sort of the best of the worst scenario thing.

ARGH! Frick-a-frack-a-som-a-beech!

Anyways, the waiting game resumes again. I want the doctor to call me back like NOW. You know?

I'll edit this particular blog post as I find out more.

Christmas, Bible-Thumpers, and Non-Believers

I was thinking on this while driving to work this morning, and needed to get it out of my head...

Now, I call myself a Christian. I do this because I believe in God. I believe Jesus was the son of God. I believe He died to save us from our sins.

What I am NOT is a bible-thumper. I'm familiar with the Bible. I've read it cover to cover. However, its been a while since I've even opened one.  Its been several years since I've even been to church.

So, now that I've established that... let me just say...

Some people need to SHUT UP. I was reading various posts on Christmas, Jesus, etc...and non-believers were taking great joy in pointing out that December 25 was a pagan holiday long before Christ was 'supposedly' born. That we didn't know what we were talking about, etc. Of course, others were coming back at them and (I'll admit it, basically getting their butts handed to them) saying that yes, it was. That December 25 was the day he was born, and yadda yadda yadda.

My response to this is: I don't care what date he was born on. I'm celebrating his BIRTH. I'm not celebrating the day he was born. He could have been born on January 3rd for all I know, but, guess what? I'm going to celebrate his birth on December 25th. Why? Partly because that's how I was raised, but mostly because I realize that its the thought that counts.

Jesus could have been born on December 25th. Maybe God looked down, wanted to ease people's way into believing in him, and decided that that day would be the day Jesus was born. If you believe in the Bible, you believe in the Virgin birth. God knocked up a chick who had never had sex. You think he couldn't point a finger and go "Be born today" ??

On a side note, I can't believe I just put "God knocked up a chick". LOL! Well, you guys knew what I meant.

They talked about the pine tree, and how it had been a pagan symbol too. Something that people had gathered around in worship of life, or something like that. Well, gee, and the problem with us continuing to have a Christmas tree is.......?? I have a Christmas tree. I don't worshp it/ around it. Its a very pretty fake tree that I hang shiny baubles on so Lily can look and go "wow!" and it gives me a reason to torment the cat with the a water gun. To me, while the Christmas tree is a part of the holiday season, it is not something that I link with the birth of God's son. Its what we put gifts under, and hang shinies on. I celebrate Jesus' birth on Dec. 25th. I'm putting up the tree, however, for my personal pleasure. Not as on offering to Him.

For Him: I sing Carols like Silent Night, and I feel the joy and peace reverberate through me. For Him, I'll hold my daughter on my lap, and finally open the bible again. I'll read to her the story of Christ's birth. For Him, I'll give her snuggles, and thank Him for blessing me with her.

For me (and the family): I'll put up the shiny christmas tree. I'll buy presents to make people smile. I'll cook food so that we have a nice family dinner together.

There's a big difference between the stuff I'll do for Him and for me. I might do them on the same day, but there is still a big difference there.

And,you know what? I'll admit that maybe I'm doing it the wrong way. However, its the thought that counts.

I also, for the record, believe that we are in the End Times. Doesn't mean I'm going to shove it down your throat, but there it is.

So: Have yourselves a merry Christmas, everyone. To the people who take great joy in trying to rip other people's beliefs to shreds: Have yourself a merry Christmas, and grow the heck up. Asshats.

We all have our own beliefs. Deal with it. If you want to give yourself a happy right now, I'll give you some of my daughter's viagra. Same result, less annoyances to deal with.