Monday, January 26, 2009
Not Me Monday!
It's that time again! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
Let me start by saying I altogether, absolutely did not find and thereafter pluck out a white eyebrow hair last week. No way. Not a chance. Not me!
Mark and I have had our queen-sized bed for over a year now, and it admittedly takes up a decent amount of space in our room. We have to proceed with caution around some of the corners because the footboard can attack at any given moment if you're not vigilant. Because I'm always so attentive as I'm making my way past the footboard, I did not run my thigh smack dab into the edge of the footboard (again) giving myself (yet another) nasty black and blue mark. No, that didn't happen, because, you see, I learn from my mistakes, and I'm always cautious!
Last weekend, Mark gave the sermon at a friend's church about some of the things our family went through after Lily and Leah were born. This was an important day, and everyone took care when getting ready, so we all looked nice (not that we don't always look nice for church, but you know what I mean). Anyway, because of this, Leah definitely did not spend the whole day wearing two left shoes! I did not look at her feet questioningly several times, wondering if her shoes were on the wrong feet, only to shrug it off when I realized that the other one looked fine. And, it certainly wouldn't take me until sometime much later in the afternoon to realize that she had on two left shoes (same shoe) in different sizes. Noooo, I'm so attentive I'd never allow that to happen.
Finally, I would never get so sick of the cat meowing at me (incessantly), trying to get me to feed her (when she already had food in her dish). I wouldn't just continue on with my business ignoring her attempts to pry me away from my kitchen duties. And, when she jumped up on the counter (where kitties do not belong) for the fifth time, I would never turn on the sink and spray her with the kitchen hose. Oh....wait....actually I would and did do that!
Wednesday, January 21, 2009
Wordless Wednesday (or not so wordless)
Today, for the first time, I heard Lily say, "Gimme five!" with her cute little voice. It may not seem like much, but when I reflect on her beginnings, it's pretty huge!
This is her the other day, pretending to be Leah's puppy (note the leash and wagging tongue).
Tuesday, January 20, 2009
One of my favorite things about homeschooling...?
...when Elise does her Math while sitting on my lap, glances at me with her smiling face, and signs "I love you." It doesn't get much better than that!
Monday, January 19, 2009
Not Me! Monday Updated
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
While Elise was sick with her high fever last week, I did not let the girls watch so much TV that I told them we had to take a TV vacation for a few days this week. Then I did not proceed to let them play a Curious George game on the computer, just so I could take a shower without having to worry about them arguing. It would not seem as though the girls have forgotten how to play with each other after a week of TV watching and sickness. Oh no! My little princesses always play together so sweetly.
While Elise was sick with her high fever last week, I did not let the girls watch so much TV that I told them we had to take a TV vacation for a few days this week. Then I did not proceed to let them play a Curious George game on the computer, just so I could take a shower without having to worry about them arguing. It would not seem as though the girls have forgotten how to play with each other after a week of TV watching and sickness. Oh no! My little princesses always play together so sweetly.
On the same token, there is just no way that I wore the same sweats for 3 days in a row because they were just so cozy, and if anyone tries to tell you differently....well, I'll deny it until I die! Honestly, the same sweats for 3 days? Now, that's just nasty! And the girls definitely did not spend the majority of last week in their jammies. So, no, I will not be renaming my blog to something like "Life in Pajamas" anytime soon!
Oh, and I certainly didn't put sweats on after my shower today (different ones). Nope, not me! Then, while enjoying blueberry pancakes with breakfast this morning, I did not accidentally get blueberry juice on my t-shirt, and instead of changing, just throw a hoodie on over the top. That would be so sloppy, and I would never be a part of anything that messy! And, just in case you're wondering, no a ponytail holder on the wrist is not my idea of accessorizing!
I am most definitely not so high maintenance that I can actually tell the difference between my pillow and Mark's. And, if he somehow winds up with my pillow during the night, I will not wake him up to make him switch back. I'm not that much of a princess! Really, I'm not!
It's totally not driving me nuts that we have mis-matching pillowcases on the bed right now. I'm not planning to tear the house apart later looking for the match either. Who me? Would I do that?
Lastly, I did not join Facebook this week, thereby involving myself in something that will take up even more of my computer time. I totally wouldn't do anything like that.
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I didn't neglect -er- forget to add this earlier either. I am always on top of things, and I have a memory like an elephant, whatever that means. Okay, so last week I did not tell Mark that we should maybe think about getting a Vita Mix after reading this post on this blog. Now, Mark has been talking to me about VitaMixes for the last, oh, probably about 6 years now, but I have not just ignored him, wrongly thinking that a VitaMix was "just a super expensive blender/juicer thingie." No, I never did that!
Wednesday, January 14, 2009
Happy Birthday Lily & Leah Part V
Happy 5th Birthday Lily & Leah!
This is the Dora mermaid cake the girls have been talking about for months! I enlisted Mark to help me with the fondant creatures. He made Dora, all of the plants, starfish, and the clam with the pearl. I made the octopus and tinted all of the icing and fondant. The cake itself is a white cake with fresh strawberry filling and strawberry almond buttercream. Accents are all homemade fondant. Unfortunately, Dora looks decidedly "caucasian" because I didn't have the right food coloring to tint her skin. I decided pale Dora would be better than jaundiced Dora, and the girls never even noticed.
Lily opening presents. I finally got smart and made them open one at a time so I could get better pictures!

Leah holding up her present from Elise. Elise really wanted to get her sisters a present, so she spent some of her own money to buy them each something special.

Elise really wanted to make special party hats for everyone. There was one for each of us, plus grandma and grandpa. And, why is it, that right before we're about to sing Happy Birthday both girls were in tears? Do you know? Me neither!

Happy Birthday Lily & Leah Part IV
About a month or so before Lily was decannulated, Leah broke her leg. We were all playing Ring-Around-the-Rosie, and when we all fell down, Leah started crying. When she stood up to attempt taking a step, she collapsed to the floor. At first, I couldn't figure out why she was crying so hard, as it really didn't look particularly painful. With that first step, I knew, and I remember telling Mark, "Oh my goodness. Leah broke her leg." I remember saying it so matter-of-fact. In my mind, I was thinking, "Oh puh-lease! You can't be serious! People don't break their legs playing Ring-Around-the-Rosie!" Um, well, actually they can. It was a stress fracture, so nothing too serious. A pink cast, and a few weeks to heal, and all was well again. My MIL had broken her foot earlier in the summer, so she and Leah got to be casted together. The worst part was that Leah had only started walking a couple of short months before this happened, and it took her a little while before she was feeling sure-footed again.
October 25, 2005, Lily finally got her trach out. We waited at the hospital for something like seven hours for the ENT to come over (he'd gotten stuck in a really long surgery). Finally, he told the nurses that we could just pull it. I removed her chains, and took out the trach. I'd held off on Lily's tube feeding as long as I thought I could (in order to avoid her throwing up all over), but I'd just started her feeding when the ENT called. Anyway, as I expected, Lily threw up everywhere and turned a scary shade of purple, but after suctioning her stoma and a few moments to settle, she had a fantastic night. And, the trach was HISTORY!
Here are a couple of the first pictures we took of her without her trach. Of course, her stoma is still open. The doctors recommend waiting for it to close on its own, which usually takes a few weeks. In about 6 weeks, they recommend scheduling surgical closure if it doesn't close on it's own.

We began really working on solid foods with Lily (not that we hadn't before, but it was still very hit or miss). After a couple of weeks, we had our last homecare shift. The nurse packed up many of our supplies to be donated to other patients from the nursing agency.
I had to get used to having the girls on my own all day for the first time. It took some tweaking, but I finally got Lily's neb/med schedule and feeding schedule worked out in a way that I felt I could manage with the other two girls. After the trach came out, Lily's projectile vomiting issues ceased (praise God!).
Still, eating was slow going. Some day were just better than others. She might eat pizza, but then gag on mac -n- cheese. You could just never tell what would go down.
This was the first year Lily actually got to be with extended family for Christmas. For many of my extended family, it was the first time they'd ever even seen her!
Playing in Grandpa & Grandma's basement. It was so nice being able to take a trip and not have to worry about Lily's trach collar circuit. The thing with the trach collar was that it provided heat and humidity, but water could collect in the tubing. If that water went up into her trach while she was sleeping, she would get all of that in her lungs. Sleep was not something I got very much of during those weekends away! Even the slightest water noise would wake me up, and I'd have to empty the tubing.

We scheduled and rescheduled Lily's trach stoma closure probably 10 or more times during December - March. Every time, right beforehand, she'd get sick. I remember apologizing to the ENT, telling him, I really wasn't letting Lily lick people's cups or anything.
She was hospitalized 3 times that winter. The first was a respiratory bug, but the second and third were for stomach stuff.
One day Lily started throwing up bile. After the first few times, I wrapped a clean diaper around her open g-tube, and let it drain out. This went on for most of the day. Nothing was staying down, so that evening we took Lily to the ER. I was very concerned that this was related to Lily's pre-existing gallstone. After an x-ray, the ER doctor said she thought Lily was just constipated. She gave Lily a bolus of fluids and an enema, and we went on our way. However, Lily wasn't better the next day. Even after 2 glycerine suppositories, Lily still hadn't pooped. Bile continued to leak from her g-tube into a diaper.
Back to the ER we went. The doctor came into see us (a different one) and tried to tell me Lily just had a virus. I looked at her and said, "This is not a virus, and I would really hate for you to miss something more serious because you're planning to pass it off as such." The radiologist agreed with me. He said that Lily's bowel gas pattern was unchanged from her previous film, and he suspected a partial bowel obstruction. So, Lily was admitted for IV fluids, and antibiotics. After a couple of days, it passed, and she was as good as new.
Two weeks later, same thing all over again, this time with respiratory stuff added in for fun. I could not figure out why Lily kept getting partial bowel obstructions. One of our old homecare nurses and I talked about it, and we finally figured out that Lily had been getting partially digested formula for so long that her body wasn't making all of the digestive enzymes it needed to in order to digest her food. Once I started giving her a glycerine suppository every few days (if she didn't poop on her own), we had no more issues. It took a few months to kind of clear things up, but now we don't have any of those problems.
Those are little toy curlers on their noses. I have no idea why they thought it would be fun to put them on their noses.


Our first family vacation since before Elise was born! We went up north and stayed in a cabin on the lake in a little resort town. It was beautiful! Mark's parents came with us.




In July, Lily was finally health and able to have her trach stoma closed. The difference it made was amazing! She started eating really well, and never looked back. Lily is still the least picky eater in our house. She loves spicy foods, eats vegetables like they're candy, and will take a bowl of soup over a piece of cake most any day.
We took them to the State Fair and let them get Fair do's. They were so stinking cute! And, no, I don't get the tongue thing!
Lily's first unsupported steps. This was taken about a month after her 3rd birthday, but it would be another 4-5 months before Lily was really walking on her own.

The girls have both come so far in five years, and both have overcome much. Lily still gets sick more easily than most kids, and she probably always will. She'll probably take Prevacid for life and always deal with some degree of asthma. But, she gets to grow up and live a relatively normal life. For that, we are blessed. That doesn't mean it's smooth sailing now, but we're so thankful that we even have them in our lives, considering how close we came to losing them.
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