Wednesday, May 23, 2012

Day 55

Okay, so here we are, Day 55, and things are starting to get a little harder. Sarah has reinstated herself a new bedtime of midnight, and refuses to go to bed before then, and just when I had her back on schedule! It is also harder to re-instate her potty training this time around for some reason, and she has gotten waaaaay too comfortable just going right in the pull-up, so I have decided to just bite the bullet and put "big girl panties" on her while we're at home. More laundry for me, but something has to be done. In the meantime, I am a little overwhelmed with all of the excess cleaning and short-order cooking that has to be done, and Sarah just hasn't been herself lately so the tantrums are becoming increasingly frequent and even violent. I'm not exactly sure why, but my sweet little girl has taken to biting, hitting, and pinching me whenever I am within reach, whether she is upset at me or not. Playground rules would dictate that I hit her back, but being a mature adult and liking the fact that I'm not in jail, I can't do that. Besides, one of us has to have a mentality above four years old, and I'm guessing it's not going to be her, at least for another year. So, I guess that leaves me. The problem is, I have never encountered a child so stubborn in my life! I have read child-rearing books that tell me to either do what I'm already doing but that is not working, or tell me to do things that I can't do right now due to her illness, like let her run off her excess energy outside.

I think that may be a part of the problem. The one child-rearing book that makes a modicum of sense says that one needs to understand that it's rough being a toddler. Imagine being wrong all day long. You can't do anything right, even when you try. You're constantly being told no. That's pretty damn frustrating. Okay, point taken. The tantrums make a little more sense now from a toddler's perspective. Now, imagine that on top of being your average, run-of-the-mill toddler, you're a toddler with cancer. Not only are you doing everything wrong all day long, but you feel like crap on top of that. All day long, and you don't understand why. And as many times as the average toddler is being told no, you're being told no twice as much, for things that you know all of the other toddlers get to do! No, you can't go outside. No, we can't go to Disneyland right now, even though we have passes, and extra cash. No, you can't play with that kid, he's coughing. No, you can't take your mask off, because there might be pathogens on the freaking wind. No, you can't freaking eat, you have a procedure! WTF? And I expect my very intelligent four year old to just accept this. And I wonder what the hell her problem is. What is wrong with me?

Not to mention the fact that it's a hard transition from hospital to home, especially emotionally. Not judging the parents who have no choice, but I don't ever leave Sarah in the hospital. If I do have to leave for whatever reason, either my mom or my husband is there with her, I don't ever leave her alone. I am there with her twenty-four hours a day, and I don't ever leave her side. The bathroom is five steps from her bed, and I don't get to use it unless she's asleep, most days. My sole purpose for being in that hospital is to attend to her every need. Mommy doesn't have to clean, or cook, or do laundry. The room is small, and Sarah's toys are copious but limited, so clean-up is a lot less time consuming. Then we get to come home, and I am still alone all day with her, but there is no maid to clean every day, and it needs to be done every day, not just once a week. There is no "downstairs" to call when she wants to eat, Momma has to make it fresh, set it in front of her, clean and disinfect the kitchen immediately afterward. Floors need to be swept and mopped, vacuumed every day. Laundry is done as needed, but it piles up and being the only one home all day, I need to do that, too. And that's on the days that we stay home. Appointment days are even more hectic, because chores get put off until we get home. I have a lot more responsibilities and a lot less time to just sit and play with her. I honestly believe she is acting out.

So, I made a schedule, factoring in "Mommy and Me activities, as well as "free play" several times a day so that I have some time to get things done. So far, it's been two days, and I have stuck to maybe 50% of the schedule. And she has thrown 50% less tantrums. I am hoping that once we both fall more into a routine things will settle down some more. I am exhausted, and I am anxious to get this house and this life into some sort of order so that it can be less stressful for all of us. Who is this person I've become? I was never a "structure and schedules" kind of girl. I was a "see where the wind takes you" kind of girl. But I guess when the wind can kill your kid, that all kind of goes out the window.

Friday, May 18, 2012

Day 50...

Okay, so yes, it's been nearly two weeks since we were released from the hospital, and I have been MIA during that time. With good reason. Since the day we got home, it has been non-stop trying to put the house back in order, trying to keep up with the new responsibilities of Sarah's post-BMT cares, trying to complete Sarah's brand new Lalaloopsy room as she makes a constant mess behind me. I have been going to bed by midnight every night (which those of you who actually know me, know is unheard of where I am concerned, even when I had a day job) with my ankles swollen to the size of grapefruits and every muscle sore. After nearly two weeks of working on the house every day around Sarah's appointments, and fighting with her to clean up her own mess, the house is almost (almost!) back in order, and I think by tomorrow, her Lalaloopsy room will be worthy enough to photograph and post on facebook or in a blog. But not yet. It's pretty, and Sarah loves it, but it's not complete.

Tomorrow, I will do what I can, but I am going to try really hard not to tire myself out too badly, because my husband and I are supposed to go out to celebrate our 6th anniversary tomorrow night. Nothing fancy, just a drive-in movie (or possibly an actual movie, because I want to see The Hunger Games ever so badly) and a picnic, the real celebration is that we finally have some time together, to remember why we got married six years ago.

Today, we had labs and a doctor visit, then we went to visit Julian, but they were sleeping, so we visited Nurse Kara instead. She was happy to see Sarah, of course. It was good that they got to see each other, and that Sarah is doing well.

Today is Day 50, and Sarah is doing amazingly well. No vomiting, she is eating fairly well, and I am going against everything I know as a mother and I'm actually trying to make my daughter fat, because for the first three days she ate nothing but bacon and eggs three meals a day, and she dropped weight. So yeah, my daughter basically put herself on Atkins for three days, and the doctor said if we kept that up, she'd buy herself a ticket back to the OICU and an NG tube. So, I've been tempting her with carbs; we made mini corn muffins with bacon pieces mixed in; I made my special pancakes, french toast, and getting desperate because she went from 15.4 kilos Wednesday to 15.3 kilos today, I offered her potato tacos, which she happily accepted.

Now, for those of you not familiar with this Mexican delicacy, tacos de papa, or "potato tacos", are just that.  Tacos made out of potatoes instead of meat. Each family seems to have their own way to make these, but I dice and fry the potatoes, then put them into the tortillas and fry them as you normally would a regular hard-shell taco. Condiments are also a matter of taste. I eat mine with cheddar cheese and Tabasco sauce. Mike eats his with cheddar cheese and Tapatio. Mariah, cheddar cheese, Tapatio and ketchup (because she puts Tapatio and ketchup on everything), and Michael ate his with mustard, don't ask me why. The youngest two seem to be somewhat normal, and they eat theirs with just the cheese (although Sarah eats hers upside-down!). Disgustingly fattening, but so delicious! The kids love them, and they have sort of become a staple around here, although I haven't made them in a long time, since we've been in the hospital (duh) and Mariah can't eat them with her braces.

Like I said, I was getting desperate to keep this child fed, and she was denying everything I offered her because this week she has abandoned the bacon and eggs for her new food of choice, Popsicles. I offered her the potato tacos, and she accepted with enthusiasm, thank God. She ate two of them.

THEN, there was the hummus fiasco. Miss Boots got it into her head that she would like for me to make her favorite red pepper hummus at home, not buy it from the store. So I looked up a recipe online, and since it seemed easy enough (you dump everything in a blender, and you're done) and my mom was going to the store anyway, I agreed to make it.

I roasted the red bell pepper myself, gutted it, sliced it, and threw that in. Chickpeas, lemon juice, garlic, and this recipe called for cumin. Here's where things went awry. I dumped the cumin in, not thinking to look at it first. I blended all the ingredients and we created a gorgeous red-pepper hummus at the perfect temperature and consistency. It even tasted good. Until Sarah shouts "BUG!" at the top of her lungs, because she thinks that bugs constitute emergencies around here. I honestly think some times that if the house were on fire, she would tell me calmly and rationally, and wait until I was off the phone, but a bug is an emergency of epic proportions. The bug she was referring to was a tiny little... I don't know, some sort of teeny creepy crawly thing that looked like a seed of some sort that was crawling across the top of the cumin tin. I opened the tin and found a whole bunch of them in there. Obviously, I threw the tin out, then realized, that I had just dumped a whole bunch of cumin into the mixture of our perfect home-made hummus and there were God knows how many ground-up creepy crawlies in there! Luckily, my mom bought extra stuff in case Miss Boots wanted more, but only one red bell pepper, so there was enough stuff to make another batch of plain hummus. We made that, Sarah ate two bites, and the rest is residing in all it's probable deliciousness at the bottom of a trash bag.

She picked up her toys on her own, bugged me to get off the computer so we could pick out her pajamas, and got into bed after her bath with no kicking, screaming, biting, or fooling around. She has been blissfully asleep for the past hour.

Today is Day 50. We are halfway there, halfway to Day 100, which is when we are considered more or less "out of the woods" although we will always have to be on the lookout for graft-vs.-host and relapse. We are halfway there, and it passed so quickly! Now that things are more or less back in order, or as much as they can be with Miss Boots, I will try to write more frequently to keep you all more updated on how she is re-adjusting to life at home. For now, let's just say that we are both so happy to be home, even me, despite the lack of maid and room service! :)

Monday, May 7, 2012

Day 39...home? Not so much....

Okay, so we woke up this morning, thinking we were going to go home. Well, Sarah did. I was hoping and praying we were going to get to go home, because the doctor had said that if she ate well throughout the weekend. So Miss Boots had her heart set on going home today, and I warned her that we might not get to, but she got upset anyway. REALLY upset. Like cried for two hours, started yelling at me and her favorite day nurse, upset. My daughter is nothing if not STUBBORN, and she refused to be consoled no matter what we did. Finally, finally, Nurse Kara and I convinced her to eat, and she ate a decent enough amount (I hope) to please the doctor. After much pleading, cajoling, blatant force feeding and out and out bribery (one YouTube video for every bite), I got her to eat one french toast stick, two pieces of bacon, half a cup of yogurt, and half a box of apple juice.

When the doctor came in to speak with me earlier, I explained to him that she has been eating better (albeit not healthier) and that I don't think the NG tube is necessary just yet, and he says he is willing to take a chance and send her home tomorrow if she can eat, drink and take her medicine well today. This was not acceptable to Miss Bossy Boots. She wanted to go home today. Not tomorrow, TODAY.

She is going to do physical therapy right now, and she is helping Kara "hep-lock" her line so that she can be completely free of the machine (this means put Heparin in her line so that they can unhook her from the machine. Heparin is a blood thinner that keeps blood clots from forming in the line). Miss Boots is now on board and hoping to be able to go home today. We shall see...

Tuesday, May 1, 2012

Ten ways that I am different...

I recently got tagged in a blog from a very dear friend of mine to write a list of ten ways that I am different, a list of ten different things that set me apart from everyone else. I am a writer by nature, always have been, and I am very introspective and know myself well, so this challenge is right up my alley, although it has been awhile since I have attempted anything so literary and thoughtful. So, my interest piqued, I have accepted the challenge and now I have to filter through my sleep-deprived mind for ten things that make me utterly unique, ten things that are purely me. So here we go:

Ten Ways that I am different:

1. I am not a dog person.

I 'm not exactly sure that this is worthy of number one, exactly, but it was the first thing that came to mind. Most people seem to love dogs, and I don't know, perhaps it was the fact that I was bitten twice in my childhood by very large, very mean dogs, but I am just not a dog person. Small dogs tend to be yappy, needy and annoying (not all of them, but most of them) and large dogs smell and leave slobber and hair everywhere. Yuck. I will tolerate dogs alright, the smarter the better; we have even owned a few, and my mother owns one right now, but I have little patience for dogs. I have little patience for stupidity in general, and most dogs will stare at your finger when you point to something. Let the hate mail commence.

2. I love seafood.

Sure, lots of people love seafood, but I ridiculously love seafood. Shellfish especially. You have to respect a creature that makes you work for your meal, even in death.

3. I clean when I'm upset. Or sing. Or both.

I am not a neat freak by anyone's standards, so if you catch me cleaning something unnecessary, I'm probably pissed about something. I figure it's a good way to burn off energy and get things done at the same time. I have sung my whole life, and music is a big part of my life, but it is the most necessary when I'm upset.

4. I love independent films

Don't get me wrong, I love a good mainstream flick, too. But Jackass is not fine cinema. I love independent films because they unfold like novels and they give a very clear and in-depth look at the characters themselves, who they are as people in the world. That seems to be lacking in mainstream cinema for some reason. Call me crazy, but since your brain is more active when you're asleep than when you're watching something on screen, I respect a movie that makes you think.

5. I love TV.

I know, I know. TV is bad for you, and given what I just said about your brain being more active when you're asleep, I am a total hypocrite right now, but I love TV! Our big screen has a name, Stevie the TV. There is such a grand scope of things to watch, and it both holds up a mirror to reality and provides an escape from it at the same time. I think that as long as you  have a balance, just like everything else, there's nothing wrong with it. There are times where I enjoy the quiet as well, times where I just want silence, but for the most part, there is a television going in our house twenty-four hours a day.

6. I love trashy romance novels

Like literary candy, there is something to be said for a good, juicy novel that is all fluff and no substance. I do respect a good, cerebral literary work of genius, but sometimes, it's just as good and as necessary not to think. The predictable plot-lines and arbitrary characters are almost laughable at times, and it kind of makes me feel superior knowing that I could probably write a better novel. In my sleep. When my brain is more active than when I'm watching TV.

7. I love pretty clothes, but I hate dressing up.

I am an old-fashioned kind of girl. I love pretty clothes and shoes, I love the elegance and style and grace that the right outfit can lend to a woman. On most days, however, unless someone died, (since there is really no other occasion that would warrant me to dress up anymore), you will catch me in jeans, a t-shirt, a hoodie and Converse. And that's if we ran into each other on the street. At home, sweats and pj's. Given my current lifestyle, I'm sure it's no surprise to anyone that I prefer comfort in an outfit over style. But I've kind of always been this way. I like to look as cute as the next girl but much of my adult life has been centered around children, and heels and silk are not exactly conducive to running around after kids, especially when you're a cancer mom running back and forth between clinic and hospital.

8. My chips have to match my sandwich

I know, this is weird, and I am rarely this anal about anything, but there it is. It's not like I won't eat it if the chips don't match the sandwich, I just have a preference is all. For cold cut sandwiches, I prefer Lay's, plain if possible, but flavored will work. For turkey sandwiches I prefer a cheese type of chip, although the Lay's will work for that as well, and Doritos are reserved for pb&j.

9. For a Gemini, I am surprisingly steadfast

Geminis are known for their fluid nature, for being fickle, even. While I can see some of this in myself, and I am definitely open to change and trying new things, I am surprisingly predictable and steadfast. I always order the same thing at every restaurant. I read the same books over and over again. I pretty much listen to the same type of music that I have since high school, although my music taste is broad and eclectic. I am not a music snob. Music is music, non-music (ahem, death metal, electronica, "house") is just that. Annoying noise. No more musical than a car alarm going off. I cringe when my mother and husband want to rearrange the furniture every month, and I swear, one day, I am bolting everything to the floor. I like knowing where things are. I like knowing that in a world that is crazy and chaotic and ever-changing that some things are always the same, and never change. It is comforting to me.

10. I love food.

I think this may be one of the most defining things about me, and unless you've known me since birth, not too many people know this. It is definitely a defining thing about being a Gonzalez, at least our branch of the Gonzalez family. My father has six children living, and we are all the same in at least two things, which I am positive we get from him. We are all obsessive about our hair, and we all LOVE food. My father, on a day off, spends all day cooking, and force feeding everyone within a ten mile radius. And he's good at it. When Sarah won't eat, I take her to Apa's, and he gets her to eat all day long. Before bed, since we were small, we always ate a pan dulce and a glass of milk, or some other such delicacy. Now I can't sleep without a snack. If I'm fat, it's his fault! :)

Again, I am not a snob when it comes to food. I love vegetables and healthy food as much as I love it's disgustingly unhealthy counterparts. It either tastes good, or it doesn't, and this is my one criterion for what I eat. I don't worry about my weight. The doctor says that I am healthy, and the food is too good to give up. Have you seen what most skinny girls eat, at least the ones who have to work to be skinny? No, thank you. Pass the cheesecake, please. I ate strawberries dipped in chocolate pudding as a snack last night. You know you're jealous.

Okay, so that's it. I am almost positive that half of these are crap, and given more thought and a lot more sleep, I am sure that I could come up with some that are way better. We may have to revisit this later. But for now, I am proud of myself for completing the challenge, and I will keep thinking to come up with some better things that define me. If you have had more sleep and can think better than I can, and you've known me longer than 30 seconds (that should be number 11. I can't stand when people run their mouths when they have no idea what they're talking about), feel free to suggest some things I may have left out.