My blog took a long vacation for Memorial Day. Or maybe I just didn't feel up to writing. No matter, I have all kinds of things to say to make up for it; hopefully I don't leave too much out.
Friday was [so long ago!] somewhat busy, but not so much in a bad way. I needed to pick up The Boy's new medication. A liquid compound, which I really didn't want--I might have preferred pills to crush. More on that below. It wasn't ready. He had poo, so we went back home anyway. Musical Daddy called, asking me to please bring him a saxophone from home. Honestly I think he forgets more stuff now that he works so close to home, and even more now that I am available sometimes to bring it to him. Anyhow, I then went to the bank because my ATM card was missing and had been for awhile, but I was pretty sure that The Boy just took it out and tossed it somewhere. By that time, the medicine was ready. I didn't have the prescription card so I had to pay full price ($117--yikes!). Then to the center for a blood test. They wanted to check up on his potassium level. Of course they say to stick around and it would just be a minute, and it was closer to an hour and a half. Very annoying. I didn't want to leave, though, because if he were worse off blood-wise, he might have needed to be re-admitted. We didn't even unpack Musical Daddy's car, for that exact reason. Still pretty darned high, around the same as it had been, so we are discontinuing the Vasotec. Now, he is only on Cozaar and Hydralazine, and Cozaar is only once a day, and very easy to slip a spoon of it into his yogurt.
Hydralazine, on the other hand, is a medicine to be taken three times a day. That's the compounded liquid. 5 mL per dose. It smells and looks like orange soda. Probably tastes like it too. The Boy HATES it. He doesn't puke it up, at least he hasn't yet, but he is very unhappy. And I have to give it to him a bit at a time, partly just to be nice and partly because if I give him 1 mL at a time and he spits it back out at me, I know how much to refill the syringe. The nephrologist was pretty clear that we need to be consistent with him about it and eventually he'll get over it and just take the medicine. This morning, he seemed willing to take it, until he realized that it was the orange stuff and not his Zofran, which he always enjoys. So it's been fun, having to hold him reclined on my lap and torture him with this stuff. Not to mention that because it is bright orange (the pills are too, though), it can easily get on clothing. "You give your kid orange popsicles?" Yeah I wish.
Saturday was fine. We went to the diner in the morning and of course The Boy was a gentleman. We went to CostCo in the afternoon and bought all kinds of stuff. I got some calcium gummies for The Boy, but I will be asking his doctors if they are okay for him. He also got a UV filtering swimsuit and swim top. Without diaper in it, so I have to get a few swim dipes. I'll probably order that when I order Baby Bear's diaper covers.
Sunday was also a great day. Grocery store in the morning (left some food in my car---ew!) where he was once again a gentleman. We started to notice him getting a little more pale--likely he'll need blood tomorrow. After the grocery store, we had a snack and just hung out. Then, when Musical Daddy got home, we took a LONG family nap. By the time we woke up, to heck with lunch; it was almost dinnertime. We went to Applebee's, and The Boy was active and playful, wanting to walk around the restaurant and smile at everyone.
By the way, parents and future parents: walking around the restaurant with your kid? Good. Letting your kid run around bothering people? Bad.
Being Memorial Day today, there was a parade. We went to breakfast, and then Musical Daddy went off to meet the band. He doesn't do such a great job all the time at telling me when stuff is and what to do in the meantime, so after wandering around aimlessly, we went to the parking lot where the band was assembled and met up with Band Guy's wife and little son.
Her son is maybe 13 or 14 months old. He is walking but not talking. He still has lots of baby rolls. Very cute! She says that it's fun to watch The Boy, being so independent and inquisitive, and talking and figuring stuff out because that's what she has to look forward too.
Hey--I'm just glad that he has gotten there. And she knows that. I like her; I wish we'd get to hang out more but The Boy can't always socialize.
The Boy seemed interested in the parade, but he also seemed tired and hot, so we went back to the car. I went to the gas station and then took the long way around to meet Musical Daddy at the end. The Boy fell asleep probably around the time I pulled out of the parking lot to leave.
A detour was in place at the end of the parade, and somehow I found my way around to a spot where people were walking home. There were some kids, little ones, in four-wheelers. As in, on the streets, driving them, with their parents right there. These are TOYS, not roadworthy vehicles, and these are kids. And one of them almost hit me. The dad said "sorry." All I could do was yell out the window, "That's not safe!" while wanting to add a more colorful word at the end of the phrase, but not doing so because I didn't want to set a bad example for children present, especially my own. I mean seriously, how would the insurance work for an accident like that?
This afternoon we had another nice nap, even though The Boy was fighting it for awhile. Then we went down to the "town square" for an outdoor concert. Just a bunch of bands playing stuff. Mostly inoffensive. The Boy was having a WONDERFUL time!! We probably kept him out in the sun too long but it was already getting a little later, so we figured that it wasn't a big deal. Highlights from that excursion include The Boy drinking out of a water bottle REALLY well, stepping up onto the curb without holding on, figuring out how to do the buckles on the stroller, and eating pizza. He liked it, then he didn't for awhile, but since that was what Musical Daddy had brought us, that's what we ate. I'm glad he likes pizza even though it isn't something that we plan to give him very often, with the sodium and potassium being an issue.
Then again, I figure that if his meds keep things under control, he can have maybe one meal a day, when he isn't in the hospital, that isn't as good for him in that respect. Like mac and cheese, pizza, or even *gasp* avocado. The chicken fried rice that I made him is pretty good for him because I know what goes in it and I only use a bit of low-salt soy sauce. If the BP is still an issue, then of course no pizza or mac and cheese, and low-salt ketchup only, and no orange juice and no avocado. Musical Daddy swears up and down that he read something about sodium not having much of an effect on BP, but the nephrologists have likely never heard of such a thing.
After returning from the concert, I went out to get Rita's ice. The Boy loves Italian ice but has no taste for vanilla ice cream or custard. I just LOVE that custard. He was saying "Ice!" over and over again.
On our walk back (out of chronological order), we talked as we sometimes do about how strong our relationship is. How being at home with The Boy when he was an infant was so amazing for Musical Daddy, and how the cancer stuff has made us closer when many families might have been ripped apart. I said that being home with The Boy when he was a healthy little infant, with normal infant problems, was so helpful to him now that he has to deal with cancer stuff as well because he just knows The Boy, probably better than many fathers know their kids. Not an indictment of anyone's daddy; just an observation based on our circumstances.
We went on to talk about what a joy and a treasure The Boy is. And not just to us--he is delightful to everyone he meets. He is sweet and charming and intelligent and the smiles just melt people. I admit, sometimes I gloat to myself a bit: "yea, my kid has cancer, but he knows how to act in a restaurant."
Just having kids with few or no medical issues can be a major strain on a relationship. Never mind having a kid with as many issues as ours. But again, we are stronger and more united because of The Boy. We also have our families to thank for their support, because if we didn't have them, we'd probably be struggling a lot more to bear the burdens.
We REALLY enjoy these times like this weekend where we got to pretend that we were a normal family. Except of course for the really bald boy. But we just have so much fun and we treasure every moment that much more, because it is The Boy. Every chunk of happy family time that happens outside of the hospital, where we don't have cancer at the forefront, is worth so much to us.
Happy Memorial Day, to those of us on this side of the pond. If you can read this, thank a teacher. If you are reading it in English, thank a soldier.