Wednesday, September 30, 2009

Very easy

I didn't think to ask for any help today with The Boy and his blood. Fortunately, it ended up being easy enough. My eyelids are light tight, as I was wondering about that in my last post. So we all napped for an hour and a half. By the time Meatball woke up, there was only an hour or so left on the infusion.


Grandpa may come in the morning in Friday before his water aerobics class. Surprisingly, he is one of the only gentlemen there. Hopefully The Boy can hold onto his hemoglobin for two days.

As usual

Blood today. What else is new?

We had a few intense moments just now of both children crying. Now, both are sleeping. Meatball is strapped into the Ergo carrier and asleep on me; The Boy is next to me, holding my arm.

Never a blankie, this one. He loves people.

We missed the La Leche League picnic. I was hoping that he would be fine but no such luck. A whole week since his last blood transfusion. Maybe he will be okay on Friday. He seemed so healthy yesterday. With healthy being relative.

I did not yet ask what his white count is. I am hoping to take the boys to some marching band in Saturday. I have not yet seen Musical Daddy's band, and I am curious.

Tomorrow, I'm not sure yet what we will be doing. Tonight, however, I am excited about cooking a nice piece of salmon. The Boy likes it out of the can, so hopefully he will like it fresh.

I'm going to check my eyelids for holes.

Tuesday, September 29, 2009


In a strange turn of events, both children went to bed early this evening. I might regret sitting around on the computer later when I don't get to clean the kitchen, but I am in need of some decompressing. For me, that means my 'puter time.

I should mention that I really don't get much of it. I used to, it's true--The Boy would frequently take his midday nap on my lap, and I'd be able to catch up on everything at that point. But now, I can occasionally pick up a quick email check for 2 minutes but sitting down to write in the blog is a bit more challenging.

So today's entry will likely contain a little bit of everything.

I have decided to make the Shema a part of The Boy's nighttime routine. "Shema" means "hear" (as the imperative, a command). The first line of the prayer, translated, is "Hear, O Israel, The Almighty is G-d, The Almighty is One." It goes on to say that "You shall love G-d with all your heart, all your soul, and all your might" and discusses how the person should remember and share these words, including to teach them diligently to their children.

I was thinking yesterday about my religious responsibilities to my children, as their mother. Right now, my obligation to them is mostly to attend to their physical needs, because they are little, but if I can bring them to a religious service, it's a bonus. More to the point, my own religious obligations and needs must take a backseat to those of my small children, until such time as they are more independent and can allow me the freedom to worship.

I'm not an exceptionally observant Jew. My husband is not Jewish. Most of my friends are not Jewish. My community, while we have plenty of Jewish families, is not necessarily a Jewish community. I belong to a congregation that is much less traditional than the one in which I grew up, and while I rather disliked most of my social experiences in synagogue when I was growing up, religiously it worked for me. I started attending Reform Chavurah in college, and I have affiliated myself as Reform almost by default since then. That said, we keep a Kosher home, I could speak and read pretty good Hebrew at one point, and I am well-versed in Jewish rituals. We light candles on Friday nights, and I bless my children. When my family and I get together for Jewish holidays, it is always a lovely experience (at least from the standpoint of the actual religious celebrations, family discord notwithstanding). I like the fact that Judaism isn't just something that you experience once a week if you do happen to drag your behind to services--there are several little things that happen every day, even in my relatively secular life. Regardless of my affiliation.

I want my children to feel a part of everything, so I bring them to Jewish places/events, such as to my aunt's house, when we can. Would love to go for Sukkot, which is a fun holiday for the kids (it's the one with the little houses) but The Boy is likely not going to have good counts, so travelling and being around a bunch of people just won't work.

We should be done with this chemo stuff soon enough and then we can get more religiously involved. In our congregation, with the family, and in a few more years, I look forward to being able to volunteer for Chai Lifeline.

Anyhow, today had some real winner moments after which I felt the need to punctuate with an interjection of "super-fun." I should also mention that I am going to try harder to take better care with my children and be more understanding and patient. I do a good job, but I do get frustrated. And I want to try and say nice things about them. But sometimes the things that aren't nice are the things from which we learn. And the things that really bring on the larfs. Later. After it's over.

Physical therapy today was, once again, poorly timed. I asked her if it would be possible to find a better time than 12:45 for his sessions, because most of the time, he either needs to be woken from his nap, needs a nap and hasn't gotten one yet, needs to eat, needs to eat get the picture. She'll see. Today's session consisted of an hour-long temper tantrum punctuated by brief moments of physical activity, and those only because we tried to force it.

The Boy is getting that nasty bum rash that he gets post-chemo. He needs naked time, although I thought that perhaps putting him in his little underpants would do the trick. Problem is, he will pee or poop in those without giving it a second thought. He does get uncomfortable after it happens, which may be a sick and twisted way to potty train, but with an infant in the house I just can't abide the mess because I have to clean it up right away. I don't know though--I do have to clean up diapers anyway, so what's wiping pee off the floor too? I just worry that he'll pee through his underpants onto the floor and then slip and hurt himself. I don't think that we have any clean ones left after this evening.

By the way--three hours today of having on no pants. Completely dry. Including while he slept. I put him in a diaper right before PT and he pees, AND leaks.

He peed on the chair. It was due for a cleaning anyway, so I have my Woolite Heavy Traffic rug cleaner going to work on it. This is one of those things where you spray it on, and when it dries, you vacuum it off. Works pretty darned well. I just have to run the vacuum without waking the children.

Meatball seemed to be back to his old shenanigans with the nursing. He fusses, he pulls off for no reason, and I never know when he is done. I need to watch my diet--no dairy pretty much AT ALL for at least another month. I had made the mistake of thinking that because he was getting better that I could have the occasional bagel with veggie cream cheese. No such luck.

Good stuff--The Boy ate quite a bit today. Big bowl of Rice Chex for breakfast, a snack of salmon (yes, salmon) and several low-salt Triscuits for brunch, a late lunch of chicken and grapes, and nothing but noodles for dinner, followed by a small bowl of Rice Chex.

Successful grocery store trip today. The Boy helped pick out food while Meatball rode along contentedly in the ErgoBaby carrier. By the way--loving it! I'm so thrilled that he fits in it now.

More good stuff--I finally got to the cleaners today to drop off Musical Daddy's shirts.

And, as I had previously indicated, the children went to bed early. I have already heard several protests from The Boy. Not sure what's wrong with him but I'm hoping that he gets over it and continues to sleep.

Meatball is really doing is darndest to screw with my head in terms of our more attached way of raising our kids. While I have always thought that putting the kid down to cry after trying everything to comfort him is the wrong thing to do, and surely there must be something else to try so that the child isn't unduly upset, I can see that Meatball rather prefers it. If he just wants to be put down to go to sleep for awhile, trying to comfort him to sleep usually fails miserably and he continues to fight and protest. Sometimes he does fall asleep in my arms or on my shoulder, but it's rare. Whereas The Boy has always been a super-snuggler. Putting Meatball to bed at night sometimes requires that I leave him to cry if he has not fallen asleep nursing. It takes no longer than 10 minutes for him to sleep, generally much less. And a lot of times, it is just at the point where I say, "I should get him and try to nurse/hug/comfort some more" that he quiets down and sleeps for a few hours.

The Boy has awakened and is crying. I'm still not sure if he really needs anything or if he is just mad that I'm not there. Unfortunately, I have a funny feeling that he has pooped yet again and I have to go in there and aggravate his poor little bum.

Sunday, September 27, 2009

Dagnabit, I want my spiritual healing!

Consider this my New Year's post.

The Boy did not make it out in time for Kol Nidrei. The doctor was prepared to let him take his last two Mesna doses orally, but insurance doesn't cover it. Major downer.

So I brought Meatball to shul. I went early so I'd have time to settle him down. He did. I was determined to be there for at least some of the service. For awhile anyway. I got to hear Kol Nidrei and get through to Shema, but then he was up, so I fed him.

I should mention that I tried to feed him before the service but he would have none of it. So when he is fussy and refusing to feed, he generally needs a short rest and will eat nicely after that. Generally the short rest can be brought on by a walk. He ges as many of those as we can give him.

I missed Yom Kippur the past two years for reasons relating to The Boy. When he was 3 weeks old, I spent Kol Nidrei in the emergency room with him. Last year, we were in the hospital, having been admitted for fever, back when we thought hospital stays were a big deal. And, more to the point, before we knew that the hospital would become our second home , like it or not.

I wish I could spend a little more time in shul. It just isn't a good idea to bring The Boy unless he is healthy.

No take-out for this one...

As comfy as I am nursing in public, Meatball just doesn't like to nurse in other locations! He likes the easy chair and the bed. Anything else is a struggle. Difficult, when we spend so much time at the hospital. Not surprisingly, Friday's restful day found him rarely fussy until the very end of the day. At the hospital, he is taken on at least three walks just to get him out and calm him down. After he really hadn't eaten enough, and then he comes back asleep. No wonder I got mastitis.

He is going to have to adjust.

And soon because it drives me bananas.

This child is determined to make me work like mad just to nurse him.

I get it--somehow being an advocate for human milk means that I need to be punished. But isn't it enough?

Come on, what next?

Saturday, September 26, 2009

Back to it

I arrived at the hospital a bit after 11 to resume primary caregiver responsibility. I may or may not really be feeling well enough but the Advil helps the fever and the antibiotic is, hopefully, doing its job. I am recovering well enough from the boobie flu. Mastitis, really. Which is not contagious. And not swine flu.

So. The Boy ate a nice amount of chicken from my lunch and then got mad when there was none left. Being that it was almost lunchtime, I thought that his food would arrive soon and he'd have more chicken. They forgot his tray. Naturally, by the time it arrived, he was over wanting chicken, had moved onto challah and honey, and didn't even touch the rice, much less anything else on the tray. We'll save it for later.

We have great helpers today. A friend from choir came in the morning, and my friend who was with us on Wednesday is here again for a few hours. At 2 or so, a friend from my shul is coming. Then in the evening, the music director and music librarian from St. Peters are going to be here. All lovely people.

We are watching Winnie The Pooh. Meatball is out on a walk with my friend. Daddy should be here around 3.

Friday, September 25, 2009

I love my husband

He is bringing me a sandwich.

Thursday, September 24, 2009

Boy Therapy too

Cure for mastitis: stay in bed. Apply boy frequently. Play and snuggle. I can do that.

Will see how I feel in the morning. Ibuprofen brought the fever down.

Still more things I don't need

I think I am sick. I hope that it is "only" mastitis. Meatball has been pretty reasonable this afternoon, just sleeping and nursing, but it seems as though he is getting a bit antsy to go out, which I'm not sure I feel up to.

I'm by myself at home. At least I "only" have to take care of Meatball, as The Boy is in for chemo and being cared for by Grandma. Who leaves tomorrow, before noon.

I hope that whatever this is, I can sleep it off. Because I have to be in the hospital most of the weekend.

Wednesday, September 23, 2009

We're in!

Getting blood first, then heading upstairs. When we start out here, things move faster. Our nurse is getting the chemo here and will send it up with us. Even the blood got here faster.

We are in room 4221. One of my friends has been here and helped set up while Grandpa watched The Boy. Meatball has been a good boy in the ErgoBaby carrier (which reminds me, I should review it) for awhile, although the morning was spent raging. Out for a walk and right to sleep, was the solution there.

So...we are doing our thing. And with a little help from our friends, we will be fine.

Tuesday, September 22, 2009


I'm not one who is big on scheduling things like baby feedings and sleeping times, because I figure they will eat when they are hungry and sleep when they are tired, when they are little.

At some point, they "get" that nighttime is for sleeping, when it is dark, and daytime is for playing. Then they actually can physically make it through the night without needing to eat.

That's an issue I'm not looking to push with Meatball. Particularly since he is pretty reasonable about going back to sleep most of the time.

I have to say, though, there are a few things that have been quite regular for a little while, for which I am grateful. One is that I can put him to bed sometime between 7:15 and 7:45 and he will generally give me a few hours (half of which are used for nighttime rituals for The Boy, preceded of course by playtime). I nurse him and turn on his music, and put him in the bassinet and that's that. If I am by myself in the evening, generally we are watching something with the little red guy in it, so that I can keep The Boy in one place.

The other, which actually didn't happen today and consequently threw off bedtime a bit for him, is his late afternoon nap. This one begins at about 4PM and ends whenever my fork hits my plate at dinnertime.

This afternoon was odd anyway, although I'm not complaining in the slightest. A friend from my shul came over for a bit to help out, and she helped by taking the children out for a walk in the stroller. I was able to do diaper laundry, change the sheets in our room and The Boy's room, and (most importantly) straighten up in the guest room. The guest room has been a dumping ground for excess crap in our lives, and I put at least some of it in better places. I bought a new mattress pad for the bed in there and will be making that bed as soon as the pad comes out of the dryer. I vacuumed the available floor space in that room and The Boy's room. I just feel better knowing that there is one less space in our house that is a total mess.

Odd, because in addition to not being big on schedules, I've also not been very big on organization either. It has served me well in that I am very good at finding things, wherever they may have ended up, because often they are not in their proper places and historically most things of mine are not. My memory is excellent when it comes to situational information, so I can not only find something but also tell you how it got there in the first place. My mother is Mommy Fix-All-Better because she is simply the greatest; my "superpower" is being able to find things, so I'm "Mommy-Find-It."

But I digress.

The odd thing was that Meatball didn't take his late afternoon nap and so was tired at 6:30, which took me awhile to figure out and I was wondering why he was being so fussy while nursing. I put him in bed and even though he cried for a few minutes, he slept for over an hour. The Boy and I had dinner together and did some playing. Meatball woke up right as I was changing a soupy-poopy diaper. Fun.

The physical therapist came while I was changing The Boy earlier in the day, and my friend came as I was changing my shirt. Fortunately, people know to be patient when you have tiny kids.

I am now further convinced that whatever "it" is, Meatball is well-served when he cries "it" out for a few minutes before going to sleep. Not that I won't go to him when I know that he needs me, and I'm certainly not trying to sleep-train him this young, but when he is tired, frequently he does not want to be held or nursed or rocked. I try it. But then when I leave him in his bed, or the middle of our bed, or when we're in the car and he is fussy, he calms down and sleeps after a few minutes pretty much all the time. I mentioned, tomorrow is a possible admission. If we are admitted, I'll need LOTS of help on Saturday. Anyone up for it?

The Numbers Game

Tomorrow we'll check those platelets again. We would have otherwise been checking them on Thursday but in an effort to be out of the hospital for Yom Kippur, we'll try for Wednesday.

If we don't make it Wednesday then...I'm not sure if we'll try for Friday or if we'll just wait until after the holiday. If we wait until after the holiday, then we will likely get Grandma for most of the hospitalization. If not, and we do check in tomorrow, we get her only for Wednesday and Thursday, and in the morning on Friday.

Thanks in advance to my buddy from the mommy group who will be coming in tomorrow to help out, regardless of admission or not, because even if he isn't being admitted, he probably needs blood. Which takes awhile.

Seems like he gets a transfusion once a week. If you aren't giving blood, please do. Oh, and if you can come watch the kids so that I can give blood, that would also be cool.

Hm...I think that The Boy was about to fall asleep on the carpet.

This morning, I put a bag on The Boy to collect pee. Musical Daddy was about to leave the house, told me that The Boy had pooped and apologized for leaving me with it. I called for help. I felt bad about making him late (or on time, instead of early) but I needed help with this one. The pee bag was full and the poo was everywhere. I cleaned up The Boy and had Daddy take care of the diaper. Then I grabbed the pee bag. Can't get any poo on there, because that would contaminate the sample. It still spilled but in order to avoid contamination, I snipped the corner and poured it right into the cup. Mommy 1, Poopies 0.

I did offer him the option of peeing in a cup but of course he declined.

And just now, he removed his diaper, which was wet. I guess that's good.

Why am I pushing the potty training thing? I guess I just want him to be aware that there is the option considering that I know he can hold his pee for a long time. Not sure about the poo, especially since sometimes he gets nasty runs from medications or from what he eats or doesn't eat. Even so...I just want him to be able to pee in a cup.

He did earn 1 jellybean for sitting on the potty. Of course he was throwing a fit about it and I had put him on there but I wanted him to see that if he did sit there with no diaper, he would be rewarded.

We had a reasonably successful trip to Target this morning. Except for the part where I stupidly thought that The Boy could walk with me. He decided that he wanted to sit down and fitfitfit in the middle of the parking lot. Little pain. Next time, no free walking unless I have the cart or stroller right there for easy conveyance, as I generally wear Meatball in the sling or, now, in the Ergo.

Hooray, by the way, that the ErgoBaby carrier works for Meatball now! The recommendation is really 4-6 months to start them in it but he is 16 pounds, which is above the lower limit for weight, and he will sit in there comfortably. And often fall asleep. I can sometimes nurse him in there but not any more easily than anything else. I just don't think that the hands-free nursing is really going to work for me while Meatball is an infant. Disappointing.

I hear a screaming Meatball...gotta run...

Monday, September 21, 2009

The time that doesn't exist

I'd apologize to my readers for not posting in awhile all know what it's like, so I'll just say that I didn't post in awhile and now I'll make up for it.

Preferably quickly, as who knows when Meatball will be waking up.

Today is 3 weeks from the start of The Boy's last chemo, but once again, a prolonged dosing of Neupogen prevents us from starting on time. We are checking counts again on Wednesday, so that we can be done before Yom Kippur. If we don't get admitted then, I'm not sure when we will. Maybe Friday, or maybe they'll wait until next week, depending on the counts, of course.

It's the first one during the schoolyear, and during marching season, and if we start this week, I only get Mommy for a few days, so I could REALLY use a lot of help in the way of person-power at the hospital.

We spent part of Rosh Hashanah at my aunt Marian's house. It was SUCH a good time. I like going to family gatherings because, for right now, my children are the only little ones of this generation in the country (although there are 7 others in Israel). They get lots of attention. Everyone wants to fuss over them and play with them. And I get to relax.

The food was spectacular. The company was wonderful. My children were well-behaved, although Friday night was tricky, because we arrived around Meatball's bedtime, yet we couldn't actually put him to bed, so he was unhappy, and was passed around to try to quiet him.

If I have the time, I'll try to do a "new years" post..but I don't really see that happening.

Time to feed the Meatball!

Oh, by the way, I put him on the scale today. In clothes and diaper, he is 16 pounds 10 ounces. At 2.5 months old.

Tuesday, September 15, 2009

Big day today

Lots of stuff...met the movers to get the piano; came back to the house and watched them move it in. The Boy was excited!

Walked to CVS and the cleaners, to pick up things for Musical Daddy.

Tried napping, or rather, tried getting The Boy to nap. He watched TV quietly. Slept a bit.

PT wasn't great today, since he had no nap. We ate too. Musical Daddy was home for lunch.

Tried the nap again. Kinda.

We went to pick up the violin, and since both boys were asleep, I drove around the long way to end up at Musical Daddy's rehearsal. We had to stop for a quick feeding for Meatball.

The Boy had a good time running around and listening to the counting. Drill rehearsal isn't fun, but he was still into it.

When we got home, he had chicken. And apples and honey. And chicken and honey...

After dinner, we played with the violin for the first time. He was thrilled! Needs to learn to be gentle, but unlike with most toddlers, I feel as though I can teach him that, as he is still a pretty gentle kid.

In other news, he did tell me that he had gone poo today. I offered him a jellybean to sit on the potty after his bath. He was slightly interested, but no dice.

We shall see about bed tonight.

Meatball was pretty pleasant and cooperative all day, and not much else to say about him other than he is cute.

Great new stuff!!

Last night was much better in Boy-land. He did gripe for quite awhile going to bed and again at 1AM or so, but we are already seeing marked improvement.

Today we are getting a piano! Someone is giving it away and their attitude is, if you take it off our property, you're welcome to it. My aunt found us a piano mover, and we are going to get it this morning.

Also, The Boy is getting a violin! Obviously he can't do much with it yet but he will be thrilled to have it. We are paying $20 for it. It's really more the right size for him at age 4 or 5, but it isn't too overwhelming for him now.

It's the morning, and The Boy just woke up, so we'll be doing breakfast.

Monday, September 14, 2009

More on the bedtime wars

This post makes no sense without the previous one, so read that one first.

Musical Daddy and I were quite frustrated by last night's proceedings. I even closed the door, and relented at his suggestion. The gate is fine. In my frustration I started to complain about The Boy's behavior in general, and that since I would like to assume that he will make it out okay after all this cancer stuff, I would rather not have a spoiled kid who doesn't know how to listen. Really, he is just a two year old. I need to reread Love and Logic to remind myself of ways to deal with his two-ness. But anyhow, Musical Daddy suggested that I talk to the social worker at the center this morning, which is what I did.

As far as the bedtime thing, she says that we are fine, particularly since he really doesn't get hysterical. She also thinks that our approach, which does include calming him a bit before putting him back in bed, is very appropriate for him. The nurse also added, and the social worker agreed, that we need to be consistent. We, the parents, need to stick to the same plan.

I feel better about this now, going through this when he is really at an age to understand the process and also to receive the praise for doing well. When he was younger, it would have been hours of hysterical crying, not the complaining that he currently does.

But he is ready. I know he is.

Potty training will be our next heartache. This kid is stubborn, tell ya what. 2 hours with no pants and ge didn't go at all.

Peeing on the floor would be an improvement.

The Bedtime Wars

No posts in a few days--too tired.

Or busy.

Anyhow, working backwards, the first time I put The Boy to sleep in his bed in the latest configuration, he slept until 6AM in there. Naturally, we hadn't had a repeat of that.

A visit from my mother when The Boy wasn't in the hospital meant that every night when he woke up, she'd go in there and end up snoozing with him. Does keep him in his bed; doesn't really help when she isn't there.

Lately, we've been lucky if we can get an hour of The Boy in his own bed before he's up. And while our bedtime routine would have him asleep by the time I left the room, any subsequent wakings meant that he just wouldn't stay asleep in his bed. No matter how long we stayed in there, no matter how asleep we thought he was.

I read "The No Cry Sleep Solution for Toddlers and Preschoolers" when I was actually looking for the original, designed for infants, as an answer to Ferber and Weissbluth and the other "cry-it-out" guys. I had been looking for solutions for Meatball. Somehow, he has become much less of a problem--I don't care if he wakes up to eat but I wanted him to go to sleep in his bassinet and I wanted him to go back to sleep after night feedings. Both of which are happening. But I digress.

So the only reason why it is called the "No Cry" sleep solution is that it doesn't so much use crying as the way to get things accomplished or as a way to measure the activity before actual sleeping. It doesn't mean that there won't be crying. Because believe me there is. The main point made in the book is that children need to feel secure in going to bed and a good bedtime, and a good routine, will help that. Parents should not have to apologize for comforting their children and easing their transition into more mature sleeping habits, and the book even has suggestions for getting kids to sleep better while still keeping them in the parent's bed.

The Boy just can't stay with us at night anymore, though, because he wakes Meatball, and he takes up too much space, and I don't have room in there to feed Meatball carefully like I am supposed to.

Saturday night, we put him to bed and he kept bouncing out, so we'd bounce him back in. Finally, I put up the gate. He was NOT happy. And neither were we. What parent wants to hear her child crying at the gate? He fell asleep on the floor by the gate that night. He got up a few hours later and ended up with us anyway.

Last night, we put him to bed with his full routine and stories and songs and whatnot, and the bouncing was abated by my sitting outside the door. That's progress because usually he'd chase me when I try to leave.

But the bouncing still continued. It was after 10 when he went to his bed...on his own. He was up two more times in the middle of the night, and we had to stand our ground. Finally when he got up a bit before 6, we brought him in and said it was morning.

More on this subject to follow...but I think we might actually be getting this done.

Friday, September 11, 2009

Seriously, why? A car story.

My feeling about the boys being easy to manage when they are in the stroller gave me the idea to go to the grocery store right after The Boy had his finger stick. That way, less waiting, less chasing, and a better chance for Meatball to catch some zzzzzz's. What happened instead was the car not starting. Yes, the minivan we just bought. Click click click.

I called AAA and also tried the dealer, thinking that they screwed us, but I must have dialed the "we're just going to keep bouncing your call and not actually going to say more than a sentence to you." heck with that. AAA operator says that the hospital will only meet drivers at the main entrance, where I wasn't. I was in the east lot. With two small kids. I took the stroller to the main lobby and resorted to playing an Elmo movie on the iPod so that The Boy, being without white cells, would not run around the place. Remember that hospitals have sick people in them. I waited and waited...finally I called AAA and they said that they were there and waiting and left a message on my phone. Which doesn't work in that part of the hospital. At this point I was ready to flip a fit, Boy-style, but being a grownup I went to talk to a security guard. Makes me really glad that I know all of them.

He called another guy, located the AAA guy, and I told him where to go. He was annoyed on my behalf at the hospital policy. I walked the kids back to the center, where the nurses had agreed to watch them. Fortunately it was a slow day. They also asked me if they could access his port while I was gone, to which I agreed because The Boy is SO good about all the medical stuff. No issue; didn't even cry! Grandpa arrived around this time and watched my car as it had to run for awhile. Then he watched The Boy while the platelets ran and I took Meatball to the grocery store. To buy meat. Mmmmmm--meat.

Snaps to Grandpa for his timing.

Home before 3. Major bum rash for The Boy. Probably poo in his sleep. The worst. Hard to prevent that.

I made a tasty dinner. The Boy started napping right before it, which means he will be up late. Grumble.

Thursday, September 10, 2009

Long day of ????

Third full day, plus, with just me and the boys. I am liking the morning walk, particularly if it is followed by sleeping for Meatball, downstairs playing for The Boy, and practice time for me.

Today Musical Daddy left at 7:15 and returns after 10. He finally got his schedule for marching band, no hurry or anything, and Tuesdays and many Thursdays look just like this. Fun. Especially when I can't really go places. I am limited to the stroller walks, where I can guarantee that The Boy won't touch anything. I could try the grocery store if I have a very small order, and keep the children in the stroller. Perhaps if white counts are still low but other counts are ok and he doesn't need anything, we'll hit the supermarket after his blood draw. Heck, I might just do that anyway and make it something of a habit, so that I can get Meatball outta there for awhile.

The Boy fell asleep in my lap along with Meatball, who then woke right up. I was able to get out of the chair, with Meatball, and leave The Boy asleep. I'm going to wake him for dinner though. Actually I might have to wake him with Neupogen shot, because I have no one to help me.

I have to say, I definitely see how kids aged 1 and over can really benefit from a group child care experience. Where the one caring for the children isn't also trying to do household chores and other assorted stuff. My blog friend Nancy, who was working until recently, had always said that she loved coming home from work and just being Mommy, and she loved being Nancy at work.


Wednesday, September 9, 2009


Super time at orchestra rehearsal. I love to play. Also, it is my primary time away from the kids. That, and therapy. And I think that orchestra is better for me.

I am determined that The Boy will stay one more stretch in his own bed. So we have to keep bouncing him back to his room. I just hope that Meatball doesn't wake up before I can leave The Boy.

Congrats to my husband on his first evening with both kids. Check his blog if interested.

And congrats to Meatball for drinking his bottle of mommy milk. He hadn't had a bottle since before his procedure. He is actually asleep and has been so for awhile. I pumped when I got home, to replace what Meatball drank.

So tired...want to sleep...


The Boy got blood and so has energy. No white cells, so we can't actually do anything. Grumble.

We did go for a walk. Mostly for Meatball's sake.

I don't know how anyone gets anything done with two little kids in the house.

Tuesday, September 8, 2009

So smart!

One of our bedtime books is "Zin Zin Zin! A Violin!" It is a book that adds an instrument each page.

I am pleased to report that The Boy can identify the clarinet, trumpet, trombone, flute, violin, horn, and harp. Not bad for a two year old.

I also think that he has figured out the bedtime routine and is trying to manipulate it.

THAT'S not supposed to happen

The IV is not supposed to leak blood. Really.

But we are all better. We should be out of here in an hour or so.

Thanks to Grandpa for spending the day and helping!!

Monday, September 7, 2009

Pillow Talk

Here is The Boy's bedtime routine, which seems to be working, at least kinda..

Teeth. Jammies/night diaper. In bed. Read 2 books. Turn off the light. Talk about our day. Sing polecats and lullabies.

The only thing missing is being able to leave with him being awake, but he was asleep by the end of the last song (there are 6, and they are short).

Meatball...well, he is another matter. In the evening, when he seems tired and it is soon enough after a feeding, I put him in pajamas, turn on his lullabies, and put him in bed. Frequently he doesn't cry, although he did a bit tonight. We have a "just a few minutes" policy with him, although he really does scream bloody murder over nothing.

While I am not so into "cry it out" per se, I wonder if maybe Meatball has a bit of "it" to cry about for a bit at night. He certainly gets the love and snuggles and attention all day and at night when he needs to eat, and I don't think he finds sleeping in his little bed to be so objectionable. He just complains on general principle.

And he has been in bed asleep since a bit after 7. I got to do the bedtime thing with The Boy with no problem.

Well, except that the first part went teeth, jammies, Boy wants a rice cake, teeth again, THEN the rest of the bedtime stuff.

Now we are watching Entourage. Laundry is all done, kitchen is good, diaper bag packed for tomorrow.

Big day--Musical Daddy goes back to work tomorrow. This is the Big Show. I can do it...

Don't forget to read my previous post about Gold Ribbon.

Gold ribbons

September is Childhood Cancer Awareness Month. I'm aware, and I'm sure if you read this you are too.

We need more research and solutions. Cancer patients of all ages deserve better than chemotherapy.

My son did five months of chemo that didn't even keep the cancer from growing back. From this chemo he ended up with nerve damage, causing him to be delayed in his gross motor development. At this point I think he has healed as well as he can from that and now it is just a matter of catching up and being out of the hospital to do so. He also risked heart damage from another chemo drug. His heart seems okay, thankfully, but many other kids who receive this drug cannot say the same.

His current regimen includes one drug that increases his risk of leukemia, one drug that can cause bladder bleeding (and was derived from mustard gas), and one that damages the kidney (remember that he only has one and not even a whole one) and can also cause hearing loss which is not much fun for anyone much less the child of musicians.

Kidney damage is no joke. He is on a low sodium and low potassium diet, which means a lot of foods that he might otherwise enjoy are off limits. Like no ketchup. He takes three blood pressure meds and a bicarbonate supplement as a result of the kidney damage.

I packed away clothes and brought out others and realized that my 2-year-old has not grown. Pretty sad. We knew that he'd slow down in his growth for the duration of his treatment, but the realityy really hit when I realized that we didn't need to buy him ANYTHING for Fall. He is likely below average in height, which is another tough pill to swallow when you are two parents who are six feet and above.

I'm not telling you this because I want sympathy, per se. It isn't just that this is what weighs on my mind when other parents just have to think about playdates and kid classes and potty training. I want to share this because I hope that, after reading this and the stories of other families whose children are fighting cancer, you will agree that these kids deserve better.

Please share this with everyone you know, to increase awareness. Please take up this cause for my little guy and the others.

Sunday, September 6, 2009

More on improving eating

Meatball is still getting used to his new mouth configuration. So he is still eating too fast and gulping air but at least now he doesn't cause me as much injury. And he has many feedings that are pleasant and productive,

We'll get there.

Meanwhile, The Boy is regaining his appetite, which always makes us feel better.

Saturday, September 5, 2009

Improving the eating

It is amazing how quickly the awesome eating habits can be undone by a party, leftovers, the hospital and associated hurrying (and more leftovers), and another party.

I had mentioned before that I liked how I felt while on the anti-thrush regime. While I don't wish to go that far necessarily, I want to take some more responsibility for my eating and not consume everything I see. I got an app for my iPod to keep track of food I eat. When you know you will be writing it down, you tend to be more careful.

I don't want to rush the weight loss process--I just want better.

Soon enough

It seems as though the new thing for The Boy is for them to hydrate him for 12 hours after chemo. He was done yesterday and theoretically could have come home late last night, but staying over ended up being easier because then the nurse would take care of the diapers. You know, the every two hour stuff. Because it would be just my luck to have The Boy being changed on the odd numbers and Meatball waking to eat on the evens.

Mostly, it seemed to be an uneventful chemo stay. My mother was here until yesterday, and with her was a friend, who had been her roomie in college. She was great! She came to help and boy, did she. The thing she did the most was walk Meatball around the neighborhood multiple times a day. She said that when her kids were babies, she would wear out multiple strollers. Additionally, she helped with laundry and cleaning and allowed me the time to organize all the boys' clothing by taking Meatball out.

It was nice to have two experienced parents, in my mother and her friend, who are more or less on the same page as us. You know--babies need Mom's milk, babies need kisses, toddlers are not evil or bad when they display contrary behavior, and while sometimes we might not know it, there is always a reason why children are crying and something should be done to help, be it offering food/nursing on cue, giving hugs, or just going on a walk.

So with two of Grandma here, more or less, care of Meatball was easier, care of The Boy was easier, Daddy got a lot done on his thesis, and we even went on a dinner date!

Meatball is still getting used to his "new" tongue. I am still sore because I have not healed yet, but it is much better.

Tired...going to catch some zzzzz's before the rest of the family returns.

Friday, September 4, 2009

Quick Fix!!

So far so good--tongue tie is clipped and I look forward to saying "good riddance" to the gaping flesh wounds. And nursing my little Meatball will be a pleasant experience for the first time...ever.


So here we are, waiting for the tongue tie procedure.

On Monday, when we first learned of it, one of The Boy's nurses saw the baby and said, "he's such a big meatball!" So now, instead of Tiny Guy or Baby Bear, I think my new blog name for my 2nd son is Meatball. We'll see if it sticks.

Meatball had his 2 month checkup and shots. He did not yet get the rotavirus vax because the doc was worried about a live virus and The Boy. He is 14 pounds 4.5 ounces and 24 inches tall. 75th percentile in height and 90th in weight. Again--meatball.