Saturday, October 31, 2009

stupid Halloween

Usually I like Halloween. It's fun.

Today, since I know that The Boy has a lousy white count, we aren't doing anything. I forgot it was Halloween until at 2:10 the doorbell rang and woke me from a much-needed nap. And woke Meatball who had been carrying on for much of the morning.

I apologized to the trick-or-treaters and decided to put up a sign that says "NO CANDY. Sick child with no immunity. Sorry. Happy Halloween." I'm sure that the doorbell will still ring five times and furthermore I wouldn't be surprised if our house got egged because I'm sure that there's just NO excuse for being home and not giving out candy.

I just didn't think of it.

And maybe that makes me self-involved but I don't particularly care. I'm not really sure that having a bunch of kids come to my door is a great thing for The Boy. Likely it wouldn't harm him but in my nasty selfishness I just don't feel like putting up with the constant reminders that my kid can't participate.


Jesus dinner

In a brilliant stroke of "what is taking up space in my freezer that I can cook for dinner," I served pollock (a white fish, kind of like cod), one of those challah loaves that you defrost all day and then bake, and green beans.

Loaves and fishes. Impressive that I got the Jesus joke.

Thursday, October 29, 2009

Pray for Riley

Some background: Riley was diagnosed with Wilms Tumor at age six. She relapsed after treatment and was put on the Stratum-C protocol, which is the same one that The Boy is on. The REALLY long one.

Riley completed the protocol. It took about two years. She continued to go to school (or receive instruction), play soccer, and, amazingly enough, maintain her very strong faith. She was accepted into the gifted program at the end of her third grade year.

Her end-of-treatment scans revealed a spot. It was more cancer. They removed it and the next set of scans revealed another tumor.

Please pray for her. She is such a strong person and her parents are so loving and full of faith and hope. Also, I kept saying that Riley was doing well, so surely The Boy will as well...hopefully they will figure out a way to heal Riley.

Riley's Army is the organization that her parents started--go look that up.

Pray for all of our little ones, but right now Riley needs a little extra.

Attention, Mommy: I am TWO!

Today was an okay day, but we had several moments in which it was very clear to me that The Boy is SO two.

This morning he slept in, so I decided to forgo breakfast at home and just have bagels and juice at the center. He was in a lousy mood in the morning and has this thing where he'll just lie facedown on the floor. He won't kick and scream; he'll just lie on the floor and that will be that. We got that on the way out the door, followed by whining, of course.

It's a delicate balance, trying to get the kids out of the house, because I know that I need time to get Meatball down the steps and get our stuff. If The Boy is actually good and is willing to come with me, he takes himself down the steps, where I put on his shoes, and he continues down the steps and out the door. Not today.

At the center, since he got platelets, he got Benadryl. It makes him tired, and usually, he naps. For some reason he wanted to sit in the stroller, and I wasn't really having that. No GOOD reason other than I knew he wouldn't nap unless he was in bed. He spent 20 minutes or so whining about it before finally curling up and falling asleep. My feeling was also, dangit Meatball is sleeping and if you don't go to sleep too then I won't get my nap.

He had physical therapy today which went well--a pleasant surprise. She is trying to get him to jump, which is one of his goals. He is on track with running, another goal. At this age, they still trot, which he does. Jumping isn't happening yet but he is starting to understand the concept. He was very well-behaved, while still being very silly. The physical therapist works with kids under the age of 3 all day--I'd bet that's a fun job. Kind of. It takes just the right person to do it.

For some reason, The Boy no longer likes baths. He used to love showers and love baths. I don't remember exactly how it happened but I'm sure that it has something to do with the hospital. He uses his ever-growing verbal skills to yell "NO BATH!!" and to try and go back to his room for a "DIAPER" which he says kind of like "bapp-er" and heaven forbid I suggest that he use the potty--"NO POTTY!" Even though if he does he'll get to wear "ELMO PANTS!!"

What a blessing, though, that going to bed is no longer the big production that it used to be. I'd love it if he'd sleep a little longer in his bed, but going to about 4 or 5 AM before coming in with us isn't too bad. Unfortunately, half the time his coming in our bed means that Meatball and I leave, because his waking often wakes Meatball, who decides that he wants to be up for an hour. The past few mornings have found me with Meatball in my arms as Musical Daddy leaves the house.

Tomorrow I don't think we have anything to do. We're sleeping in. And probably watching a lot of Elmo. Low white count, although I might still try Trader Joe's with the kids in the double stroller just to get a few things.

Another day, another bag

Platelets today. The Boy is fighting the Benadryl and whining that he wants to sit in the stroller. Except that if he does that, he won't take a nap and be an even crankier pain.

Meatball is asleep in the carrier and we are all on the bed.

Good news is that the hemoglobin level should be acceptable for awhile.

Tuesday, October 27, 2009

So Happy Together

Musical Daddy asked me if other parents enjoy their children so much and if other kids are as much fun as The Boy (not that Meatball isn't fun, but he is a pretty typical baby at the moment). Of course, we think that our child is wonderful, but the question really stuck in my head.

Today I was reading Parenting magazine with Meatball drifting off to sleep in my lap, and I came across this article about the habits of happy families and what they do to feel better about life, regardless of what's going on. Things like feeling satisfied with plans made (such as, enjoying your hotel room while on vacation and not getting upset that someone else has a better balcony than you do) and just enjoying things while they are happening, and remembering them often, instead of getting upset about not being able to do something again or being distracted.

And THEN, I was on the phone with my telephone shrink (she calls every 2-3 weeks and has for awhile; I can't actually go to the real-life therapist anymore unfortunately). Oddly enough, she also has a child who had Wilms tumor. She said that one of the blessings that comes with cancer is that all of a sudden, the less significant problems just don't matter and the joyful moments are truly joyful. It is a blessing because that mode of thinking continues for the rest of your life. My mother will confirm that, as a cancer survivor herself, and we certainly agree. It was at that point that I understood why Musical Daddy said what he did. Of course we think that our children are the greatest, but he has been "blessed" because of The Boy's cancer with the ability to make the most out of the wonderful moments and to make nothing out of the difficult ones.

At some point awhile ago, after having struggled for awhile with The Boy and his behavior as a two-year-old, something switched on in that same regard where I am so much more in tune with what he actually needs and what his real motivations are, and frequently he'll just listen to me which is amazing. And if he doesn't and I need to force an issue, I don't get frustrated--I merely explain what we're doing and why we have to, and I empathize as necessary. It helps that I have Meatball's patterns pretty much down to a science (which means that they're going to change soon) and I can focus my energy appropriately.

Anyhow, I think that we really "get it" when it comes to being as happy as we can be. Sometimes I just want to smack some people for complaining and say, "If WE can manage to be happy and enjoy our children and each other, you can suck it up too" which would, of course, defeat the purpose. More to the point, troubles are not relative (even with troublesome relatives). When you struggle, it's real. And when you can see past your troubles and enjoy life in spite of them, you're always better off.

Super-fun, the 4AM version

Two nights ago, The Boy woke up and was standing at the gate. Not unusual. Holding a book. Also not unusual. Completely naked.

That's right--he had taken off all of his clothing and had placed it in a neat pile by the door.

Just now, The Boy did something similar. Except that this time, his diaper had poo in it.

A bath, a floor-mopping, a bed-stripping...and of course, Meatball is now wide awake to boot. He is currently playing contentedly on his playmat. I will be folding diaper laundry as soon as I finish sharing my wonderful night with you.

Saturday, October 24, 2009

Kinky in Helsinki

Don't worry--this is still an all-ages blog.

That just happens to be the color of hot pink polish that is on my toes. My sister said that we were going for pedicures, certainly not something I normally do.

Definitely needed it.

Thursday, October 22, 2009


It comes too soon.

So we got here early, though later than we wanted, and we are here for awhile. Probably, Meatball and I will leave after The Boy has lunch and settles down for a nap--Grandpa has agreed to be very generous with his time, and we also have great people coming in to help.

Rehearsal last night was great. I finally have MY instrument back and it sounds fantastic.

I'm just so tired...and Meatball is so noisy...I get very worried. And I am sure that I will be spoken to about him.

Yet another lousy thing about cancer--it takes The Boy away from his family. Before Meatball was born, though, I would stay in with The Boy and get bored. Not that he isn't fun, but he wasn't a great conversationalist. Still isn't but getting better.

Wednesday, October 21, 2009

Ordinary enough

Still waiting for chemo. Nothing unusual there. Mostly, we are waiting for The Boy to pee. Not sure if the chemo itself is actually here or not.

They sent chicken and rice, as that is what The Boy tends to eat when he is here. Except now he's more into noodles. And he is currently eating a turkey sandwich.

No more cotton balls

The Boy doesn't need cotton balls anymore. For some reason, they cannot measure his specific gravity with any consistency. So they just need to measure fluid output to determine the start of chemo.

So I guess we won't be getting a call from his preschool teacher at snowman time.

Tuesday, October 20, 2009

an auspicious beginning...

Today found Logical Mommy behaving in a very illogical fashion--dragging two little boys around on multiple errands, all the while doubting their patience levels.

I was pleasantly surprised.

This morning I finally got my bass back!!! I'm going to play it a little after finishing this blog post. I also need to put new strings on. I dropped Meatball off with Daddy during his prep while I took The Boy to the shop. I was a little bit nervous about him touching things, although I kept that fairly well controlled, but more excited for him to go to a shop and see a whole bunch of violins!!! And bows!!! Which he did.

After picking up Meatball, we went to our next destination. Following that, we returned to the school to drop off Daddy's lunch. Then home for our lunch.

The Boy enjoyed a turkey sandwich and grapes. As did I.

We relaxed for a little while. Naturally, one of the rare times that I get Meatball napping all snuggled up with me, The Boy has no interest in resting. I lay there for awhile with Meatball, all the while listening to The Boy play in different parts of the house.

Right now, The Boy is yelling at the gate, not wanting to go to bed. I'm calling his bluff and waiting a few minutes. But let me back up.

We took another car trip, which also included a car tour of my neighborhood from when I was very little. I was pleased to see that there was a family living in my old house. I could tell because they decorated for Halloween and had a swingset.

We came home and again took some time to relax, have snacks, and get boys changed. We went for a walk to CVS and then got in the car to visit Daddy at rehearsal.

Unfortunately, The Boy was very upset all of a sudden, complaining of an "owie, toes." I took him home and he continued to cry and be upset. Of course, when we got home Meatball was also demanding my attention. I was a little panicked. I did call the doctor. And Daddy.

He came home instead of going right to rehearsal, for which I am rather grateful. The Boy seemed better, so he left. I think that having Daddy was what cured him.

So I was, of course, rather worried about how my evening was going to go. Hence my title.

Meatball was still ragin' and ragin' and I couldn't figure him out. I tried feeding him, tried putting him down, tried carrying him around in the carrier and finally after awhile, I got the feeling that he was, in fact, ready for bed, and I put him down again. He squawked once or twice and fell asleep.

I gave The Boy a late dinner of canned salmon, rice cakes and honey, and veggie pockets. Whatever floats his boat. These are by Dr. Praeger and they are one of the few frozen food items that are not ridiculously high in sodium. It is a little whole wheat pocket with various veggies in it, about the size and shape of a small knish. And if you don't know what a knish is, the thing is about the size of a hockey puck. But much tastier.

A quick and careful bath was met with much resistance. Following the pajamas, we talked to Grandma for awhile. Then Meatball woke up, not having eaten in awhile.

We watched Bedtime with Elmo and both boys fell asleep. I'm not crazy about that, because it makes it more difficult for The Boy to transfer into his own bed, but I used the opportunity to start diaper laundry, as I know I won't have time this week...but if I do them now, Meatball will be good for the rest of the week and The Boy wears disposables in the hospital anyway. Then I sat down to read email and such, which is where you found me at the beginning of this entry.

The Boy woke up. I moved him into his room, put him in bed, read him Goodnight Moon, and left. He got up and yelled for a few minutes and got back into bed several paragraphs ago.

I had such a busy day that I don't even want to move...but I have to switch the laundry and I really should do the dishes.

We are pretty much set in terms of having at least one other person with me at the hospital for the duration of The Boy's stay. If you are available and would like to come help/come visit, and you are well, we'll be there first thing in the morning tomorrow. Somewhere in the 4200 wing of the hospital.

Monday, October 19, 2009


At the center waiting for counts. Probably getting blood.

Kicking myself for forgetting the carrier for Meatball.

Admission Wednesday. 3 days.

Sunday, October 18, 2009

Dedication to The Boy

Visit and view the Day 8 morning dedication.

Jeff Castelaz lost his son Pablo to Wilms tumor at the beginning of the summer. He is riding across the country to raise awareness and dedicating his ride to children who are fighting cancer, particularly Wilms tumor, and those who have lost the battle.

Please consider a donation to the Pablove foundation.

Thursday, October 15, 2009

Clock out

Sort of piggybacking on my post about stay-at-home vs. working parents, I'm remembering some things that moms have said regarding the working parent--usually the dad but not always--wanting to come home from work and relax for the rest of the night, and not really be responsible for anything.

Maybe that's a construct of the Cleaver family and Donna Reed and choose-your-own-1950's-stereotype, but sorry--that just doesn't happen. Or if it does, it is likely that there are unhappy people involved.

At least, it doesn't happen until the children are old enough to "clock out" on their own and take care of themselves a bit more--take their own showers, dress themselves, read or play games on their own, that sort of thing.

It is a frequent struggle to figure out how to divide responsibilities, regardless of which parent works when. With The Boy, we did both work, but I was the one with the steady full-time job and Musical Daddy was the one with more sporadic work in the evenings and on weekends, particularly during marching band season. If he wasn't rushing out the door right away, frequently I'd come home and "relax" by nursing The Boy and then hand him right back to Daddy while I prepared dinner and the next day's lunches.

One mom said, "You don't get to clock out--why should he?" Another mom said "Sure, when he comes home it is his time--his time to be with the baby!" It doesn't have to be a scorekeeping endeavor, trying to figure out who has it more difficult and who deserves more of a break at what time. Nor should either parent feel as if his/her share of the work (working outside of the home; household tasks; childcare tasks) is unfair. Personally, I find it to be something of a relief if Musical Daddy entertains the children while I finish the household tasks that I may or may not have been able to accomplish during the day and get dinner ready. Then I can take the time and relax with my family.

Not Yet

No chemo yet. Platelets are still not where they need to be. Even though I got him off the Neupogen by going back for extra counts, he still isn't making chemo today.

So. If we start on Monday and my mother can't stay, we'll need person-help. It's just 3 days of chemo (2 nights). Even if she can stay, person-help would be great.

Tuesday, October 13, 2009

Stay-at-home vs. work

Mothers who choose to stay at home with their children and are able to do so are often criticized for "wasting" their education and frequently find that their contribution is undervalued, particularly if they have a difficult time keeping the house spotless because they are immersed in activity. Mothers who choose to work outside of the home are often criticized for outsourcing the raising of their children for their own selfish pursuits.

Having done both and having had a multitude of conversations about this very topic, I felt as though I might like to explore this topic on my blog. Please leave comments and let me know where you stand. Particularly if I reference you and you either appreciate it or need to correct me.

First, on the stay-at-home side, it is really important for a child to be home with a parent for the first year. Children bond with their parents, but to be around them for most or all of the first year makes it that much stronger. Is it possible for everyone? Not at all. Fortunately, we were able to do that for The Boy, having him home with Daddy during the day (which was how he and later I got into parent-blogging in the first place). While I was the one nursing him in the afternoons and at night, and on the weekends, Daddy was the one with him during the day. He still bonded with me as his primary security person during his first year, but Daddy ranked WAY higher than most daddies tend to and now Daddy outranks everyone.

As for the wasted education, sure, a mother who puts her astrophysics career on hold for 5 years to have 2 kids and stay home with them until the younger one is in preschool is not doing the world of astrophysics any favors, and she unfortunately will take a hit career-wise, but her education is not going to waste. Children who stay at home with a parent who has an advanced degree are being supervised by an adult who generally has more education than a person who is working at the daycare center. This is not a slight at people who teach at daycare centers and preschools. In fact, the daycares are generally well-run by experts, and parents feel comfortable sending their kids there. More on that later. If you are a parent with good education and you are able to stay home with your child, and you choose to do so, you are choosing to provide your child with a well-education caregiver. Thanks to my friend Jo from Australia for feeding this part of the discussion.

My sister was concerned about this point, saying that certainly my children benefit, and my siblings and I did as well, from being home with Mom, because both my mother and I have advanced degrees in education. My mother responded that a well-educated person, no matter the subject, has a strong vocabulary and a certain level of discipline, not to mention the specific subject area knowledge. Nevermind the educator training--I'm a musician, and even though I can't teach my 2-year-old or my infant to play instruments yet, I can play for them, sing for them, and even when speaking I sometimes sing to them. Your passions as people affect your life as parents. And if they don't, they should.

My aunt said that I should never apologize for staying home and taking care of my children. No matter if I came by it as a result of my circumstances or if I came by it voluntarily. She is a mom with an advanced degree whose children greatly benefited from her presence.

EDIT: "With her degrees in astrophysics, she's reading Goodnight Moon and wiping behinds." Well, spin it around, and you have something more along the lines of "Her kids were raised by, and spent their days with, an astrophysicist."

Now, on the other hand, group childcare settings are great for encouraging skill development. Every time The Boy is around other kids, he tries to do the things that they do. Not that we'd always want our kids to do what other kids are doing, but I remember The Boy being around other kids when he was just learning to walk and he was trying to walk more as a result of seeing the other kids.

Working with my sister's thought about children benefiting from time around educators, child care professionals have dealt with children and their issues and frequently will have solutions to problems that parents might not otherwise have considered. Granted, parents who don't want to get involved in teaching their children, in whatever capacity they can, are shirking their duties. Plain and simple. Parents are to oversee the education of their children. Even though when children are older they take more responsibility and teachers are seen as the facilitators, at no point should a parent say "that's teacher stuff--I don't have that kind of training" or "I'm an astrophysicist, not a teacher." Particularly not when children are little. Anyhow...teachers learn to read stories and ask questions; parents should do the same for their children and encourage them.

Some parents find that being able to work outside of the home and then return to their children allows them to be better parents to their children. I felt that way when The Boy was little and I was working. I even said that I go to work to relax. And that schoolyear was pretty good overall.

It's interesting, that my opinion has swayed back and forth and while I see the benefits of both, I know that my place right now is with my boys. And my career is still waiting for me.

Putting Words Together

With the concerns about The Boy's hearing, I am even more grateful for each verbal milestone that he reaches. This past week, he has really been putting words together in earnest. So we've had some good combinations and some not so good.

"Sit mum" (sit with mum; meaning that he wants to sit in the chair with me.
"More honey" "Juice please"
"Watch Elmo" "That Elmo" "More Elmo" "Elmo Daddy" (meaning watching Elmo in bed with Daddy in hopes that both will fall asleep)
"No potty" "No shoe" "No coat"

Fun. Especially the "no potty" one.

Meatball fell asleep on our walk and is just now waking up, so a 7:30 bedtime is unlikely.

Mixed messages

The Boy's oncologist said that the audiologist is full of baloney and that yes, they would modify the chemo because of its effect on his hearing and yes, The Boy would get some sort of assistive devices as he needs.

Perhaps they just wouldn't do anything like cochlear implants until 18 months off treatment.

Musical Daddy told me that rather than get angry with the audiologist, we should let her know what the doctor said. That way, she could change what she says to other patients and they would benefit.

I like how he and I keep each other sane.

Anyhow, while we still need to monitor his hearing, which will be done frequently now, we need to worry less about having a 3 year old who can't hear.

Another issue: the physical therapist likes to have David take the stairs and do a lot of physical activity. He gets lots of bruises, particularly with low platelets. And he is two, so he falls. Today he fell a few steps. Earlier, he also tripped over the stroller while at the center. The bruises are rather unattractive. And worrisome. Not really--just annoying.

Speaking of platelets, he is still not ready for chemo, although he isn't scheduled until Thursday. Report to the center and see how the counts are, and...he will or he won't.

Monday, October 12, 2009

Can't it wait?

Meatball seems to be in the early stages of teething.

The Boy didn't really start cutting teeth until he was almost 6 months old but he started with the chewing on stuff much earlier.

Of course, it seems to be affecting his nursing. Not too much but I can tell that he is fussy and uncomfy as a result.

Just when we get him calmed down, something else pops up with him. It's the Meatball whac-a-mole game.


Sunday, October 11, 2009

I should have...

I saw a mother and son at the supermarket today while I was with the boys. The little boy was about 5 years old and had hearing aids. I wanted to approach them and ask some questions, but I was worried about imposing upon her.

That was stupid.

I should have talked to her. The worst that would happen is that she'd tell me to get lost. If someone approached me and started asking me questions about cancer, saying that their child was recently diagnosed, I'd engage that person in conversation and likely exchange contact information. I'd try to be as much of a resource as I could, and never once would it cross my mind that this person was imposing upon me.

I don't know if that's just me or if most people whose children have some sort of major issue feel that they can and should help others to deal with it if they can.

Any thoughts?

We spent the weekend really running The Boy around, knowing that he had good white counts. I know the pattern pretty well; since Friday's ANC was over 10,000, and he had a dose of Neupogen that day, it is likely that Saturday's was similar if not higher, while today's is probably on its way down because he has to make his own without the help of the shot.

Friday night we went to the football game with Daddy and the band. The Boy was running and playing and picking up flags and socializing. Meatball was in the carrier with me for a good chunk of the evening but was passed around during the time when I was chasing The Boy.

Side note: I have finally figured out how to nurse Meatball in the ErgoBaby carrier, and I managed to do so while bagging groceries on Friday.

Saturday, we went out to breakfast and walked to the farmer's market. Musical Daddy and I both gave blood, as there was a bloodmobile there and we could take turns watching the kids. The Boy made an appearance and of course the nurses there were thrilled to see him. The guy that did my blood was GOOD at what he did. He looked at my veins before sticking me and could see which was fast and which wasn't, and he picked a good one because I gave a pint of blood in 7 minutes. Got a little dizzy after that.

We had an early dinner and went to the playground. Good times. Meatball didn't feel like going to bed early.

Today, after Daddy got home, we ate and napped. It was quite remarkable--Meatball was crying, and I put him down because he really didn't want to be held. Daddy was about to take him elsewhere (thank you, because I wanted the nap) and he fell asleep. More remarkable? He woke up a little while later and I grabbed him and nursed him back to sleep. That rarely happens during the day. We actually got a real family nap!

After the nap, we went to the Watchung Reservation playground. This is a much larger playground than the one down the street. It was great fun, although The Boy didn't want to keep his jacket on despite the fact that he was shivering. Once it got to a certain point, we said he could keep the jacket on or we'd leave. We left. Oh well.

Dinner with Grandpa. Then home. Meatball wasn't in the mood...for anything. I bathed him and tried to get him to sleep. Not quite. He just raged the whole time. Eventually I fed him again and sleep came.

If he ditches the early bedtime thing, Tuesday and Thursday nights are going to be very difficult for me.

I still think that his angst-filled first month has contributed to the fact that he is really a non-soother. If he is upset, snuggles don't work. Picking him up when he is mad and bored will sometimes help, but in general, he cries. He won't be snuggled to sleep and he doesn't like being held unless he is being played with. Fortunately, since he is old enough to be amused, he is less upset in general, but he cries himself to sleep quite frequently, and there's frequently nothing that I can do about it. I hold him and know that he's tired, but he won't nurse, and he rages on. I put him down in the carseat to go out or even just in the bassinet and after a few minutes of crying, he falls asleep. Sometimes he falls asleep without fanfare in the carrier but even there it frequently takes some crying before he falls asleep. The sleepy cry is very obvious--it is more squeaky than anything else. The hungry/angry cry doesn't have the squeakiness in it.

We were wondering if maybe we wanted to try reverse training him...trying to teach him that the best way to soothe himself is in someone's arms...but I don't know how we'd do that. And I don't know if we could--maybe he's just always going to be that way.

So many parents want their babies to be able to soothe themselves and leave them to cry in order that they will do so. We want our Meatball to fall asleep in our arms more often.

Friday, October 9, 2009

I am so smart

The Boy's ANC doubled and we are good to stop Neupogen.

Mommy always knows.

Extra sure

The Boy had good white cells yesterday but apparently not enough to stop Neupogen. If we don't stop Neupogen in time, we don't start chemo on time.

So we will check again.

Thursday, October 8, 2009

Silly Mum

Although I am still pretty down about the fact that The Boy is slated to be hearing-impaired, I do have to share some good things.

Over the past day or two, a "beep" to the nose elicits the response of, "silly Mum" from The Boy. It is SO cute! He also said "violin and bow" just like that yesterday (good!) and "no medicine" (not so good). He has quite the grasp of syntax, identifying "number 1" and "that A" (that's A). He just doesn't care to talk as much to other people.

His physical therapist will be made aware of his present and pending hearing loss. Not sure if he will require services for that until after age 3, at which point he would receive services through the school district. I have a pretty good feeling about his gross motor development--if he can stay out of the hospital, except for chemo, then he can continue to progress.

Today, for this video, kids on treatment and off were asked what they want to be when they grow up. I had to answer for The Boy. I said that perhaps he would be a writer. Musical Daddy and I frequently see him as an adult with a more introspective and self-directed path, and usually The Boy as a writer makes sense. He could write comic books, I said, as he spends time at the comic book store.

But now I wonder if maybe he won't ne a doctor or researcher, because what he has suffered and will continue to suffer in the name of being "cured" is inexcusable. I can see him getting mad and wanting to do something about it.

I just want to see him grow up..,

Don't want to hear it...

The Boy is watching Sesame Street. He was listening to the theme song and trying to sing along, as he has watched the theme song so many times. Earlier, he was reciting the words to "Jesse Bear, What Will You Wear" which he has only heard a few times and is just now trying to sing along with "C is for Cookie."

Not sure how long he'll be able to do that.

Today, we found out that he has mild hearing loss as a result of chemotherapy. The drug in question is, once again, Carboplatin. Currently, his hearing is that of your average middle-aged man. Were it to hold steady at that level of damage, it wouldn't be such a big deal, but likely, by the end of the treatment, he'll have a lot of hearing loss. Furthermore, they won't even talk about giving him hearing aids until he is off treatment for 18 months.

We have some memories of The Boy showing musical aptitude as a baby. Making faces at out-of-tune barbershop tags, singing notes at choir rehearsal, and clapping and conducting in rhythm. Certainly the hearing aid technology is great these days, but once again, this is one of those things that we'll always wonder about. What type of gifts might he have otherwise had that are being taken away by the treatment for this horrible disease?

How tall might he have been without radiation? How tall should he be now, if it weren't for chemo slowing him down? When would he have walked and talked?

Today The Boy was in a video. The topic is "when I grow up" and since he can't say, I decided I'd say he might be a writer. Maybe he'd write comic books. I'm excited to see it.

So what? My kids like me.

I did not go to orchestra rehearsal last night. I was tired and, more specifically, I had some hints that the mastitis was trying to come back, and I didn't want to miss a feeding with Meatball. Furthermore, Musical Daddy was exhausted.

I realize that not leaving the house for nursing-mom reasons would probably not be viewed as necessary. It's one of the reasons that mom don't bother to nurse their babies--why be "tied down" to your baby? Why go through all of the pain and suffering? Granted, most nursing moms don't experience the amount of pain and suffering that I did--severe cracking starting after a week, a baby who was constantly agitated, losing the latch and making the cracking and pain worse, a thrush diagnosis accompanied by the strictest anti-thrush diet for nearly two weeks, finally getting some relief with better positioning while we waited to fix his tongue tie, then an oversupply as he nursed more effectively which led to mastitis. To me, there is no other option for feeding my baby. Unless there is something wrong with me, and even then, bring the baby or the pump to me and stick one or both on me, conscious or not. Period. The end.

I have to work to keep the system running well. Allegedly, it is a well-oiled machine after the initial month. Since we had to make major adjustments to the machine, it is only now that I am experiencing the convenience and ease that I so looked forward to. With The Boy, since I was working, it was more a matter of discipline. I had to make the time during the day to pump, which I did. This time around, it is the more traditional nursing mom relationship, and expressed-milk bottles for Meatball are few and far between.

So I missed rehearsal for the extra rest, and in order to maintain a functioning system in my body. And while I don't particularly like to miss rehearsal, as I love to play and I love the company, it's okay.

The bigger issue at hand is being "tied to" my children. Yea, even if I didn't produce all of the nourishment for my baby, I would still be "tied to" him. From an anthropological standpoint, The Boy, being the older one and not the baby, is a member of the "pack" and can be cared for by others (although usually it's still me). He has strong attachments to Daddy and Grandma, and his paternal Grandpa as well. Meatball, being a nursing baby who is with me almost all the time, is still all about me. Why in the world would I want anything different?

If you have kids and don't want them to be attached to you, then perhaps you needn't have bothered. Children who are attached securely to their parents become more independent as they grow.

Anyhow...interesting day today. I have to figure out how to get The Boy through physical therapy, a hearing test, and a video shoot (oh, and a finger stick too, which is no big deal) while juggling and altering naps and meals. He'll LOVE that.

Tuesday, October 6, 2009

Hooray for Bedtime

Usually when I am alone with the boys (2 nights, sometimes 3 nights, in the week), we do pretty well. I get Meatball to bed nice and early, since that's what he prefers (and you do NOT want to get on Meatball's bad side), and I get time to spend with The Boy. I also get to do a pretty regular bedtime routine with him. We've been doing his bedtime routine for awhile, even before trying to move him into his bed.

I've probably described the bedtime thing before. The signal that it is bedtime for The Boy is that he brushes his teeth. I was proud that today he actually wanted to brush his own teeth, which he hasn't done for me in awhile. Then from teeth-brushing, he gets into pajamas and a night diaper (if he hasn't already been in PJ's from having had a bath). We read Zin Zin Zin A Violin and Goodnight Moon, we talk about our day, and I sing him some songs.

Meatball got up in the middle and at the end of the bedtime routine. Probably because I waited too long to put The Boy to bed. The first time he was up, I took The Boy in and we continued watching Bedtime with Elmo, which is what we always watch when I am putting Meatball to bed and I am at home with the boys by myself.

The second time, we were just about done with his bedtime songs, and I thought I'd just chance it and leave, to tend to Meatball. He said "no!" but stayed in bed, and stayed there for awhile. He did come to the gate to complain but it lasted for less than a minute.

This is HUGE. Because it means that he gets the idea, that going to bed is what he has to do, and that it's not so bad. Certainly not worth the hours of wailing that sometimes preceded actual sleep.

And again...I feel better about it because I know that he really understands.

Monday, October 5, 2009

Port Access Video

If anyone is curious to see what a port access looks like, I took a video of The Boy getting his done. He is very VERY good. The child life specialist said that she wants the older kids to see David getting it done because they complain way more than he does.

Requisite warning that this is a medical procedure and while it isn't really so bad, you might want to skip it if you are concerned. Click here for the video.

We should just move there...

Today The Boy got a platelet transfusion. Tomorrow he'll be getting blood--they didn't want to do both in the same day because the fluid overload would be bad for his blood pressure.

Thursday, he has a hearing test at a different location. Then we go to the center because they are making a new video and they want The Boy to be in it!

Depending on what his counts are, we may also come back Friday morning. They are closed next Monday for Columbus day.

We should just live there.

Meatball is 3 months old today! Can't believe it's already been that long. It is said that around 3 months is when babies really start to chill out and become a lot more fun. Tell you what--we've had to earn every bit of it.

I stuck him on the scale today. Tomorrow I'll probably ask if I can measure him and see how tall he is.

He has gained about a pound in 2 weeks. 17 pounds 10 ounces in clothes.

Saturday, October 3, 2009

I wouldn't eat this way but...

Who am I to judge?

The Boy is eating a late lunch. He didn't have much in the way of breakfast. He is having corn chips, cheese, and grapes.

And he is shirtless. He removed his shirt, a button-down, before dining.


Perfectly timed

The boys were both very much in need of a nap.

The Boy disturbed Meatball's attempts to fall asleep while doing his usual sit-and-fit. You know the one. But, when I got them in the car, they both were out in no time.

I had the guy at the sub shop, whom I had called earlier, bring out my sandwiches to the car (and gave a tip for his trouble) so I would not need to wake the children. I went to Musical Daddy's rehearsal to drop off screwdrivers, news, and lunch, and I even got to sit with him and enjoy a meal as the boys slept.

Now I am home, in the driveway, and they are still sleeping. Meatball isn't an issue in his seat that can be lifted, but The Boy won't continue sleeping if I try to move him. So, I sit.

I think I'll give him another half-hour, if he doesn't wake up beforehand.

He had no real nap yesterday and was exhausted at bedtime...although he didn't do too badly last night in terms of staying in bed. Or going to bed in the first place. He had fallen asleep with Musical Daddy and was given meds, and put to bed mostly asleep. Not great, according to the sleep experts, but it didn't yield any different results.

We are up and moving now...nope, false alarm.

The weather is crappy. We wanted to go see the marching band show this evening, but I won't bring them out in crappy weather.

Now we are up. Meatball, anyway.

Friday, October 2, 2009

Gettin' all L&L on his skinny little behind

Today, The Boy has been very two, once again. I am pleased with the way that I handled it, as much as I could.

I had to use bedroom time to get him to chill the heck out when, during lunch, he suddenly refused to wear his bib. I know that most of the time, depending on what he is eating, he doesn't even really need the bib anymore, but frankly, the bib makes a great puke-catcher, as I got to see once again this morning. So he didn't want to wear the bib, and of course I tried to make him, even letting him choose it. But he didn't want it. The statement was "You always wear a bib when you eat at the table" meaning that if he didn't wear a bib, he couldn't eat at the table. Fitfitfit. Bedroom. I waited about 2 minutes, even though he was continuing to scream his head off, so that he could reset. When he was out again, it took him a little while and several repetitions, but he eventually left the bib on and had a nice lunch of salmon, triscuits, and grapes.

He had some juice, too, which he saved for later, and then dumped on the bedroom floor.

Kids like dumping stuff on the floor. Kids who dump stuff on the floor have to stop what they are doing and help clean up the floor.

The latest thing is, if he makes a mess trying to get something he wants instead of asking for help, I tell him that I'm too tired to get him what he wants unless he helps me clean up the mess (the "energy drain"). Generally, it makes no difference to me whether he gets it or not (cookies or juice or whatever else) although last time I had to contrive the help so that The Boy would actually get the juice since I want him to drink enough.

Meatball is kicking around on his playmat and The Boy is playing with beads, so I have a few moments to sit and recharge.

Moments over, I think, because I am going to attempt to take The Boy to the potty.

Biding my time...

One of the principles of Love and Logic is that you allow your children to make many of their choices so that when you do have a non-negotiable issue, you make it happen.

I remember the fighting over medicines that has since become a non-issue. The Boy is a pro. The nephrologist said it would happen, as long as we kept at it with him. We also had help from the incomparable Nurse Pam.

So now, I have to put the coat on him. And force the issue. Fortunately, I found a snap on the top that he can't get to ;). When he knows he is beat, he gets over it and moves on. Unfortunately, he is stubborn and rarely admits defeat. Not that it is a matter of besting the two-year-old. It's more of a cooperative effort. Kinda.

Leaving to go collect kisses!

Thursday, October 1, 2009

The Terrible Mommy

It was just one of those days.

I took the boys to storytime at the library in a neighboring town. Meatball slept through the whole thing; The Boy just wanted to run around the library pulling stuff off the shelves. No interest in what was going on, at all, until after it was over. He then decided that he wanted to play with the display posters and then he wanted to play with the shakers and bells that had been passed out. After I saw another kid put it in his mouth.

Every so often I tried to bring him back to where the other kids were (not that they were all perfect but they at least stayed in the general vicinity). Fitfitfit.

Got home and tried to figure out if I wanted to go to Trader Joe's or if I wanted to get him to nap first, and also time the visit with Musical Daddy's prep so we could stop by and get kisses. He ate a bowl of cereal and then after various home things (changing of diapers, feeding of Meatball), we went, because he didn't seem tired.

He was falling asleep in the car on the way home. Thinking about it, I should have kept driving and kept the nap going. Nope. Moved him in, where it took him well over an hour to fall asleep.

We wanted to keep our 3:30 PM playground date, which I initiated. Stupid me, I woke him. I had, in the meantime, been having some quality Meatball time.

I woke him, with medicine. Even dumber. He was physically fighting me the whole way.

He didn't want to wear a coat. He didn't want to wear shoes. I got him to wear shoes by the time we got to the park.

It was a bit cold. I should have pushed the issue of the coat but it was the sort of cold that if you are walking around and playing and such, you don't really need a coat. He started out not walking around. I shouldn't have stayed, because he wouldn't wear the coat.

This playground is new to him, and it has some familiar fixtures. I was proud to see him climb the step wall (a bit like a rock wall except with wood blocks that are easier to navigate). That's about all he did physically.

We had friends show up just when I was about to leave. I should have left.

He was shivering and still wouldn't wear his coat. Finally we did leave.

I had offered him food before we left the house. I had offered him food when we arrived at the park. When we were leaving, he throws a fit because he is hungry.

Meatball is also fussing at this point. I just wanted to leave.

When we got home, The Boy throws a fit because I took him out of the carseat and put him down. Generally, he walks into the garage without an issue. Sometimes, usually when it is most inconvenient, he throws fits. So I brought Meatball into the garage.

It gets a little fuzzy after that, because both children were screaming at me. Meatball needed to be fed. So did The Boy. But The Boy wouldn't tell me what he wanted. Finally, I just shut The Boy in his room for a minute because I couldn't take it anymore.

At least then I could calm Meatball a little bit and then figure out what in the heck The Boy wanted without him getting agitated by Meatball's yelling.

It's very trying. They call it the Terrible Twos. It makes me feel like a Terrible Mommy. Because I'm always agitated with him.

But I am careful not to yell at The Boy, or smack him. Why? Because where can I go from there? If he already knows that I'm going to yell or hit him, why should he bother listening? There are plenty of kids whose parents do spank or smack their hands, and they do something wrong and hold out their hand for a smack. Seems pretty counterproductive. At least if I continue to be gentle, even if I am angry in my head and my teeth clench twenty times a day, I can hope that he will eventually do what he is supposed to do, with the knowledge that it is asked of him with love.

In the meantime, I'm going batty. And must re-read Love and Logic. Twenty times.