Monday, August 31, 2009

All tied up

Tiny Guy has a tongue tie. He's getting it fixed on Friday. Hopefully, no more gaping flesh wounds!!!! And he should be less gassy as well.

They don't necessarily think of tongue tie in a baby who has grown like him.

By the way, at 8 weeks, he is a bit over 14 pounds. Almost 5 pounds gained since birth. Fat boy.

Saturday, August 29, 2009

Happy Birthday, Boy!!!

We had The Boy's birthday party today, and it was such a success! It was supposed to have been outside, but honestly, it worked out better to have it indoors. I do wish that the weather had been nice enough for the swingset but we'll get to that eventually. Maybe tomorrow if it isn't raining.

All the grownups got along, and it was a good mix of people. All the kids were wonderfully behaved, got along famously, and played with ALL of The Boy's toys.

One of my friends from WAY back came to the party, with husband, kids, and her mom! My mother was thrilled. They're good people. They even helped us with cleanup after the party was over.

I demolished my diet today but will resume at least a moderate version of the anti-thrush diet tomorrow. The biggest thing I think I'll change is that Ezekiel bread is now allowed. And if I go out to breakfast, so is corn beef hash. Dairy is still off the list. And I'll continue to watch my sugars. I feel somewhat better as far as nursing is concerned but I don't know how much of it has to do with the diet and how much has to do with the fact that Tiny Guy really is calming down, and that I can now tell if he is actually hungry or if he is playing.

This morning it took pumping, calming by Grandma, AND change of position to get him to eat well.

Today/this week, he likes to lie on his stomach across someone's lap and listen to Mommy sing the Polecats. And Daddy singing bass (but Mama sings lead, at least in this song, and bonus points for getting the reference). Who knows what will make him happy next week?

Thursday, August 27, 2009

My Divas

I went to another La Leche League meeting, and it was just lovely. It's the best place to be with Tiny Guy when he is fussy because I can actually get help or at least sympathy, and no one gives me dirty looks, and he is not disturbing my husband or The Boy. It's also the best place to go to get help on many things mommy that may or may not relate directly to nursing the baby.

The first time I went, I learned that I could nurse in the sling but that I had to tighten it to keep baby secure and maintain the latch.

The next time, one of the leaders showed me that I could carry Tiny Guy in an upright position on my hip, which is much more comfortable. I didn't know that such a young baby could be carried that way but she carries her son that way all the time.

This evening, this same lovely person watched with empathy as Tiny Guy spent much of the meeting in fussy-nursing mode. This is where he is hungry but he fusses too much and swallows air, necessitating burping every 3-5 minutes. I thought that perhaps the diet change and ditching the vitamins for now would alleviate that problem, and it's much better, but he still does it, especially in the evening. She recommended that I turn him all the way to his side, facing me, when he is about to eat. Belly to belly. Also, interestingly, she said that her son gets fussy like that in the evening and what works for them is for her to nurse standing up and walking around, usually using the sling.

I love the fact that I can go to these meetings and talk about nursing and mothering and everyone has similar ideas. That said, I'm probably not as AP (attachment parenting, also sometimes known as crunchy) as some of the moms. I really go back and forth about how AP I want to be.

For example, The Boy is transitioning out of our bed and into his at night and even sometimes for naps. Of course, as I write this he is watching Elmo with my mother in the guest room and will probably not spend a moment in his own bed. It is just too crowded, and he will eventually get a much better night's sleep in his own bed, once he is used to it. As I mentioned, I had to put him in there when Musical Daddy had such a sore back that he could barely move. He had taken pain medication, which means he can't sleep next to his little one. I had to keep bouncing The Boy back to his room and there were definitely tears and struggle. I could have cut down on the tears and struggle by bringing both boys into the guest bedroom, or staying in there the whole time with him, but I didn't. I've been so determined that letting him cry for long periods of time is unacceptable. Which is still true. However, if he gets upset for a short period of time while going to bed, I don't worry too much about his hypertension like I used to, only because he throws enough fits in a given week when he doesn't get what he wants, and this is just another one.

I began this post at 9:30 PM but forgot to send; now it is 3:30 and I'm here with Mr. Up-All-Night. Speaking of attachment parenting, I long for the child who sleeps in the bed, wakes up to nurse, latches on before either mom or baby really wakes up and goes BACK TO SLEEP! He's not too difficult in that regard, but my own discomfort, coupled with his tendency to eat too fast and harbor air bubbles, needing to burp all the time, kinda puts a damper on the whole peaceful family bed concept. With or without The Boy in there, sometimes I just have to leave the room because he is fussy and wakes Musical Daddy unnecessarily. Fortunately, since he really has settled down quite a bit, he doesn't spend too much time screaming at me. Right now, he is in my lap kicking around and smiling. Clearly, 3:30 AM is playtime. Little pain.

Meanwhile, The Boy is in his bed, although Grandma went in at some point to quiet him down and ended up falling asleep in there. That's progress--certainly better than him getting up and wandering down the hall.

Sleep is for the weak...

Odd sleeping preference

Tiny Guy isn't fond of napping in his bassinet. Surprise. He is quite keen on napping in his carseat. Oddly enough, he seems to like napping on his playmat.

Very strange.

I put him there, played with him a bit, and then went to do dishes. When I returned, he was asleep. He is on and off sleeping and playing and has been for the last 40 minutes.

Perhaps I need to get some sort of mobile that he can bat at in the bassinet and maybe he'll actually sleep in there?

Wednesday, August 26, 2009

Whack-A-Mole, the PM version

Tonight I am compromising my principles.

I have no choice--Musical Daddy has a sore back, took pain medication, and cannot sleep next to children.

The Boy has to stay in his bed. And I have to keep putting him there.

While also attending to the needs of Tiny Guy.

Fun.

Tuesday, August 25, 2009

The best laid plans

The Boy is visiting with his uncle this evening while Musical Daddy is in rehearsal. Since we had thought we'd be in the hospital, we had asked for help in the evening. Help came instead to the house in the form of "Cousin" J, a very good friend who went to college with one of my sisters and happens to live very close to the hospital (and has a lot of connections in the area). I guess Tiny Guy knew that he was later than expected because he fell asleep in the sling and stayed that way until Cousin J arrived.

I was able to eat my dinner in the meantime, not worrying much about when he'd wake up (my mom said that babies tend to wake up to eat as they hear the food being served).

So we puttered around the house doing some straightening as Tiny Guy finished sleeping. While Cousin J organized the linen closet, I sorted laundry. At this point, Tiny Guy woke up wanting to eat and I figured, why not go for it and keep him in the sling? I have had varying degrees of success over the past few days with Tiny Guy's meals to go (as in, him nursing without me being anchored to a chair), and this time it worked famously. After he finished eating, Cousin J took him for a walk, and I did some cleaning. My dresser and nighttable are now clear and a few other odds and ends around the house are taken care of, and I did a cursory mopping of the floor in our room (hard to do when the laundry is still there).

Sometimes that's all we need, either at home or at the hospital, is an extra person to entertain the children while we get things done, or to help us do some things that we may not otherwise get to.

Working backwards, since it has been days since I've posted:

The Boy was supposed to go in for chemo on Monday. Actually he was SUPPOSED to go in last Wednesday or Thursday. But the platelets still have not recovered. That is due to a combination of extended time on Neupogen and the fact that sometimes the platelets just take longer to recover after Carboplatin. We had a whole team lined up to assist in the hospital, only to have to tell them "nevermind." Nature of the beast. Anyhow, the doctor is giving him a full week "off," counts on Friday, and admission next week on Monday.

The complicating thing is that next week is band camp for Musical Daddy. Not a big deal, as my mother had already committed to coming here to help out with the kids during that time. Additionally, one of her friends is coming for the week, someone who also had lots of kids including twins. Even so, The Boy LOVES LOVES LOVES his Daddy.

Since he was supposed to have gone in for chemo on Thursday, my mother had already made plans to come in. She couldn't have stayed home and waited, because she had my younger cousin visiting from New York and was taking her home. My cousin stayed over and was really helpful with the kids.

Yeah, I have kids. Two of 'em. I guess that being able to say I have multiple kids means that I know something about the whole Mommy gig.

We had a pretty good weekend, especially since we had Grandma here to help. A 3 to 2 ratio of adults to kids is pretty reasonable when it comes to getting things accomplished. At least when you're talking these kids. They're little.

We are considering buying a minivan and trading in Musical Daddy's car. A used one. And we are in a position to say "this is what we want, this is what we're willing to spend. Don't have it? Okay, bye." Because we don't HAVE to do this right away. But the reality of having multiple small children is that they come with stuff. And once they don't require as much stuff, they have friends. And musical instruments and/or sporting equipment. Or large artistic displays. Point is, if we can make it happen, we may just get ourselves a minivan.

I used to have one. It was purple.

We spent a lot of time around the house just playing with the kids and having fun. Walks were plentiful. We got to take The Boy, just him, out for breakfast, as we didn't know when we'd be able to do so again. We didn't know that we'd have this week available.

I've been very good about my anti-thrush diet. As a side effect, I have lost 5 pounds. Losing weight that fast may not be permanent, or it might be. Not a bad thing to go on a diet like this after pregnancy, in that I can eat as much as I want but my choices are limited, and very few things on the list are a problem with weight gain. I don't plan on sticking to this diet so strictly, but after The Boy's birthday party, I think I'll follow a slightly less stringent set of recommendations that just say to avoid white foods and yeast, and cut down a lot on sugars.

I am hoping that it does the trick. I am definitely feeling better even if appearance doesn't reflect it. Tiny Guy still doesn't show physical signs of having thrush, and hopefully he won't.

Back on today, though: we visited Musical Daddy at rehearsal today to have lunch. After lunch, he was running a section rehearsal and reminding the kids to mark time. For those who aren't up on the marching band terms, marking time is to march in place without lifting your feet. Sometimes the expression is used to mean waiting for something. Anyhow, the kids marked time...and so did The Boy! It was so cute!!!

So Tiny Guy is asleep, and I'm going to join him.

It's been nice to have at least a little bit of real summer.

Friday, August 21, 2009

Life is a beach

A beach. And sometimes something that sounds a bit like "beach" but isn't. I'll talk about that first.

The Boy is not making counts for chemo. He was on Neupogen for too long, causing his platelets to stay too low. Furthermore, his hemoglobin is really staying low, not recovering at all. Part of that is the Vasotec, one of the BP meds. But his bone marrow is really shot.

The Wilms Tumor email listserv has been a great resource. I have been able to ask lots of questions and learn from other parents who have gone through what we have. The parents have children in various phases of the journey. And one of the things that sticks out in regards to The Boy's protocol, called the Stratum-C (not sure why), is that many people didn't finish it but still are off treatment and NED. As in, no evidence of disease at each scan. One girl just finished the entire thing, and people on the listserv were responding with congratulations of course and remarking that so few people finish it. I had heard that before, and I asked The Boy's docs if he will complete the protocol. They said that he will.

If that's the case, we won't be done until the beginning of 2011 at least. Not with all the delays and him being on medicine that screws with his bone marrow in addition to the chemo drugs.

If chemo does not start on Monday due to hemoglobin being too low and him needing yet another tranfusion, we will have to postpone or cancel his birthday party.

Cancer sucks.

But on the beach side of things from my title, we went there yesterday!!!! We drove to Sandy Hook, leaving at 4:30-ish and arriving about an hour later, even factoring in a feeding stop for Tiny Guy. It was a great time to go in that it wasn't too hot and the sun wasn't too bright. The Boy was slightly less freaked out than last year but still very attached to Daddy. Daddy was great, though, doing an excellent job trying to acclimate The Boy to the sand and water. Tiny Guy really enjoyed the ocean sound. He likes the outdoors, if I haven't mentioned that a few times.

We packed dinner. Smart, because between my diet and The Boy's diet, it would have bern tricky to find suitable meals.

It was only okay overall, but going to the beach and just stepping into the ocean a bit makes me feel like we didn't completely miss out on the summer experience.

I failed to mention that I attended a La Leche League meeting last month. I attended again today. Musical Daddy was a bit intrigued that there is an entire group dedicated to breastfeeding and he was wondering what we talk about.

Basically, in addition to talking about breastfeeding, we discuss parenting issues, nutrition, and health. The leaders are trained (not sure how but if my life weren't so crazy I'd want to train too) and have extra knowledge on these subjects. I have gotten help with wearing Tiny Guy in the sling. I have offered advice about working and nursing. I have also seen lots of cute babies.

Why does such an organization exist? Because so many mothers want to nurse their babies but have never seen a mom nurse a baby and don't have anyone to ask. Decades ago, women were convinced that something made in a lab from the milk of another mammal that can be measured was better for human babies than their mother's own milk. How screwed up is that? And we clearly have not recovered. Hopefully my boys will see nursing babies as the norm.

Tuesday, August 18, 2009

Wonder of wonders, miracle of miracles

I have two boys, each asleep in his own bed.

I don't know when and if I'll be able to replicate this but the way it went down was that Tiny Guy fell asleep nursing at 8:30. I put him in bed figuring I'd get 5 or 10 minutes, but amazingly enough, he stayed asleep. Meanwhile, I did the bedtime thing with The Boy, except instead of snuggling in our bed, I was in his bed.

He was less comfortable and more resistant to sleep. I wasn't. I actually fell asleep with him around 9:45. A call from Musical Daddy woke me but not him, and I was able to get out of his bed without disturbing him.

The evening was okay but really felt like a workout. I had been on a walk with Tiny Guy earlier and was still a bit sweaty from that, but it was just nonstop with these boys. Until now.

The Boy and Tiny Guy each had their moments of crankiness over the course of the evening. Of course, Tiny Guy's eating had improved all day, but he saved his more fussy behavior for this evening.

The Boy actually started feeling better as the evening went on. Until he slipped getting out of the bathtub. I had been keeping a more careful eye on him this evening as his balance seemed to be a little off. Isn't irony a kick in the head. Anyhow, he was fine as I observed him. Of course the first thing he wanted was to watch Elmo. We finished watching Elmo's Potty Time, which we had started earlier.

By the way, I did catch him making poo and put him right on his potty. Even though he didn't actually go in the potty, he did stay on there for awhile. Later on, he sat on the potty fully dressed. I don't know if he did anything substantial at that point. As I said--I don't care quite yet if he is fully trained but I would love it if he'd pee on the potty or in a cup so that he doesn't have to wear a bag for urine samples. Those are annoying.

Amazingly enough, I was able to give each boy a bath this evening. Can't bathe them together until Tiny Guy can sit up reasonably well. Not that The Boy would really want company in there as he has taken up swimming in the tub.

I also rearranged The Boy's room. It is temporary, because the ultimate rearrangement will be to make his room back into the guest room and designate the guest room for both boys. Even if one or both of them doesn't always sleep there, I'd be happy for The Boy to start out in his own room now. The train table is in the corner.

I hear a 2 year old. More later.

What's it worth to you?

I am starting a diet.

I have thrush, for which I am being treated medically, but it will do me no good to treat the symptoms if I don't get to the root of the problem.

I am going for a slightly looser version of this plan. I'm sure that I will also lose weight on this regimen, but my motivation isn't weight loss. I don't think I'll be "cheating" because the impetus for not cheating is that I get to heal the flesh wounds faster and have a happier baby. It's amazing how looking at a cookie can bring on the idea of pain. So I'll stick with this for a few weeks, very strictly, and then perhaps I can phase in some things that had been off the list.

I went to visit Postpartum Place as per my doctor's advice, to purchase some ointment. Lanolin doesn't do it for me; this other stuff by MotherLove just might. It's a lovely little place. I had a great chat with the lactation consultant, who advised me to look into dietary changes in the first place. We also discussed some of the issues that we have with Tiny Guy and how we really think that spending all that time under lights instead of being close to us has caused some of his fussiness problems. She said that in speaking with someone who specializes in jaundice, he doesn't even like to use lights until the levels are REALLY high. I also told her that the hospital was pushing formula on me right and left; she said that New Jersey is rather pro-formula because the pharmaceutical companies are right here. Interesting.

The grocery stores were today's destinations. I was discovering, as I tried to find things to eat, that so much of what we have is incompatible with my diet. Surprising, since we do eat well, but things like wheat, corn flour, soy, and basically anything packaged or with sugar are not allowed, and fruit is to be limited in favor of vegetables. I can have all the meat and eggs I want, thankfully.

I may try to talk Musical Daddy into following my diet with me. He's been griping about his physical condition anyway.

The details of The Boy's CT scan can be found here. I need to eat and get ready to leave, as right now The Boy is getting hydration following the scan, to get the contrast out of his system.

Sunday, August 16, 2009

Just give in...

The Boy and Daddy are dozing on the chair. I wanted to
ride my bike to the health food store. Tiny Guy just doesn't want to settle down. I fed him and then moved him. That was 20 minutes ago. Now he is sleeping, but facedown on me. I was slowly patting his back, which generally soothes him if he isn't crazed.

Do I move him and risk waking him? Or do I give in to the temptation of a nice afternoon nap with a tiny boy blanket?

Nap, bike later, maybe even with The Boy.

Saturday, August 15, 2009

Walk Tall

This morning, we went for a walk to the diner and the Farmer's Market. The Boy's white count is, hopefully, on its way up, although we were very careful about hand-wiping and not letting him touch too much stuff. I bought some extra veggies because I'd really like to make a habit of eating them. Raw, even.

Tiny Guy was complaining on the way there but fortunately fell asleep. I'd just as soon not bring a screaming infant into the diner if I can avoid it.

He woke up as we were finishing at the market and was HUNGRY. I fed him by the fountain in the middle of town. Musical Daddy took The Boy to the bank, which wasn't open, so we had to go back after Tiny Guy was done eating.

When we got home, we ALL napped. Truly a rare treat.

It seems as though I spend a lot of time feeding Tiny Guy. Fortunately, at some point, it gets better. He will get faster at eating and will settle down in general. In the meantime, it's a good thing he's cute.



Anyhow, we had lunch at home and went to Nomahegan Park to walk the trail. I'm feeling much better because I've been walking a lot. I am looking forward to getting back into a lifting routine. It's been years, but I figure that if I mention it on my blog and talk about it from time to time (and this also feeds into Facebook so I get lots of readers), it will be motivation enough for me to keep it going, at least as often as I can. One of my blog buddies, JC, has been involved in competitive fitness but is taking time off from that to care for her daughter who has another type of kidney cancer called Rhabdoid Tumor. Have I mentioned that cancer sucks? Srsly.

Now we're home. Perhaps later this evening either Musical Daddy or I will take The Boy for a bike ride.

I like outside. It's pleasant. Even though it's hot. I get cabin fever pretty easily, and it appears that Tiny Guy has acquired that flaw as well. If it is a flaw at all--some people just like to keep moving! The Boy has taken on so many of Musical Daddy's character traits already. By default, I am mostly in charge of Tiny Guy because his whole world revolves around eating and staying comfortable. Mostly eating, which is my responsibility. His personality is tricky to assess, although it is easy to just say that he is fussy and stubborn...he's really too young for us to make that call because he is still so unsettled.

Anyhow, I'm going to go ahead and feed him now, even though he is currently sleeping. That way, he should be good through dinnertime.

Friday, August 14, 2009

World of Poo

Clearly Tiny Guy has really special poo that just wants to stick to everything. I think that it changes at some point. It has to. Unless even his bowel movements are stubborn to match the rest of him. In any case, I had to rewash about half of the diapers.

I don't remember ever having this issue with The Boy and his cloth dipes, but then, he wasn't in them until he was 2.5 months old, and perhaps the poo turns a little more into liquid. Right now it is (gross alert) yellowish colored grease balls.

Score one for Logical Mommy--both boys are asleep downstairs in the stroller. Tiny Guy was asleep when we left for our walk; The Boy only just fell asleep a few minutes ago. I am using this time to rest a bit and catch up on email/blog/message boards. Then I'm going to pull the clean diapers down off the line.

I am starting to think that Tiny Guy and I might have thrush, which is the reason why I'm not healing well and he is such a fussy nurser. I'm going to call my doctor, his doctor, and since I have an appointment on Monday anyway, I'll have her take a look and see. Again, add to the list of things I don't need.

Although who's to say what I need--maybe I'm supposed to be punished. Again and again and again. But sometimes it can come back around. It's funny how things happen. Here is Musical Daddy's take on the subject.

Thursday, August 13, 2009

Settling in for another long day

Blood and platelets Monday. Same today. White count also not much better. Trending slightly upward at least but still well under 1,000. Long boring day.

Hopefully we'll make it back up for chemo next Wednesday. I'm not too worried, at least in terms of white count. It will either happen or not...and the Neupogen actually works in terms of getting whites back up in time so let's hope it does the trick again.

Tiny Guy let me clean the kitchen pretty well this morning. Didn't do the floor yet. Saving that for this evening if/when he's mad.

Victory is mine!

The following things happened yesterday:

Both boys actually napped at the same time.

The Boy did not throw up at all yesterday and ate four meals.

I successfully nursed Tiny Guy in the sling while eating dinner and serving dinner to The Boy.


Right there, those are major events in our house. The second one needs no further explanation. The first one, if I may elaborate, went as follows: Tiny Guy was in the front carrier, where I put him while he was happy so that he would get used to being in it. He started to fuss. Musical Daddy recommended running the vacuum cleaner because it might calm him down. It did. So now I'll be running the vacuum more often, I suppose. He fell asleep in the carrier, and I was actually able to transfer him successfully into his bassinet.

With Tiny Guy in bed, I could concentrate on The Boy. He was also pretty tired. We read "The Monster At The End Of This Book" and he was getting sleepy, so I brought him into bed. It didn't take long before he, too, was asleep. Observe:



So I got to finish putting away laundry and relax a bit.

We went for a quick walk to the library, and we got home just about in time to avoid the big rainstorm.

The Boy napped again, with Daddy, and then on his own. I made dinner. Musical Daddy left for marching band rehearsal. I had dinner with The Boy and Tiny Guy was crying. I figured I'd put him in the sling to make him feel better but that I'd keep on eating. He was positioned just fine for nursing, and it seemed like he was hungry, so on he went. And it worked! He ate for nearly half an hour while I had hands free to do the things I needed to do. He is so cute.

I brought the boys to the end of the rehearsal, to show them off. The Boy enjoyed himself, looking at the instruments and conducting. Daddy took him while I went shopping at Trader Joe's with Tiny Guy. He started to scream in the car on the way home, so priority number one after getting home was to feed him again.

He also spent most of last night in his bassinet. He had a feeding at midnight and another at 4, then was up off and on from 5:30.

He is also quite a heavy wetter at night. We may need to start double-stuffing soon, or using only hemp inserts at night, because I'm not keen on waking up wet.

Tuesday, August 11, 2009

No-win situation

Unless everything is perfect, there is no way for me to put the two kids to bed at the same time. Tiny Guy doesn't have bedtime yet, which we will work on. The Boy has a decent bedtime routine with me, but it doesn't work as well with a fussy Tiny Guy who is nursing but needs to burp every three minutes.

Before this, it was a nice evening.

Sadly, I feel like Tiny Guy is just going to cry no matter what until he feels ready to eat nicely. So I had him in his bassinet, fussing on and off, some crying and some not, while I focused on The Boy. I even tried to talk The Boy into sleeping in his own room, which should work but doesn't when Tiny Guy is screaming nearby.

So back in our bed...on goes The Poetry Show after a call to Grandma asking how to pit the kids to bed. We got settled back in, and Tiny Guy was actually ready to nurse. Now, The Boy is asleep and Tiny Guy is close to it. I wonder if I could actually get him to sleep in his bassinet with no fuss.

Next task is to plot out home and hospital needs, and bedtime ideas. Anyone have bedtime ideas for little tiny people?

Wow--pictures

On Sunday evening, Elana and her family stopped by on their way to a wedding. They have twins. My living room was full of babies:





which was amusing. The Boy didn't feel like hanging out with the babies, so he and Daddy played outside while the twins had a changing and feeding stop. I hadn't met Elana before. Furthermore, we haven't really played much Jewish Geography, so I don't yet know who she knows (other than a cousin of mine on my father's side). Here we are:






And here is a photo of The Boy cleaning the floor:


Sunday, August 9, 2009

Weekend of Normal and Abnormal

Gross alert:

The past several days, The Boy has thrown up sometime around dinnertime. He has always been otherwise fine afterward and ready to eat lighter fare like applesauce or Rice Chex. Don't know what the deal is here. We are trying to be more careful with him and cutting him off after an approximate amount of food, because we have a feeling that there is something screwy with his ability to feel full. It used to be that he was very good at that, and if he wanted to eat a lot it was because he was very hungry, and it was fine. But then, we were pretty careful today and stuff just came up. Whole.

The Boy is going to the center tomorrow. He almost certainly will need platelets and probably will need red cells as well. Might be a long day.

Meanwhile, Tiny Guy has some odd swelling on his penis. Almost like a blister but it doesn't look much different from the skin. We called the pediatrician who told us to put some Bacitracin on it a few times and to call him tomorrow if it is still a problem. Which I'm sure it will be, so we'll take two cars and I'll probably be taking the little one to see the doctor. Good times.

End gross alert.

My parents were here from Friday at 1AM until Sunday at 2PM. We had a wonderful weekend. Usually when my mother is here, The Boy is in the hospital. This time, they actually got to have fun. Tiny Guy seems to like my dad a lot. One of his major jobs was to make sure that Tiny Guy got his walks and his outside time. Grandma was in charge of his naked time.

The thing about Tiny Guy and his raging--which was really not so bad today--is that sometimes it seems as though he forgets what he is mad about and he needs something to distract him from being mad. So if we put him down and take his pants off, or if we take him outside, sometimes he just gets over it. Of course, he is also hungry frequently.

Here's the other thing: there are always discussions about breastfeeding on demand and how nursing moms will just feed the kids at the first squawk. I don't know about your nursling, but mine won't eat successfully if he isn't hungry. The breast is not a mute button. He'll latch on and fitfitfit, even after getting out the burps, and I'll know that he isn't hungry and needs something else. Preferably someone else too--going for a walk with Daddy or Grandpa is usually just the ticket. Or, snuggling with Grandma.

Saturday evening, we went to a wedding. Musical Daddy used his new iPhone to take pictures and instantly post on Facebook. The iPhone was a present from my parents and his father. Also, my mom gave us money for a year of the data plan. Which, by the way, we get a discount on because we found a university discount plan on our phone.

It was hard to leave the boys, particularly Tiny Guy, for so long, but it was such a wonderful celebration. The food was just out of this world--lamb chops and sushi were the highlights of the cocktail hour. The meal itself was incredible. I even had a Drink--an appletini. Strong drink, tell you what. I had that drink after my second pumping.

By the way, at the risk of bragging, I brought home an entire pint of milk last night, from pumping. Tiny Guy didn't drink that much while I was gone, although he probably should have. He tolerates bottles, but it's as if he is never satisfied when he is given them. I don't have any idea how much he "should" be getting--I only think of it in terms of, does he want one side or both?

I don't even remember when the last time was that we got dressed up to go out.

We had a lot of fun. Oddly enough, the people that we picked to sit with at the cocktail hour were the same people at our assigned table during the reception. Even more odd, but certainly not a bad thing, was that the people were all at least one age level, if not two, older than us. As in, there were two couples with high school and college-aged kids, and they were the people we spent the most time with (and met at the Town Tavern to kill some time between the ceremony and reception), as well as the parents of the best man and two other couples. We danced, we talked, we ate drank and were merry. I was particularly amused by the best man's choreography skills.

In other news, I am pleased to report that my maternity clothing is in a box. I have some ways to go before I'm back to where I'd like to be, body-wise, but I'm not in a rush. Tiny Guy is taking care of most of it by nursing well and gently reminding me to take him for walks outside (and by "gently reminding" I mean screaming his head off), and the finishing touches will take place once I have the time to spend in the gym downstairs. I'm waiting on that until Musical Daddy finishes his dissertation.

But I am excited at the prospect of being a gym jock again.

Friday, August 7, 2009

And the icing on the cake...

Musical Daddy's birthday was yesterday, but we were waiting for my parents to come into town. We got a cake to be eaten today. My parents ordered a nice dinner for us, to be delivered from the Kosher store. I got a cake for him. The dinner was fantastic, and we were going to have cake a bit later.

He wasn't feeling marvelous all day anyway. To be expected at this point in the chemo cycle. The Boy had two colossal pukes today. When it happens, recently, he brings up a LOT of liquid. It's odd. It's as if he isn't even processing it. He has to be processing some liquid, because he's peeing. He had normal meals, though. And snacks. Some things made it through and some did not.

This evening, he fell down the stairs.

We live in a bi-level, so it was half a flight. Not as bad but not good. He was dragging a Boy-sized suitcase behind him, the gate wasn't closed, and he just went the wrong way.

Musical Daddy and my father took him to the hospital. Currently, they are on their way back. The Boy seemed to have no major injury except a knock on his head that made him mad but wasn't otherwise affecting him...as in, he was still watching TV and naming numbers, he didn't show any signs of trouble in his eyes. They were considering a CT scan if his platelets were really low but they weren't low enough for them to be as concerned. He didn't throw up after hitting his head either (not that there was much left in his stomach anyway). So he was very shaken up but is okay...nevertheless we'll be watching him very carefully.

We never did eat our cake. I think they are just getting home.

Snoring Symphony

My parents arrived at about 1AM. Tiny Guy woke up not long after and of course my mother swooped in and grabbed him.

I fed him, and then she changed him and took him again. I don't have any problem with Grandma getting some of those baby snuggles.

The Boy was up a few times but was easily resettled.

Now, at a bit after 7AM, I'm awake. Tiny Guy was awake but fell back asleep on my lap.

And everyone else is snoring. I guess Musical Daddy doesn't snore too much, but The Boy does to an extent. Not that you can hear it over the sawing that my parents are doing.

But as wonderful as they are, they can snore all they like.

I wish I were still sleeping but I'm...just not. Fortunately, with my parents being here, I don't have to worry about being able to grab a nap at some point. My father can take the boys for a walk (it's been over 2 decades since he's handled a double stroller). I figure that with there being 4 adults and 2 children in the house right now, someone can generally catch a nap.

Last night the boys and I went to see Musical Daddy direct his chorus at a gazebo concert. You'd think that taking two children to an outside show, where they don't really need to be quiet, would be easy, but it certainly was not. The Boy had a good time, except that he frequently wanted to try and go get Daddy, which of course he wasn't allowed to do. But he was able to play with the guys before the show and even go on the playground...which I really didn't want because his white count isn't fabulous but hand wipes are a good thing. Tiny Guy was hungry but didn't necessarily want to eat well. So he was mad for much of the evening. And eating frequently.

I saw one of the chorus teachers from school. He said that it's hard to believe that school is starting soon. I told him I wished I was coming back to school but circumstances being what they are, it wasn't happening. He didn't realize that I'm actually on leave and am slated to return in the fall of 2010. I think I will, too, even though The Boy will not quite be done with treatment. I'll need to burn through most of my sick days at the beginning of the schoolyear and will probably have to have other people help me with The Boy's appointments, as he is currently going to the center twice a week. Sometimes, when he goes for counts, we can tell that he is fine and doesn't need anything done to him. I guess the whole thing becomes so routine.

Anyhow, since Tiny Guy is asleep on my lap, I may just join him for a few minutes.

Thursday, August 6, 2009

How to get to Sesame Street

We decided to go for it and take the boys to Sesame Place yesterday. We were a little bit apprehensive about The Boy's physical well-being. He wasn't great about keeping his food or drink down at home...but since this was likely the last good counts day for awhile, we didn't want to waste it. We brought a few changes of clothes, the Clorox wipes, his SPF outfit (which is actually a swimsuit!) and whatever else you normally bring when you travel with little tiny kids.

We arrived at the park after 3, meaning that we paid the "twilight" price. This is the best thing to do when your kids are under 4 or so. Under 2 is free, so only Musical Daddy and I had to purchase tickets. We got an orange armband for The Boy, meaning that we didn't need to wait in line for anything. They are very kind to families with medical issues. Someone asked us about it, and my response was, "you really don't want an armband." I'd rather wait in line than "earn" the armband but we are dealt certain cards. Anyhow, there wasn't much that required waiting in line that we actually did, but it's good to know that the option is open for us, not to have to worry about it.

The Boy seems overwhelmed, but in a good way, at seeing his favorite "people" brought to life. He got a photo with Grover, Elmo, and Abby. Daddy got kisses from Elmo, as did Tiny Guy

The Boy rode on the carousel at the beginning and near the end of the visit, once with each of us. We would have all gone, and one of us would have sat on the bench with Tiny Guy, but we had to take pictures!

One of the highlights of the visit was the "Elmo's World" show. They took the format of "Elmo's World" from the end of Sesame Street and brought it to life, complete with Mr. Noodle's nephew Mr. Noodle. It had basically the same segments and was about the same length of time. In addition to being able to sit right up front for the show, Tiny Guy was the baby in the "Elmo will ask a baby" bit, and he even got the question right! The question was "How do you pretend to be a fish?" and he was making those motions with his mouth because he was hungry. Silly little man. The Boy was transfixed by the whole thing--Elmo's World is real??!???!!!

There were letters and numbers everywhere, of course.

We talked to a Jewish family that we saw, just to make conversation, and of course to ask them to daven (pray) for The Boy. Turns out, they are on their way home to Chicago and will be stopping in Pittsburgh today, so I told them to call my mom and ask for help finding food.

The parade was fantastic at the end of the evening. The Boy was interested in everything going on and even started dancing to the music, on his own. Of course, all of the major Muppet characters were there.

Tiny Guy was mostly too young to appreciate any of this, although he was interested in the stage lights during the Elmo's World show. He was fed several times during the trip. Fortunately, he is already getting faster at nursing, and I am getting more comfortable with him, so it was not such a big deal to just sit at the nearest bench and feed without any issue. I am discovering that part of his problem in being "fussy" is actually my problem and it will have to work itself out. For those in the know, it is called an overactive letdown and he just gulps too fast to try to get at all the milk. This happens less often if he is eating really frequently but he seems to want to space out his feedings a bit more (thank goodness for small favors) and more often than not only wants to take one side at a time. Most of the time at the park when I'd sit down to feed Tiny Guy, Daddy would have something fun to do with The Boy. Two of their meetings with characters (Grover and Zoe) coincided with Tiny Guy's need to feed.

The Boy also spent about 20 minutes in the gift shop at the end just looking at stuff.

I don't think that we'll get a chance to go back again this summer, but next summer, we'll have to plan several outings around "good counts" days. It's not incredibly far for us to get to Sesame Place and might be a nice meet-up spot as well.

Last night wasn't so great for The Boy--he woke up about as often as Tiny Guy did, clearly in some kind of pain. He got some Tylenol and perhaps felt better. This morning, he was up without any issue, ate a mini-bagel and drank some milk (people milk) and went off to the center. Seems like BP might be trending low and potassium might be high, because of the pains, so I held off on the Vasotec this morning. Don't know if The Boy needs blood or platelets today. I'm actually guessing that he doesn't need either but will need one or both on Monday. I am also really hoping that he stays reasonably healthy for this weekend, because my parents are coming to visit and I'd really like them to have fun with the kids.

I'm adjusting to having "kids" although it's a major change. It is true that going from having 1 to having 2 is the most difficult, at least from my perspective. Particularly considering that kid #1 is still a baby himself. I need to accept that while I am going to do my best to keep them both happy, occasionally one of them will have to wait for things, and it really depends on who needs what more.

Musical Daddy's birthday is today. He's very young for his age. He is getting some presents today, and some presents tomorrow.

Tuesday, August 4, 2009

phew! ...and sleep...

The Boy went to bed with little fanfare. Except that to accomplish that feat I had to leave Tiny Guy in his bed and he was NOT happy about that. There has to be a better way.

End result is that The Boy fell asleep at 8:30 while I was singing to him and nursing Tiny Guy. After getting off the phone with my mother, I put Tiny Guy back in his bed, asleep.

Then my mom called. She worries about me.

Unfortunately, in order to reach the phone, I ended up twisting my already-sore back. I took some Ibuprofen after talking with her (thank goodness that stuff is categorized as safe for nursing moms because Tylenol isn't going to cut it with this back pain). I'm not usually one for taking a bunch of medicine but I have to believe that this one will do the trick.

I still hear Tiny Guy fussing around in there. Not crying or even making much noise but I hear little grunts and I just know that he's awake.

"They" say that the best thing to do is to put babies to sleep in their own beds when they are drowsy but awake, so that they can fall asleep and wake up in the same place and the same state of being. I guess this issue doesn't really apply when your kid sleeps with you. Or when both do. I would just really like it if he'd be able to sleep in that little bassinet sometimes. For the space issues, and so that we didn't waste our money on the thing, if nothing else.

When Tiny Guy sleeps for a long stretch in the middle of the day, usually it is in his carseat, because he had fallen asleep on a walk or even in the car. I have never tried to move him from the carseat to his bed, because I don't want to ruin his nap. But he stays asleep for hours in that carseat. He stays asleep for a long time in the sling but can't really be put down because he wakes up once that happens.

Hmmm...I don't hear him, so maybe he is asleep after all...nope, I heard another little noise...

We are hoping to go on a major excursion tomorrow afternoon. We want to go to Sesame Place as an early birthday present for The Boy. And because it is probably his last good count day for awhile. If he is sick, though, we won't. As in, if he has another giant puke tomorrow or looks pasty or is acting not like himself, we'll have to do it another time. Such is life.

Family Fun

I've resigned myself to the fact that Tiny Guy is just going to cry all the time. He nurses whenever he wants but sometimes he is done, as he indicates by unlatching, pulling really far, or just screaming. Then he screams some more. A diaper change sometimes helps. Sometimes not.

Tonight at dinner The Boy puked up everything he had eaten. Fun stuff. Tiny Guy was already screaming. And of course continued to do so as I cleaned up the mess. The Boy wasn't happy either. He is now just fine. He wanted applesauce.

And Tiny Guy was fed again and was screaming until just now. It's a good thing The Boy has patience.

Monday, August 3, 2009

You'd think it could only get better

Tough morning at the center for counts. I figured that I'd take both boys, because that's what I'll be doing frequently, and Musical Daddy wanted to go into work.

I have two very high-needs children and it is pretty darned difficult to do for both at the same time. So I have to figure out ways to balance things out. For example:

Rule 1: never pick up The Boy while nursing Tiny Guy unless it is in the recliner at home. Picking him up anywhere else causes back pain. And further injury.

Rule 2: there are people at the center who would be perfectly willing to hold Tiny Guy for a bit, who is generally cranky in the morning. Let them.

Rule 3: don't feel guilty about the fact that the baby cries. It's louder to the person holding him than it is to anyone around me.

Rule 4: find a way to get the results of blood tests sooner. So we can leave sooner. And show up early for the same reason.

Rule 5: when possible, don't show up alone. Two boys and me means that I am outnumbered.

So now I'm sitting here with a sore back and hoping that Tiny Guy will sleep a little longer before waking up to eat.

Sunday, August 2, 2009

It's...quiet!



I have had almost no time to sit at the computer and update. It's been crazy in the house with two children who both need LOTS of things.

The Boy is okay. Still not back to his normal self. Granted, he hasn't been himself for the entire month of July. Or half of June, or much of May, or the end of April. While in the hospital this last time, he ate very little. Once he got home, he did decide to eat.

Yesterday's diet consisted of mostly fruit. Not great for the kid who has already been pooping too much.

Tiny Guy had his 1 month checkup, albeit a bit early. He is 11 pounds 1.5 ounces and 23 inches tall. Big dude. He is clearly eating well although I'm still having trouble off and on in the nursing department. Oddly enough, he has decided that he will sometimes take a bottle from me, and pumping is much less painful than a hungry little nursling on open wounds, so he's been having bottles today. We found the right bottle nipple for him, which is the same one that The Boy preferred as a little one. Has to be the rubber Nuk nipples. Not the clear silicone ones. But anyhow, a large chunk of the day like this will hopefully allow me to heal properly.

So much for the quiet...but just to summarize, everything is kinda okay for now.