various things

Ricky continues to do very well in Kindergarten. We had a momentary panic yesterday with the after-school day care because they never received his folder (with doctor's forms, medication order, you know, all that important stuff) from the center that had him for the summer. Apparently no one had bothered to call the director at the other center, because when I called her she said, "Oh yeah, it's right here!" I volunteered to pick it up and run it over to the center he's at now. She couldn't run it over herself because of the required staff to child ratios. So I ran it over (in my oodles of spare time, don't you know) and it's all good now.

I got my final permanent crown put on yesterday after work. That's five I've gotten this year, and that's apparently all I need for now! Hooray! I actually have more now than my husband, the man with the bad teeth. It all comes from being a grinder/clencher... A subconscious habit I still catch myself doing -- drives me nuts!

Rick took Ricky up to Stanford for what we hoped would be the last segment of his cognitive testing -- he seems to wear out and not pay attention after awhile. It didn't get completed yet again and he'll have to go back for more.

Ricky's first day of kindergarten

It really went quite well, much to my relief! We had orientation and got to go to the classroom with him, where I had the opportunity to speak with his teacher (who is great) about him having CF, and gave her some literature. She'd had a student a long time ago with CF.

After a while, the teacher (Mrs. Makin) came over and asked me if there was anything she needed to know right away before she could read the literature. I just told her he'd been in the hospital a few weeks ago, could be as active as he felt like being, and needed pills. And that he might cough a little and go to the bathroom more often than other kids. We told Ricky to remind her about the pills today as it was hectic. He did, and it all went okay! He got his pills, had a great day, and said he had "a million of fun"!

Today we found out about a change in schedule. This is the first year the Kindergarten is 9 a.m. to 1:30 p.m. (used to be 8:30 a.m. till 12:30 I think) So he eats lunch in his classroom. And the days I work, he goes to after school day care that is on campus. That will start tomorrow.

Ricky's in the hospital

Gonna make this quick...

Ricky is in the hospital.

Friday night he threw up all night and ran a temperature most of Saturday. We figured it was the stomach flu, and he was fine by Saturday afternoon. Yesterday he started having severe abdominal pain in and so we went to our local hospital (he was screaming in pain and I didn't want to take any chances) at about 3:30 p.m. They did a chest x-ray and an abdominal x-ray and decided that though he was full of stool (which might possibly mean a bowel blockage, which can happen with CF), he also seemed to have pneumonia in two lobes.

He started running a rather high temperature which wasn't brought down even with Tylenol. He slept off and on and was really being good, considering everything. He was started on an IV because his heart rate was fast, indicating possible dehydration.

Eventually we got the pediatrician in there, and he decided (with me) that Ricky should be transferred to Packard Children's Hospital to be treated (that's where he goes for CF treatment, and the local hospital doesn't know much about CF anyhow). FINALLY at 12:30 a.m. this morning we got the ambulance after the docs and charge nurse went back and forth about whether we'd be allowed to transfer him ourselves and finally decided against it. By this time Ricky had fallen deep asleep and ended up being asleep for the whole ambulance ride!

We got here and were finally checked in by 3 a.m. He was started on ceftazidime (antibiotic) by IV. This morning he had x-rays and they were talking enema, and then he pooped (pooped again this evening). The abdominal x-ray apparently looked much better, and I FINALLY found out that the chest x-ray wasn't bad either. So depending on how he does tonight we *might* go home tomorrow. Woo hoo!

Just wanted to update everyone as to why I've been rather absent. I'm going to take a while to catch up on email but I will be able to do it eventually!

Talk to you all later!

Note: Ricky came home on August 10.

on genetic testing

I don't know what the big fuss is all about. Of course it is beneficial to be tested for genetic diseases. Especially since nowadays you can find out if you are going to have heart disease or breast cancer (for instance) in the future! Of course this is a good thing! Many deaths can be prevented.

My sons have both been tested for cystic fibrosis. My older son was born with medical problems leading to a tentative suggestion of CF, so he was given a genetic blood test when he was under a week old. This test was positive. In fact, we found out what genomes he carried (DeltaF508 from my husband, and Q493x from me, in case you're wondering -- which you're probably not, but oh well), which helped us figure out what the course of his disease might be, and how to treat his disease. This is so valuable!

My younger son was tested via amniocentesis when I was about four months pregnant. My husband and I wanted him either way; if we hadn't, we wouldn't have gambled on another baby. Andy had a 25% chance of having cystic fibrosis; a 25% chance of being completely unaffected by the gene; and a 50% chance of being a carrier (like my husband and myself). As it turned out (3 aggravating weeks later), he was totally unaffected, much to our relief. And let me say that having a "normal" baby was really weird for us!

Some may ask, why bother having him tested in utero (and risking the amniocentesis) if we wanted him either way? Well, the answer is this... Ricky had problems in utero (a ruptured) bowel. So we wanted to know if this baby would have CF so we could look out for that kind of thing (extra ultrasounds, etc.). So that's why we took the risk.

And I guess that all explains why I feel that genetic testing is so important. I don't know what to say for the folks who have abortions after finding out their child is "defective". I don't happen to agree with that, but I also don't want to open up a huge discussion about abortion here. Abortion has its purposes, I believe, but I don't think that weeding out "undesirable" children is one of them.

That's about all I have to say about that. :)

Ricky has been doing very well as far as his sinuses are concerned. When he had his sinus surgery a year ago, the ENT said he'd probably need another one after a year, but his sinuses right now look GREAT so it looks like that won't be the case! Hooray!

In February he cultured a nasty bug in his lungs, stenotrophomonas maltophilia, but we immediately countered it with inhaled and oral antibiotics and hope to have it beat. I guess we'll find out after we get him cultured a month from now. Because of the bug, he's developing a chronic cough for the first time in his life. Most CFers have a chronic cough so I guess it's just Ricky's time.

Ricky's behavior problems got so bad back in November (before his hospitalization) that I took him to a child psychiatrist. We've been following with the doc till now. Ricky's trying play therapy with the psychiatrist and after the last visit three weeks ago we started him on Paxil, an antidepressant, because we think his behavior stems from depression over his chronic illness (by the way, any other parents with experience in this area, MACS or other, I'd love to hear from you). Well, though it made him a generally happier person, Paxil got him ripping his hair out in chunks from his head and chewing on his fingernails and cuticle like mad. It seemed to actually be activating his bad behavior too (I swear he is going to get kicked out of day care)! So he was weaned off of it this week.

We saw the psychiatrist yesterday and he decided we should try Celexa, another SSRI class of antidepressant. He is double-checking on possible drug interactions, because Ricky is on so many other drugs, and then he will call it in to the pharmacy. If that doesn't work, he's considering Concerta, an ADD drug/Ritalin derivative, because Ricky definitely is active, busy, and destructive, which can be caused by depression, not just ADD. So even if he is not ADD he might still benefit from it. The big problem with any Ritalin drug though is that it will supress appetite, which is the last thing my skinny boy, or any child with CF, needs. I checked the the GI doc and she is okay with it if the psychiatrist feels it would be valuable for him. We'll just have to monitor his weight extra carefully. But we are getting ahead of ourselves because we are all set to try Celexa first!

Andy (little brother) had his third birthday on Sunday, and is doing just great. Driving his brother crazy, but then that's his job! So there's a little update for you.

Icky news (post from 2001)

I finally talked to Ricky's NP at the CF clinic and he cultured two bugs last
week.

(1) Serratia which I guess we've figured out isn't dangerous at all.

(2) Stenotrophamonas Maltophilia (sp?) which really knocked the wind out of
me.

Just when we were starting to do so well, now this. I guess we can't ever do
WELL with this disease, we just have to keep getting knocked for a loop.

What is cystic fibrosis?

Ricky doing his vest 01-10-2002
Originally uploaded by Beckerbuns

Now I will educate you about CF!

Cystic fibrosis is a lung and digestive disorder that is passed on by DNA... Meaning Rick and I are each carriers, therefore each pregnancy we have together has a 25% chance of ending up with the child having cystic fibrosis, and 50% chance of being a carrier (Andy is in the other remote possibility of 25%, he is not a carrier nor does he have the disease, thank goodness).

Kids with CF have lots of problems, but the main ones are:

1. digestive - they cannot digest fat, or absorb fat soluble vitamins, without the aid of a digestive enzyme pill

2. lung - they have frequent lung infections and pneumonias

Ricky also has CF related sinus infections, bronchiectasis (inflamed bronchus tubes in the lungs), and gastroesophageal reflux disease, all of which can stem from CF. He also has a lazy eye, farsightedness, and possibly learning disabilities, which do not stem from CF.

He requires hospitalization from time to time for his pneumonia (twice last year) and has had sinus surgery once (also last year). He also gets breathing treatments twice a day and takes about 10 different medications on a daily (sometimes twice daily) basis, not to mention digestive enzymes at each meal.

Since he is so young, I do have to worry about his therapies and medications and general health... I'm hoping as he gets older and takes more responsibility for these things himself, I won't have to worry as much. But for now the problem remains! Since I am his mommy (and Daddy leaves it to me to handle absolutely everything) it is my sole responsibility for now.

Good links about CF:

Cystic Fibrosis Research, Inc.
Cystic Fibrosis Foundation
CysticFibrosis.com
Cystic-L (the email list I belong to)

school evaluation

Ricky August 2000
Originally uploaded by Beckerbuns

Ricky's going to be tested for learning disabilities, ADHD, etc. on January 31. I have mixed feelings about this. I mean, just because a kid is distractible doesn't mean he has ADHD.

The reason I self-referred him to the school district for this is that he has serious behavior problems. We're hoping to isolate the problem and get him registered for the right school (he's starting Kindergarten this fall). If he has ADHD or a learning disability he'll have to go to the school that has special ed, and we have to register for kindergarten in February. So the time to get this handled is now.

Isn't it weird to want him to do well, when wanting to find out the right answers might mean that he won't do well?

A parent's quandary, I guess.

Today I took the boys to the Children's Discovery Museum. I guess it's my way of spending time with them while at the same time avoiding housework. This place is an enormous mess.

Anyway, we had lots of fun there. My favorite part is the tennis ball display, where you can use cranks to manipulate tennis balls in a great big machine. Luckily the boys like it too; we spent about an hour fiddling around with it. A couple of times while we were at the museum one or the other of the boys ran off away from me; I'm trying to make sure they know that's not o.k. I'm so scared of losing one of them.

The last thing we did was visit the Arthur display. One of the rooms in there is a library, where kids can pretend to scan the books. Ricky started grabbing books from other kids and I steered him away from there. Then he found a felt board where a little girl was making a picture and pulled all of the little felt figures off and threw them on the floor, making her cry. At this point I told him, "Okay, we're out of here" and we left.

All the way to the light rail, all the way home on the light rail, and all the way to the car from the light rail station he cried and hollered and pouted about having to leave.

It occurred to me that maybe this behavior problem we're trying to get diagnosed means that he just doesn't know when he's doing something bad. Maybe he is not observant enough of what's going on around him to notice how is actions affect other people. Does that make any sense?

Anyway all I could do was put my arm around him and make sympathetic sounds; but I also made sure he knew why we had to leave.

We came home and I got Andy down for his nap while Ricky watched the end of Star Wars, which he started watching this morning. I wasn't much younger than him when I saw it for the first time, in 1977, at the movie theater.

I was an only child

Family portrait
Originally uploaded by Beckerbuns

When I was growing up, I always longed for a sibling, preferably a boy since I was such a tomboy myself. My parents tried to have another baby when I was around 10, but I guess it wasn't meant to be because they never did conceive again.

Being an only child, I grew up really fast. I could go to parties with my parents and hold intelligent conversations with adults with no problems.

I was a little lonely. When my school friends were all busy, I was bored with no one to play with. However, I developed a terrific imagination from all this solo play. I had a massive collection of Star Wars action figures and playsets, and built elaborate worlds with them, not having to worry about a little brother or sister knocking them down or messing them up.

I had trouble with teasing. I didn't know how to react to it. My two boy cousins (brothers) used to tease me mercilessly, and I'd just cry and run away. I didn't know then that the best way to discourage them would have been to just ignore them or joke back at them. How would I know? I had no experience! I figured it out later on and they were disappointed, I think, to have the wind taken out of their sails.

As I grew older, I decided I wanted a huge family -- at least six kids. That way no one would ever be in this position that I was in. After I got to adulthood I realized that would probably not be possible, at least not in California, Silicon Valley to be more specific. It's just too expensive here to raise a regular-sized family, let alone a large family!

When Ricky was born and diagnosed with the genetic disease cystic fibrosis, I could have decided not to have any more children because of the CF (I know lots of parents who have made that decision), but I didn't. I was determined that Ricky would not be an only child. We conceived Andy when Ricky was about 1-1/2, and waited on pins and needles for his amniocentesis results (we were going to keep him either way, but it was still nerve-wracking!).

Andy's fine, and our family is now complete. The boys play together, tease each other (and let it roll of their backs), laugh together, throw food at each other, and do all the things that brothers do. In a way it makes me wish that I'd had a sibling or two, but I know that I am a better person, in my own way, for having been an only child.