Upon reflection...

It has been a while since I posted to this blog.  I need to go back and post updates from his two hospitalizations this year.

The good news is that Ricky has been doing pretty well.  He went to live with my mom at the end of November of last year.  He has continued to be very compliant with his medications and treatments.  He switched to the school near my mom's house and the program there has been amazing and wonderful for him, including a summer where he attended more school and participated in a workability program where he learned job skills.

Last week I took Ricky for his senior pictures, and today I took him to pick up his schedule for school.  It hit me.  His senior year.  He's a senior in high school!

When Ricky was born, the average life expectancy for people with CF was 26.  It's now late 30s.  Had Ricky had been born in the 80s, chances are he would have died by now.  So for me, seeing him entering his senior year and reaching his 18th birthday is monumental.

While we still have eight (at last count) specialists to see on a regular basis, an IEP a half inch thick, and a hospitalization at least once a year, I consider us incredibly lucky.  There are parents out there who have recently lost their children around Ricky's age or younger to cystic fibrosis, even in this time of medical advancement.  My heart is heavy every time I hear about another child or adult lost to CF.  In time this battle for a cure will be won.  I hope it is in time to save Ricky and others whose parents and families and friends are fighting to keep them alive.

And on that sobering note, here's my boy in his ASB card picture, taken today.  By the way, as of today's visit to the kidney doctor, he is 6' and 167 pounds.  Not bad for a scrawny 33 week premie, eh?

Long overdue update

I just realized how long it's been since I updated. Ack! Sorry about that. The good thing is... No news really is good news.

We moved in May due to my lease ending and our desire to move in with my friend Liz and her son Kevin. We now live in the Rosegarden area of San Jose, in a charming little 98 year old farmhouse on a 10,000 square foot lot. Our rent is actually less because of the house sharing arrangement.

Ricky started school (he's a sophomore) on Monday the 15th.

His health has been great. He has finally started growing like crazy (several inches this year alone) and I'd bet he'll pass me up in height by the end of the year. After not growing for several years! Yay Ricky! He has been out of the hospital for coming up on two years now. Yay! We have his genetics appointment later this month where he will finally be tested for Ehlers-Danlos.

That is it for now and I'll try to be better about updating. :)

quick update

Just a quick update for the new year.

Ricky has had a few doctor appointments recently and I FINALLY got the neurology nurse and pulmonology nurse to confer and get Ricky a sleep study. For Pete's sake, the kid has been missing more days of school than he has been in, with being sleepy, dizzy, etc. So on January 11 he's spending the night at PEC (the peds unit Dave used to manage, ironically, though they are in a fancy new facility now) for a sleep study and hopefully we will get some answers. He has been having migraines too, but at least there is Imitrex for that. There is nothing we have found so far that helps with the other stuff.

Good news... He grew a few inches in 2010! Could this mean that he's finally entering puberty? Time will tell! We see the endocrinologist in early 2011 and hopefully we'll get some answers.

Ricky's week

Ricky went to the pulmonologist this week for a CF checkup. His O2 saturation was down just slightly, he'd grown a tiny bit (but his growth curve is still flat), and his spirometry looked great. He's still got the end of the sinus infection. He's going to start on Periactin again. It's supposed to make him have a bigger appetite. He was on it for a couple of years a while back and it never seemed to do anything, but we'll see what happens this time.

A couple of nights ago, Ricky had what was clear to me to be an absence seizure. He was sitting up watching TV and doing his breathing treatments, and I went over to give him his next nebulizer. He didn't respond to me. Then I noticed that his eyes were open but rolled back in his head. I thought maybe he'd gone to sleep but it didn't make sense because he was sitting straight up. Plus, he had had a 5-6 hour nap that day and by rights, should not have been sleepy even though it was 10 at night. About a minute later, he came out of it and asked Andrew and me what had happened. He was pretty confused and it was clear now that he had *not* been sleeping.

I called the neurologist's nurse yesterday (well, Thursday) to report the seizure. She has yet to call me back -- which seems pretty irresponsible. I want to know what happens next. Change meds? EEG again? Guess we'll wait and see.

The graduate

IMG_5668_cropped
Originally uploaded by Beckerbuns

Thursday of last week, Ricky graduated from middle school! It has been a long, hard road, but he made it. He graduated with 300 classmates. On Saturday we had a graduation party at the local pizza joint.

Last week, Ricky also visited the gastroenterologist. He has grown a little but his weight is basically the same and his growth curve has flattened out. His lungs sounded great, though, even though he has been battling a sinus infection.

Tomorrow it's back to the pulmonologist. Hopefully all is well. Next month he has summer school and bipolar camp.

Sharing Ricky's artwork + update

Ricky was assigned, apparently, to draw a picture of himself as a pirate lumberjack and then write a story to go with it. I was impressed with the results, especially since he hates to write. So I scanned the little project. :)


He says that purple stuff on the chest is chest hair. Arrr!



A few updates...

Yesterday I heard from the endocrinologist. Ricky's bone age x-ray came out in the low end of normal range. In other words, his bones are slightly on the young side but not out of the ordinary.

Today I made appointments for Ricky with the gastroenterologist and psychiatrist, both of which he is due to see for follow-up. I also finally got a call from the office of the new neurologist and I got an appointment for Ricky to see him. All of these appointments are in April.

Ricky sees the ENT on Monday.

Ricky update

Well, how about a long overdue update on Ricky? I've been going a little crazy at home and just haven't had time to update.

Last week I took Ricky to the audiologist for an evaluation of his hearing. With all the dizziness he's been having, there is a possibility that he has vestibular damage. The audiology tests would be able to determine the possibility of some, but not all, types of vestibular damage.

The tests he had that day were fine. The audiologist strongly recommended that I take Ricky to see the ENT and the neurologist to rule out other problems. I have already made the ENT appointment for March 9 and I'm working out a referral to a new neurologist (Ricky's doesn't take his new insurance) and I'll get him an appointment for that as soon as possible.

This week, Ricky had a follow-up appointment with the endocrinology clinic to follow up on his slow growth. His growth curve is still dipping with no good explanation (he is not sick enough from his CF to cause this, for one thing) and his hormone and other blood levels are borderline low. The decision was made to do a bone age scan of his hand to see how his bone age compares to his growth. We should have that information soon. And then the plan will be to wait another 4 months and go back in to see how his growth has progressed.

Did I mention we had a two hour wait for the x-ray to be done? Yeah. And then the x-ray took all of 30 seconds! It was a good thing that Misty wasn't with us because she would have been going crazy!

Ricky had been feeling poorly the past few days, so I managed to get him into the CF clinic after the x-ray. It turned out that he is fine... His spirometry was stellar and his lungs sounded clean. "Just" reactive airways. Well that's a relief!

Ricky news

I will get back to reporting on our San Francisco trip tomorrow, but for now I wanted to give a couple of updates on Ricky.

Today I was actually home with Andrew, who was sick with a sore throat and cough (which hopefully the other two kids and I do not catch). I hated to miss work, but it was also nice to get a few things done around the house and run some errands.

In the afternoon as I was clipping coupons, I got a call from the nurse at the CF clinic. She said, "I'm calling you about Ricky's sputum culture results..." and I felt my heart drop. They never call unless it's bad news. I was envisioning the really bad bugs... cepacia, MRSA. But thank goodness, once I caught my breath, I found out that it was neither of those. The news is that he is still culturing the stenotrophomonas maltophilia that he grew the last time, and also that he's showing pseudomonas again. This is one he has had off and on since he was 2 (but went a number of years without culturing it). Now, however, he is culturing two strains. One of them is most prevalent, and there is a secondary strain that showed just a little spot. They are not mucoid. The good news is that all three of these bugs are sensitive to multiple drugs. The best one is Ciprofloxacin, but Ricky gets a nasty arthritic reaction to Cipro, so unfortunately we can't use it. The nurse called in a prescription for Septra (double strength -- that'll be fun for his intestines) and instructed me to put him back on the TOBI inhaled antibiotic, which I'd already called in a refill for since he was supposed to start it a while back. I'd put it off because of the constant change in insurance. After he has been off the TOBI for a week, we go back in for another sputum culture. Keeping our fingers crossed!

Later in the afternoon, when I was waiting for the boys at separate appointments at the same place, the endocrinologist finally called me back. I had called Tuesday late in the day and again this morning. Today I was told that they were not in today. Huh. I had asked the CF nurse to look at the numbers for me, and she told me that they were all within normal limits. I knew that wasn't usually the whole story so I waited to hear from the endocrinology fellow. When she called, she informed me that his thyroid levels are fine. His prolactin hormone level is fine (a high level could have meant a problem with the thyroid, I believe). His growth hormone and testosterone are on the low end of normal. This means he is definitely not in puberty. I told her I'd been unable to find the CD of the MRI images (which is making me nuts, believe me). She said they'd have no problem doing another MRI when he goes back in a few months if his levels are still not rising. She also said that they wait til boys turn 14 before they worry too much about puberty being late (that's a year from now). At that time they would consider testosterone therapy.

So, whew. That's a lot of news for one day. The good news is that he's not sick at the moment (at least not that we can see! the lungs are another story). He is doing okay in school (not the most spectacular report card last week, but he's trying harder now). And he's a happy, smart, fun kid. :)

Full of news...

Ricky was home again today. He was lethargic, but seemed better than he was yesterday. MUCH better. So I am hoping against hope that he can go to school tomorrow since I have five days of work to do in two days. (Ack!)

This afternoon, I hauled all three kids up to Stanford for Ricky's every-six-months (I guess that would be twice-yearly) appointment with the endocrinology clinic. They've been monitoring him for CF-related diabetes, which is a sort of a hybrid of types 1 and 2 that happens in most people with CF eventually; basically the pancreas gets clogged up with that thick CF mucus and stops secreting insulin. But with CF, sometimes the insulin gets through once in a while so basically the pancreas is just imperfect. It is complicated because people with CF really shouldn't limit their calories; yet of course if they have diabetes they need to.

Anyway, Ricky's meter showed very few surprises, and the endocrinologist was unconcerned about it. He had one very low number, but this was not surprising because he had been fasting. And he had one pretty high number (around 200) but he had just eaten.

But... The big concern was Ricky's growth. As I've documented, he has grown very little in about three years... Most noticeably in the past two years his growth curves, in both height and weight, have flattened out. Before that, his height was increasing at least. Something I didn't know, is that boys' growth curves do flatten out for a period of time right before they enter puberty. 2-3 years is a bit long for that, but we could be seeing something like that.

Ricky had his physical exam and, I'll be delicate here and respect his privacy, was found to have one sign of possibly entering puberty soon, and one other questionable sign. I did mention his recent need for deodorant (Andrew and him both recently needed to start using it, though they frequently forget).

His stat blood tests today were normal. The resident and attending decided to ask for a bunch of blood tests to be run along with his CF ones next month, including thyroid function, growth hormone, etc. They want to have the Stanford neurologist look at Ricky's MRI from February 2007 to see if there are any clues there, so I am going to send them a copy of the CD ASAP. We go back to the endocrine clinic in four months, and if he has not grown by then they'll start talking about a more specific MRI of his pituitary gland and possibly supplemental growth hormone. I just don't want to wait too long for the growth hormone, but I also know that these doctors know what they are doing.

Oh, this is also significant... A lot of males with CF have stunted growth because of their CF exacerbations, but it is not felt that this is a problem with Ricky as he has always been at least in the 50th percentile for height and his illness has not seemed to affect that. And he has not been a lot sicker until the past year or so. The doctors are of the opinion that this growth stunting does not have to do with his CF. That was interesting to hear.

The resident also asked if he had had genetic testing. Doctors often ask that about Ricky because of a few unique things about him -- he is slender and double-jointed, and has thin, velvety skin. She also measured his arm span versus height, which either has something to do with puberty (I should Google that) or meant she was checking for Marfan's. Hmm. She did say the results were normal.

That's about it for now... Just wanted to document it before I forget!