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. :)
Friday, August 19, 2011
Friday, April 29, 2011
Endoscopy and other updates
Wow, already 10 days since Ricky's endoscopy. Anyway, it went well. We got a call the day before from the surgery center saying that we needed to get to LPCH at 1:15 pm. Shortly thereafter, we heard from the gastro doc's office that Ricky needed pre-procedure paperwork. Uhhh. Eek!!! So I found a lab that was going to be open late enough, and I rushed Ricky there to get his blood drawn.
We got to the hospital early for once, and went to the surgery center. After checking in, we went to an exam room and saw a parade of people for exams, paperwork, a review of Ricky's meds, and port access... A couple of nurses, the gastro doc (who would be doing the procedure), the anesthesiologist... And then finally it was time.
We walked upstairs to the ambulatory procedure unit. I got to go in and watch them put Ricky under. It was funny. The anesthesiologist pushed in Versed, which made Ricky all woozy and loopy. Then she pushed in this white stuff and his eyes rolled right back into his head and he was out. He was holding my hand still but he was OUT.
So I went out to the waiting room, plugged in my poor dying phone, and read my book for a while. He was done fairly quickly. And by the time I got to recovery he was already awake! Usually he takes a long time to wake up.
The doctor let me know that his endoscopy went fine. She did also do a short flexible sigmoidoscopy and she found a polyp in his colon. She even showed me a picture of it. She said she should it was likely just a "juvenile polyp" but that she had biopsied it. If it was just that, he would need a colonoscopy in a year to check on it. If it turned out to be cancerous, we would have to do something sooner, but she was pretty sure that wouldn't happen. Bad news about a colonoscopy is the preparation... Go-Lytely, etc. She figured he'd have to go into the hospital in advance for an NG tube to administer that stuff.
Yesterday I got a call from the doc saying that the biopsy had revealed that the polyp was actually just an ulcer. These are usually caused by constipation, that sort of thing. She emphasized again that he needs to be using his Miralax regularly and taking care of his body. Man up, be a big boy. I agreed and Ricky and I have been talking seriously about this. The good news? No colonoscopy in a year! Hooray! She does want to do an ultrasound soon because of Ricky's belly aches. Just to make sure he doesn't have kidney stones or gallstones going on in there.
More good news, Ricky was at school every single day this week, although one day I did have to pick him up early because he was so sleepy.
We also had his triennial IEP and he had extensive testing done. His eligibility designations were changed from Other Health Impaired (CF) and Severe Emotional Disturbance to OHI and Learning Disability. It was nice to hear that the SED is gone... But on the other hand this newly diagnosed learning disability (in mathematics) is sad to hear about. But at least now he can be getting some help with that. He was also found to be deficient in a few other areas, including reading comprehension.
It was also suggested that Ricky be considered for a course at another local high school in our district where he would learn life and job skills in addition to academic courses. I am going to go tour there soon. Though with us moving soon, and not knowing which district we'll end up in, who knows where he will end up? Ugh.
Ricky's dad had his blood drawn a few weeks ago for the duplication in the seventh chromosome. Finally! We waited a long time for the prison doctor to get off his butt and order the test. Soon we will know if Rick also carries that mutation. One way or another Ricky will eventually have other testing for other stuff like connective tissue disorders.
Also went back for the twice-yearly neuro appointment. Since he's been doing so well, I asked whether he could be taken off of the Topamax, since it makes him so dopey and sleepy. The neurologist agreed that we could start backing off slowly on it and to immediately call if he had seizure activity or other adverse events. So, yay. :)
Guess that is it for now. Goodnight!!!
We got to the hospital early for once, and went to the surgery center. After checking in, we went to an exam room and saw a parade of people for exams, paperwork, a review of Ricky's meds, and port access... A couple of nurses, the gastro doc (who would be doing the procedure), the anesthesiologist... And then finally it was time.
We walked upstairs to the ambulatory procedure unit. I got to go in and watch them put Ricky under. It was funny. The anesthesiologist pushed in Versed, which made Ricky all woozy and loopy. Then she pushed in this white stuff and his eyes rolled right back into his head and he was out. He was holding my hand still but he was OUT.
So I went out to the waiting room, plugged in my poor dying phone, and read my book for a while. He was done fairly quickly. And by the time I got to recovery he was already awake! Usually he takes a long time to wake up.
The doctor let me know that his endoscopy went fine. She did also do a short flexible sigmoidoscopy and she found a polyp in his colon. She even showed me a picture of it. She said she should it was likely just a "juvenile polyp" but that she had biopsied it. If it was just that, he would need a colonoscopy in a year to check on it. If it turned out to be cancerous, we would have to do something sooner, but she was pretty sure that wouldn't happen. Bad news about a colonoscopy is the preparation... Go-Lytely, etc. She figured he'd have to go into the hospital in advance for an NG tube to administer that stuff.
Yesterday I got a call from the doc saying that the biopsy had revealed that the polyp was actually just an ulcer. These are usually caused by constipation, that sort of thing. She emphasized again that he needs to be using his Miralax regularly and taking care of his body. Man up, be a big boy. I agreed and Ricky and I have been talking seriously about this. The good news? No colonoscopy in a year! Hooray! She does want to do an ultrasound soon because of Ricky's belly aches. Just to make sure he doesn't have kidney stones or gallstones going on in there.
More good news, Ricky was at school every single day this week, although one day I did have to pick him up early because he was so sleepy.
We also had his triennial IEP and he had extensive testing done. His eligibility designations were changed from Other Health Impaired (CF) and Severe Emotional Disturbance to OHI and Learning Disability. It was nice to hear that the SED is gone... But on the other hand this newly diagnosed learning disability (in mathematics) is sad to hear about. But at least now he can be getting some help with that. He was also found to be deficient in a few other areas, including reading comprehension.
It was also suggested that Ricky be considered for a course at another local high school in our district where he would learn life and job skills in addition to academic courses. I am going to go tour there soon. Though with us moving soon, and not knowing which district we'll end up in, who knows where he will end up? Ugh.
Ricky's dad had his blood drawn a few weeks ago for the duplication in the seventh chromosome. Finally! We waited a long time for the prison doctor to get off his butt and order the test. Soon we will know if Rick also carries that mutation. One way or another Ricky will eventually have other testing for other stuff like connective tissue disorders.
Also went back for the twice-yearly neuro appointment. Since he's been doing so well, I asked whether he could be taken off of the Topamax, since it makes him so dopey and sleepy. The neurologist agreed that we could start backing off slowly on it and to immediately call if he had seizure activity or other adverse events. So, yay. :)
Guess that is it for now. Goodnight!!!
Wednesday, April 20, 2011
Endoscopy
So, tomorrow Ricky is having an endoscopy. He's supposed to have these periodically to check on his reflux and stuff. It took a couple of days this week of hair-pulling bureacracy dealing to get it approved for payment by California Children's Services, but finally today when I called them, I was told it was approved yesterday.
A while later someone from the gastro doc's office called to say they'd left me a message yesterday about Ricky needing bloodwork before he could have the procedure. What? I had received no message from anyone and I had checked my voicemails just this morning. This ended up with them faxing a lab requisition over in a big hurry and me rushing to get Misty from preschool and take Ricky to get the blood drawn. It was drawn STAT and hopefully that was good enough. :P
The endoscopy is at 1:15 and he's not allowed to eat after... Well... Midnight. Now. And he can have clear liquids in the morning up until 11:30am. He's gonna be a very unhappy camper.
A while later someone from the gastro doc's office called to say they'd left me a message yesterday about Ricky needing bloodwork before he could have the procedure. What? I had received no message from anyone and I had checked my voicemails just this morning. This ended up with them faxing a lab requisition over in a big hurry and me rushing to get Misty from preschool and take Ricky to get the blood drawn. It was drawn STAT and hopefully that was good enough. :P
The endoscopy is at 1:15 and he's not allowed to eat after... Well... Midnight. Now. And he can have clear liquids in the morning up until 11:30am. He's gonna be a very unhappy camper.
Wednesday, April 13, 2011
So, how is Ricky doing? :)
Ricky is doing okay. He's had a few random bad days, being tired, not feeling well, etc. but he is actually doing great in general. School has been a struggle again (still?) -- getting him there and actually having him work. At his annual IEP it was decided that he is going to be attending half days. He leaves after four periods + lunch. But so far he's still struggling to get through the day. *sigh*
Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.
Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.
He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!
Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)
Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.
Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.
He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!
Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)
Friday, February 4, 2011
O2 and a couple of other things
I'll try to be quick but I wanted to give a little update...
Ricky had his sleep study a couple of weeks ago and it showed mild obstructive sleep apnea but the main issue was his oxygen percentages dropping into the 70s and 80s. Ultimately the CF doc ordered that he be on 1L of oxygen at night only. The concentrator was delivered on Wednesday but he's having trouble with it because he hates using a nasal cannula. He's had an aversion to those things, or anything up his nose, since he was 4 and had to have sinus flushes after sinus surgery. He has some sensory issues besides, and ultimately, though he has really tried, I am not sure this is going to work for him. I'm going to call the CF nurse and see if we might be able to get him a face mask and do it that way. Only problem with that is then we have to crank the O2 up to 5L. Sigh.
He has basically been doing a lot better otherwise. More time in school, fewer migraines. So that's good. And hey, he spent all of 2010 out of the hospital. Go Ricky!
He has a 1:1 aide in school now. I'm not sure yet what he thinks of that. Next up: An update of goals meeting in school, and in April his annual IEP meeting.
Ricky had his sleep study a couple of weeks ago and it showed mild obstructive sleep apnea but the main issue was his oxygen percentages dropping into the 70s and 80s. Ultimately the CF doc ordered that he be on 1L of oxygen at night only. The concentrator was delivered on Wednesday but he's having trouble with it because he hates using a nasal cannula. He's had an aversion to those things, or anything up his nose, since he was 4 and had to have sinus flushes after sinus surgery. He has some sensory issues besides, and ultimately, though he has really tried, I am not sure this is going to work for him. I'm going to call the CF nurse and see if we might be able to get him a face mask and do it that way. Only problem with that is then we have to crank the O2 up to 5L. Sigh.
He has basically been doing a lot better otherwise. More time in school, fewer migraines. So that's good. And hey, he spent all of 2010 out of the hospital. Go Ricky!
He has a 1:1 aide in school now. I'm not sure yet what he thinks of that. Next up: An update of goals meeting in school, and in April his annual IEP meeting.
Friday, January 21, 2011
sleep study
Ricky had his sleep study last week. It was fairly uneventful, aside from him having trouble getting to sleep due to all of the wires and leads all over him.
The results are supposed to have been back within a week but now they are telling us it could be another week or two. However, the preliminary results reflect mild sleep apnea and low oxygen saturation (90-95% when it should be 96%+). I guess this means we will see what the rest of the results are and then find out what the doctors want to do next.
In good news, last week plus this week he has only been out of school one day aside from the MLK holiday. This is a vast improvement... He has been out of one class or another 22 days already this school year! Ugh!
More news when I get it. :)
The results are supposed to have been back within a week but now they are telling us it could be another week or two. However, the preliminary results reflect mild sleep apnea and low oxygen saturation (90-95% when it should be 96%+). I guess this means we will see what the rest of the results are and then find out what the doctors want to do next.
In good news, last week plus this week he has only been out of school one day aside from the MLK holiday. This is a vast improvement... He has been out of one class or another 22 days already this school year! Ugh!
More news when I get it. :)
Tuesday, January 4, 2011
Close call
Ricky was pretty sick last night, wheezing and coughing. Today he was not much better even after lots of breathing treatments. I ended up getting him in to see the pulmonologist and though his O2 was down a little bit, his PFTs were pretty great, and his lungs sounded okay too. So we went home with prescriptions for Prednisone and Levaquin. Sounds like he just has some reactive airway stuff going on. Whew. Of course, tonight he started to spike a fever and had trouble sleeping... So we'll see what tomorrow holds. But at least he didn't get admitted.
Saturday, January 1, 2011
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 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.
Monday, November 8, 2010
Updates
Things have been busy for Ricky. He has had a number of absences from and short days at school due to dizzy spells, migraines, and fatigue. We still don't know what's going on with all of this. Migraines do explain some of the symptoms he has been having, but not all.
Ricky is getting a one-to-one aide at school because he's been having trouble adjusting to high school and its routines. He has been trying very hard in school, though, and his favorite class is 3D design.
Most recently, Ricky had some teeth pulled. He had four (adult) bicuspids that were crowding his mouth and making it so that his adult cuspids could not grow in. He had the right ones pulled several weeks ago, and last week he had the left ones pulled. The extraction on Wednesday of last week were very difficult, involving the dentist having to dig them out of his gums. Ricky got stitches and was in a lot of pain. He also developed a fever and we were scared he had some sort of infection. The dentist and pediatrician conferred and Ricky was started on Septra. By the weekend he was doing a lot better and he was back to school today, I am happy to say!
We've had some close shaves with bowel blockages lately, including an ER visit. He's back on Miralax now though and hopefully it will continue to help.
For Halloween, Ricky was a Ghostbuster. I'm not sure, but this might be the last time he trick-or-treats. I can't believe he's that old already! (He'll be 15 years old this month!)
Guess that's all the news for now. Thank you all for sending Ricky cards and letters. He still loves to get mail!
Sunday, September 19, 2010
Long overdue update (again)
I can't believe it's been almost three months since I last blogged here. So here's a thorough update on Ricky.
Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.
I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.
So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.
We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!
At the beach with friends.
At the Weird Al concert.
Ricky also spent a lot of time doing this:
I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...
So school started in late August.
First day of high school!
Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.
He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.
We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.
Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.
This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.
Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.
The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!
We go back to the pulmonologist and gastroenterologist in December.
Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.
So I guess that just about catches us up. I promise not to take so long before I update again!
Last I blogged, I had just taken Ricky to the dentist up at UCSF. He was supposed to get his teeth pulled several weeks after that.
I took him back in July and that day he fell asleep on the way to UCSF. I went to wake him up when we got there, and his nail beds and eyelids were blue! He got a little oxygen in the dental clinic and didn't end up having his teeth pulled. In fact, we ended up spending the afternoon and evening in the UCSF emergency room making sure he was okay.
So Ricky has been rescheduled and is going to get those teeth pulled next month. We are going to try for doing all three, under only local anesthesia. If that doesn't work for any reason he'll go under general anesthesia. Hope it all goes well.
We spent much of the summer doing summery things... Day trips to the beach, a Weird Al concert, a They Might Be Giants concert, trips to Gilroy Gardens. We had a lot of fun!
At the beach with friends.
At the Weird Al concert.
Ricky also spent a lot of time doing this:
I have been back and forth with the neurologist. Ricky has been to see him a couple of times and is going again this week. Ricky sleeps a lot, has had these absence-like seizures, and the dizzy spells combined with nausea and extreme tiredness, throughout the summer and into the fall. The neurologist offered Imitrex to help with the spells. Ricky's supposed to take them when he starts to feel rotten. We have used a pill once. It took away the headache and dizzy spell but knocked him out for hours. More on this farther down...
So school started in late August.
First day of high school!
Yeah, first day of high school. Where did my baby go? The first week was really rough. Ricky became pretty severely dehydrated on a couple of occasions. It was a really hot week. I took him in two flats of bottled water that's kept in his special education classroom for him to use as much as needed. I also bought him some Gatorade more recently, because water may not be enough.
He has also had some neurological issues... Sleeping or passing out and becoming unresponsive. Two times were serious enough that the school personnel called 911. The first occasion, I was able to rouse Ricky and he did not go to the hospital. On the second occasion, I was up at Stanford with Andrew at an appointment and the school nurse called to report that Ricky was experiencing nausea and dizziness. I thought it might be a migraine but I couldn't get there very quickly. As happened on the first occasion, an ambulance was called. The second occasion, I couldn't get there on time and he was transported to the local emergency room. A CT scan and blood tests were done and they couldn't find anything wrong.
We are going back to the neurologist this week and I am hoping we can get to the bottom of things. This is so frustrating. I am also meeting with people from the school this week to talk about a plan.
Ricky started the school year in mainstream 3D design (which was called crafts when I went there -- yes, to this same high school), mainstream Algebra, and mainstream PE. As of this Monday, he will be moving into a math class in his special education class, and adaptive PE. The Algebra class was way too fast paced for him, though he really did try to make it. He was apparently making a great effort. The PE class is made up of way too many students for Ricky to get the help/accommodations that he needs so he is transitioning into adaptive PE with another student in his special ed class. These sound like good solutions.
This month, Ricky saw the gastroenterologist and the pulmonologist. He has grown a bit taller and put on some weight -- he's 5'3 now and around 100-101 pounds. Tall and skinny. He does eat well so hopefully we will see more some improvement in his growth; his growth curve has flattened out and dropped within the past several years.
Pancrecarb, the digestive enzyme that Ricky has been taking for many years, was un-approved by the FDA this year -- apparently for no reason except for it being at the request of the Cystic Fibrosis Foundation. This left us with a quandary: What enzymes should he take? We ended up going with Creon, which he took for about five years starting with his diagnosis right after birth. Well, this time, in ways I will not enumerate here to save him some embarrassment (and since I've already Twittered about them), these Creon enzymes are not agreeing with him. He actually missed two days of school. The nutritionist at the CF clinic has offered up several possible solutions and so far they are not working. So we are hanging in there, hoping that at some point the FDA will re-approve Pancrecarb.
The pulmonology (CF clinic) appointment went great. Ricky's lungs are sounding and performing great. His growth, as mentioned, is going well. Hooray Ricky!
We go back to the pulmonologist and gastroenterologist in December.
Ricky's bipolar disorder is currently stable. He is due to go back to the psychiatrist. This summer he again attended camp for bipolar children and teens and he did great. He also made a new friend with whom we've had a couple of visits -- including a trip to the Palo Alto Airport Day last weekend... Ricky, Andrew, and Ricky's friend got to ride in a small plane, and had a blast! Here's a picture.
So I guess that just about catches us up. I promise not to take so long before I update again!
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