It's probably a minor thing, who knows? But Ricky's dizziness has continued. He has had this going on for at least a year and no one has been able to figure out why. He gets so dizzy that he has to sit down. Sometimes it's accompanied by a headache. Sitting down and putting his head down sometimes helps it; sometimes it doesn't. He has had every possible blood test from the pulmonlogist, gastroenterologist, psychiatrist, and endocrinologist. When he was inpatient, they fiddled with some of his meds. The latest thing is that the neurologist upped his seizure med just in case these "spells" were complex partial seizures.
But nothing has worked. The med changes have not accomplished anything. I'm starting to wonder if he's having vestibular issues from the TOBI (inhaled antibiotic) that he takes. To me, the spells he is having don't sound like vertigo or vestibular issues, but it's hard to tell because maybe he's just not describing them accurately. I often test his blood sugar when this happens. Once or twice his blood sugar has been low, but usually it's spot-on normal.
We are seeing the psychiatrist on Monday, and the ophthamologist on Wednesday. I'll bring it up to both of them. Next step will be the pulmonologist again to see if she has any ideas. It's starting to scare me, and it definitely bothers him.
Sunday, September 21, 2008
Thursday, September 18, 2008
a visit to the gastroenterologist
Today we went to the gastroenterologist. Ricky gained several pounds! He is up over 90 pounds again! Go Ricky! However, he is the same height (and has been for three years now). So we discussed that a little bit. She felt a good bit of poop in his bowel, which has been a chronic problem, and encouraged me to give him mag citrate and an enema this weekend. Pooooor Ricky. But we don't want it to get worse because that can lead to a serious bowel obstruction, hospitalization, and even surgery. :(
It has also been four years since he had a DEXA scan (bone scan to check to make sure he is absorbing enough calcium and that the steroids he takes periodically haven't affected his bones) so he needs to do that, but they're not going to be able to put in the authorization until after we get the kids onto Healthy Families (a form of state-funded health insurance), since the kids lose their insurance at the end of this month.
I also told the doc about the divorce, and she seemed sorry to hear it. She has been Ricky's GI doc since he was in the NICU, so she has followed the whole darn saga of the past almost-13 years.
She gave me a lab slip for Ricky to get a bunch of blood tests. We'll have to try to do that before the end of the month.
We go back to see her in 3 months.
It has also been four years since he had a DEXA scan (bone scan to check to make sure he is absorbing enough calcium and that the steroids he takes periodically haven't affected his bones) so he needs to do that, but they're not going to be able to put in the authorization until after we get the kids onto Healthy Families (a form of state-funded health insurance), since the kids lose their insurance at the end of this month.
I also told the doc about the divorce, and she seemed sorry to hear it. She has been Ricky's GI doc since he was in the NICU, so she has followed the whole darn saga of the past almost-13 years.
She gave me a lab slip for Ricky to get a bunch of blood tests. We'll have to try to do that before the end of the month.
We go back to see her in 3 months.
Saturday, August 30, 2008
Update
Hi everyone! I'm happy to report that Ricky has been doing much better since his course of IVs followed by oral antibiotics in July. He did develop a sinus infection this week, but it seems to be clearing up with the help of oral antibiotics.
Earlier this month, Ricky went to bipolar camp and had a great time. This time, he even tried the rock-climbing wall, zip line, and ropes course -- which he'd been afraid to do in previous years! Everyone at the camp had so many great things to say about him -- it was quite gratifying.
Ricky and his brother both started school this week and are settling back into the routine and doing well. Ricky is now in seventh grade (!) and has one period of elective (ceramics), a period of PE, and the rest of the day in the special day class. He loves every minute of it -- go figure! Can you believe he'll be 13 in November? A teenager!
I'm doing okay as a single mom. The kids don't seem to mind it, even though I spend part of every day running around like the proverbial chicken. Misty is having her first overnight visit with her dad this weekend, and she seemed excited about it. Guess we will see how it goes!
Thank you all for your continued support!
Earlier this month, Ricky went to bipolar camp and had a great time. This time, he even tried the rock-climbing wall, zip line, and ropes course -- which he'd been afraid to do in previous years! Everyone at the camp had so many great things to say about him -- it was quite gratifying.
Ricky and his brother both started school this week and are settling back into the routine and doing well. Ricky is now in seventh grade (!) and has one period of elective (ceramics), a period of PE, and the rest of the day in the special day class. He loves every minute of it -- go figure! Can you believe he'll be 13 in November? A teenager!
I'm doing okay as a single mom. The kids don't seem to mind it, even though I spend part of every day running around like the proverbial chicken. Misty is having her first overnight visit with her dad this weekend, and she seemed excited about it. Guess we will see how it goes!
Thank you all for your continued support!
Monday, August 25, 2008
Ricky's first day of school
Today was the boys' first day of school and everything is going fine so far! Ricky has the same teacher in the same SDC class that he started in the spring, and the same kids are in there, so there were no surprises. I have high hopes for him this year! His first elective is ceramics and he will be in PE as well (this is something new that he started right near the end of the last school year). Yay Ricky!
Sunday, August 17, 2008
vacation
Ricky, as it turned out, was on IV antibiotics at home for three weeks followed by two weeks of a very powerful oral antibiotic, Rifampin, which threw his bipolar disorder out of whack. So I had to up some of his Seroquel (bipolar med) to even him out.
At the end of July we went to San Diego with Dave's family. We went to the beach a few times and also to Sea World on two different days, and it was a great time. We really needed the time away after Ricky being sick and the other thing that is going on...
This is the first time I have posted this here -- Dave and I are getting divorced. He moved out on August 9. The kids and I are doing all right. Misty had her first visit with him today, just a few hours, and did fine. Somehow we'll make it on our own. We have a lot of support from my mom and from friends.
At the end of July we went to San Diego with Dave's family. We went to the beach a few times and also to Sea World on two different days, and it was a great time. We really needed the time away after Ricky being sick and the other thing that is going on...
This is the first time I have posted this here -- Dave and I are getting divorced. He moved out on August 9. The kids and I are doing all right. Misty had her first visit with him today, just a few hours, and did fine. Somehow we'll make it on our own. We have a lot of support from my mom and from friends.
Wednesday, July 2, 2008
Making use of the port for the first time!
Ricky went downhill fast this week, from a bad cough to a pneumonia in his lower left lung in just two days. The hospital had no available beds, and he has a medi-port, so he got to start on IV antibiotics at home today. So far it is going great! He has to sleep on the couch in the evening because the gravity infusion can't go uphill to his Ikea loft bed, but he is taking it all in stride.
I am so proud of him. :)
I am so proud of him. :)
Thursday, June 12, 2008
Update
Ricky is still doing great in every way. He is thriving in school and looking forward to a fun summer. He will be going to summer school for one month, bipolar camp for 3 days in August, and we have two family vacations coming up as well. Ricky hasn’t grown taller in a long time, so he is being seen regularly by an endocrinologist. His lungs are doing great and his bipolar disorder is stable.
Andrew and Misty are also doing well. Misty will be 2 this summer. Andrew is in gifted programs at school and is doing great. I am working still only part time for the city library, though I am now also an eBay power seller. This has been a fun adventure for me! I am also almost done with online medical transcription training.
Our big news is that Ricky’s stepdad, Dave, will be laid off in August due to budget cuts. He is currently job searching nationwide, and we are unsure of where we will end up. We are nervous but hopeful! (He is a pediatric nurse manager; so if anyone has any job leads we’d appreciate that too.)
Andrew and Misty are also doing well. Misty will be 2 this summer. Andrew is in gifted programs at school and is doing great. I am working still only part time for the city library, though I am now also an eBay power seller. This has been a fun adventure for me! I am also almost done with online medical transcription training.
Our big news is that Ricky’s stepdad, Dave, will be laid off in August due to budget cuts. He is currently job searching nationwide, and we are unsure of where we will end up. We are nervous but hopeful! (He is a pediatric nurse manager; so if anyone has any job leads we’d appreciate that too.)
Thursday, May 15, 2008
Misty and Ricky
I know I haven't posted in a while, so I wanted to drop this picture from this week on here and just say that Ricky is doing great. He's thriving in middle school, and even started attending PE classes last week (and is doing great!).
We are so proud of Ricky and the progress he has made in managing his bipolar disorder. He's an amazing kid!
Also, you can now get to this blog by going here: http://blog.cfboy.com and visit Ricky's page (which I'll admit needs to be updated) at http://www.cfboy.com.
Thanks for dropping by!
We are so proud of Ricky and the progress he has made in managing his bipolar disorder. He's an amazing kid!
Also, you can now get to this blog by going here: http://blog.cfboy.com and visit Ricky's page (which I'll admit needs to be updated) at http://www.cfboy.com.
Thanks for dropping by!
Friday, March 14, 2008
hospital update
Just wanted to let everyone know that Ricky came home from the hospital, after 14 days, on March 2, as expected. He has been doing great since he came home on March 2, and on Thursday March 6 he did have his Medi-Port put in. It all went well, and the only delay/problem was waiting for the okay to go home (it was outpatient surgery). The incision sites are healing nicely.
He’s back at his new school and doing very well! As always, we appreciate the mail, and the get well cards while he was in were great!
Thanks to everyone for your support and good wishes.
He’s back at his new school and doing very well! As always, we appreciate the mail, and the get well cards while he was in were great!
Thanks to everyone for your support and good wishes.
Wednesday, March 12, 2008
that's my boy!
I took this at the playground yesterday, in the waning daylight. His hair was staticky from the slide, he was happy to be out for a walk (he asks me every day if we can go for a walk) and it was a purely happy moment.
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