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. :)
Showing posts with label social skills. Show all posts
Showing posts with label social skills. Show all posts
Wednesday, April 13, 2011
Sunday, March 8, 2009
various Ricky updates
I've had some behavioral issues with Ricky at home and at school, but believe it or not, as opposed to two years ago, I am pretty sure that this is a teenage thing. It worries me to think about what is to come when you combine the teenage thing with the bipolar thing.
Both of the boys had spring pictures taken this week. I had them both dress up and they both had haircuts.
This past week I spent a lot of time dealing with insurance issues surrounding three of Ricky's psych meds. The situation was that Blue Cross only allows one of each of these three pills per day. And he actually takes 5, 6, and 2.5 of them respectively. So they needed a prior authorization form from his psychiatrist. This was sent in on Tuesday and they claimed they hadn't gotten it yet. So I got the doctor's office to fax it again. I'm sure they got it the first time, but whatever. Stupid heads. :(
They finally authorized him to get 90 of two of them and 60 of another temporarily (not enough for a month, but a good start) and I picked those up on Friday night. SO aggravating. Since when are insurance companies allowed to say how much medication a person should be able to take!?!?
Next weekend, the boys and I are going to Mother-Son Weekend at YMCA Camp Campbell while Misty is with Dave. I managed to get $175 underwritten by the Y due to our financial need, and my mom paid the other $75. That reminds me that I need to take a better look at their packing list and figure out what we need to buy and take! :) The cabin has electricity and there are accommodations for Ricky's medical needs and equipment, so it should be great!
Ricky starts in spring VIP soccer on the 22nd. He has done the fall version three times but never spring. He really wanted to do it, so I signed him up. :) It's from 1:30 to 3:30 every Sunday for a while.
Ricky is also in social skills group again. This time around there are kids closer to his age and it will hopefully go better as opposed to last time, when they were all a bit older and intimidated him.
Today's ENT appointment has been rescheduled for March 16. I hope we can get some answers about the dizziness. He had another bad spell last week and has minor ones on a daily basis.
And here is our biggest news this week! As you might recall (actually I'm trying to remember how much I said about it at the time), in November, the kids, my mom and I were treated to a trip to San Francisco to do a patient testimonial for Genentech's fabulous drug Pulmozyme.
This week, Genentech's annual report came out and Ricky's the featured patient for Pulmozyme. You can see his page here.
This is Ricky's second time being featured on the Pulmozyme website.
Both of the boys had spring pictures taken this week. I had them both dress up and they both had haircuts.
This past week I spent a lot of time dealing with insurance issues surrounding three of Ricky's psych meds. The situation was that Blue Cross only allows one of each of these three pills per day. And he actually takes 5, 6, and 2.5 of them respectively. So they needed a prior authorization form from his psychiatrist. This was sent in on Tuesday and they claimed they hadn't gotten it yet. So I got the doctor's office to fax it again. I'm sure they got it the first time, but whatever. Stupid heads. :(
They finally authorized him to get 90 of two of them and 60 of another temporarily (not enough for a month, but a good start) and I picked those up on Friday night. SO aggravating. Since when are insurance companies allowed to say how much medication a person should be able to take!?!?
Next weekend, the boys and I are going to Mother-Son Weekend at YMCA Camp Campbell while Misty is with Dave. I managed to get $175 underwritten by the Y due to our financial need, and my mom paid the other $75. That reminds me that I need to take a better look at their packing list and figure out what we need to buy and take! :) The cabin has electricity and there are accommodations for Ricky's medical needs and equipment, so it should be great!
Ricky starts in spring VIP soccer on the 22nd. He has done the fall version three times but never spring. He really wanted to do it, so I signed him up. :) It's from 1:30 to 3:30 every Sunday for a while.
Ricky is also in social skills group again. This time around there are kids closer to his age and it will hopefully go better as opposed to last time, when they were all a bit older and intimidated him.
Today's ENT appointment has been rescheduled for March 16. I hope we can get some answers about the dizziness. He had another bad spell last week and has minor ones on a daily basis.
And here is our biggest news this week! As you might recall (actually I'm trying to remember how much I said about it at the time), in November, the kids, my mom and I were treated to a trip to San Francisco to do a patient testimonial for Genentech's fabulous drug Pulmozyme.
This week, Genentech's annual report came out and Ricky's the featured patient for Pulmozyme. You can see his page here.
This is Ricky's second time being featured on the Pulmozyme website.
Sunday, September 28, 2008
Ricky today...
Today I got to sleep in a little bit, because Misty is with her daddy for the weekend. When I got up, Ricky was sitting on the couch watching TV, doing this gaspy, yawny thing he does when he's not getting enough air. I asked him how he was feeling and he said that his chest was tight. Yep, time for his breathing treatment. So far that seems to have helped, but even just this little bit of trouble this morning has reminded me that things will never be easy, and that this disease SUCKS.
For now he is fine. And we just go day by day and take things as they come. I hate that life is uncertain, but I have come to realize that I need to give my kids the best life I can, and the most enriching experiences I can find, because we never know how much time we have left. Does that sound morbid?
The picture with this entry is of Ricky (in yellow) playing with some littler kids at the beach last night. We went to a geocaching event with a bonfire and s'mores. Ricky and Andrew both love playing in the sand. Ricky had some issues with the other kids... He has some social skills problems and they ended up becoming a big issue yesterday. I told him, though, that even though I was upset with his behavior, I will always love him just the way he is. He's my boy.
For now he is fine. And we just go day by day and take things as they come. I hate that life is uncertain, but I have come to realize that I need to give my kids the best life I can, and the most enriching experiences I can find, because we never know how much time we have left. Does that sound morbid?
The picture with this entry is of Ricky (in yellow) playing with some littler kids at the beach last night. We went to a geocaching event with a bonfire and s'mores. Ricky and Andrew both love playing in the sand. Ricky had some issues with the other kids... He has some social skills problems and they ended up becoming a big issue yesterday. I told him, though, that even though I was upset with his behavior, I will always love him just the way he is. He's my boy.
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