Ricky went to school today! I told him that he should have them call me if he wasn't doing well, but he stuck it out the whole day and did just fine. He did not go to PE... That would have been too much for him I think.
When he got home he was flushed and happy and had had a good day. Go Ricky! I have questioned him a few times throughout the afternoon and evening as to how he is doing and he is cautiously optimistic. He doesn't seem to think he is much better, but he appears to me to have more energy and to be breathing more easily, even though he has been having some truly frightening coughing fits.
So... Better. Yay.
I forgot to mention that the boys' Medi-Cal cards came yesterday. Hooray! Perfect timing. So Ricky is all set for his follow-up appointment next week. I applied for California Children's Services today and because he has no-share-of-cost Medi-Cal, he should be approved for that. It would be nice if we'd hear about the SSI soon as well.
Also, I have more news about an exciting thing we get to do this month or next, but that will have to wait for when I am not falling asleep at the desk.
I'm exhausted as Misty only allowed me 4 hours of sleep last night (ugh) and I was a zombie at work this morning, so I am off to bed now! Goodnight and thank you all for visiting and keeping Ricky in your thoughts.
Thursday, October 2, 2008
Wednesday, October 1, 2008
Ricky today
I thought Ricky might be well enough to go to school today, but I should have known better... When I have been on Prednisone it has taken 2-3 days for me to start feeling a little better.
He got up before me this morning. He even had breakfast. :) But he said his chest was tight and there was mucus in his throat that kept coming up (ew, I know) and he had not gotten dressed yet. I made the executive decision, after a discussion with Ricky, to keep him home. So I called out sick to work and stayed home with him.
Ricky stayed comfortable on the couch and I got some stuff done around the house. I kept Misty home. While she napped, Ricky and I had some bonding time. :)
I spoke with Ricky's teacher and she was saddened to hear that he was sick. Today he missed picture retakes (the ones he had taken a month ago were pretty awful because he had a sinus infection at the time and was miserable) and also missed turning in his magazine fundraiser stuff. Luckily all of the orders he got (15 of them at last count!) were online, so that shouldn't matter.
I also spoke with his mental health professionals today. I canceled the meeting we are supposed to have at the house on Friday just because things are so uncertain AND I may end up working that day to make up for missing at least three days of work this week.
In the afternoon, Ricky had individual therapy followed by group therapy. Apparently he was fairly regressive in individual therapy, rather like a 2 year old according to the therapist. This may have been a product of his not feeling well or the Prednisone affecting his mood. However, he did fine in group therapy. He is the youngest and paradoxically most focused person in his group.
We'll see how things are tomorrow. I hope he starts to get better. I observed him working pretty hard to breathe a few times today, but I know that the Prednisone can help the tightness and maybe help with the breathing difficulty. A while ago, in his sleep, he had a pretty bad coughing fit.
I really hate this disease. I just hope we see some improvement soon. This is four exacerbations in a year; his disease has definitely progressed. Before he went in a year ago, he had been out of the hospital for a year and a half.
That's it for now.
He got up before me this morning. He even had breakfast. :) But he said his chest was tight and there was mucus in his throat that kept coming up (ew, I know) and he had not gotten dressed yet. I made the executive decision, after a discussion with Ricky, to keep him home. So I called out sick to work and stayed home with him.
Ricky stayed comfortable on the couch and I got some stuff done around the house. I kept Misty home. While she napped, Ricky and I had some bonding time. :)
I spoke with Ricky's teacher and she was saddened to hear that he was sick. Today he missed picture retakes (the ones he had taken a month ago were pretty awful because he had a sinus infection at the time and was miserable) and also missed turning in his magazine fundraiser stuff. Luckily all of the orders he got (15 of them at last count!) were online, so that shouldn't matter.
I also spoke with his mental health professionals today. I canceled the meeting we are supposed to have at the house on Friday just because things are so uncertain AND I may end up working that day to make up for missing at least three days of work this week.
In the afternoon, Ricky had individual therapy followed by group therapy. Apparently he was fairly regressive in individual therapy, rather like a 2 year old according to the therapist. This may have been a product of his not feeling well or the Prednisone affecting his mood. However, he did fine in group therapy. He is the youngest and paradoxically most focused person in his group.
We'll see how things are tomorrow. I hope he starts to get better. I observed him working pretty hard to breathe a few times today, but I know that the Prednisone can help the tightness and maybe help with the breathing difficulty. A while ago, in his sleep, he had a pretty bad coughing fit.
I really hate this disease. I just hope we see some improvement soon. This is four exacerbations in a year; his disease has definitely progressed. Before he went in a year ago, he had been out of the hospital for a year and a half.
That's it for now.
Tuesday, September 30, 2008
Ricky update
Ricky's appointment was at 1. Dropped Misty off at day care and then headed up there. Got there a little early so he could do a chest x-ray. Because Misty wasn't with us, I was able to go in for the chest x-ray and see it when it popped up on the computer. Even I could see the infiltrates in that lower left lobe. :(
Once in clinic, he was measured and weighed... He gained 1.5 kilos and is now officially 5 feet tall! (How's that for mixing metric and English systems?) Yay! That's after 3 years of hardly growing at all.
His oxygen sats were down to 94... Not too bad, but bad for him. He did spirometry and his lung function was down from the 80s into the 70s. He did manage to hork up some sputum during the spirometry, which will be good to test and see what he's growing. Oh, and the labs from yesterday were all okay, though the hemoglobin A1C and a few others haven't come back yet.
His doc was not in today, so the doc we did see, with whom we are familiar, confirmed that he again has lower left lobe pneumonia. She decided to go with oral Rifampin, which Ricky had in July, and Prednisone for the inflammation. We are increasing his treatments too. We go back next Thursday, and if he's not better, he's going to be admitted.
I'm glad he's not being admitted (yet) but I'm also apprehensive. I hope he gets better. But Prednisone is really scary. When I am on it for asthma, it makes ME bitchy and cranky and gain weight and have bizarre dreams. Ricky hasn't been on it in a few years but the last time he was, he had behavioral isses. And he's bipolar! Gotta keep my fingers crossed and hope for the best!
He's back to school tomorrow as long as he's doing better. Tomorrow are picture retakes too. I also told him I'm going to have the teacher keep him out of PE.
Ricky went to bed tonight complaining of still having a tight chest, even though he had just done all of his treatments. I really, really hope these meds work.
Went and picked up the last of the meds I got refilled for all of us. I refilled everything possible at the end of the month. One, a psych med, was STILL not approved by the doctor, so I had to call up and get the on-call psychiatrist to approve it.
We'll see what tomorrow brings! (Hopefully a Medi-Cal card in the mail... That would give me a sigh of relief, that's for sure.)
Once in clinic, he was measured and weighed... He gained 1.5 kilos and is now officially 5 feet tall! (How's that for mixing metric and English systems?) Yay! That's after 3 years of hardly growing at all.
His oxygen sats were down to 94... Not too bad, but bad for him. He did spirometry and his lung function was down from the 80s into the 70s. He did manage to hork up some sputum during the spirometry, which will be good to test and see what he's growing. Oh, and the labs from yesterday were all okay, though the hemoglobin A1C and a few others haven't come back yet.
His doc was not in today, so the doc we did see, with whom we are familiar, confirmed that he again has lower left lobe pneumonia. She decided to go with oral Rifampin, which Ricky had in July, and Prednisone for the inflammation. We are increasing his treatments too. We go back next Thursday, and if he's not better, he's going to be admitted.
I'm glad he's not being admitted (yet) but I'm also apprehensive. I hope he gets better. But Prednisone is really scary. When I am on it for asthma, it makes ME bitchy and cranky and gain weight and have bizarre dreams. Ricky hasn't been on it in a few years but the last time he was, he had behavioral isses. And he's bipolar! Gotta keep my fingers crossed and hope for the best!
He's back to school tomorrow as long as he's doing better. Tomorrow are picture retakes too. I also told him I'm going to have the teacher keep him out of PE.
Ricky went to bed tonight complaining of still having a tight chest, even though he had just done all of his treatments. I really, really hope these meds work.
Went and picked up the last of the meds I got refilled for all of us. I refilled everything possible at the end of the month. One, a psych med, was STILL not approved by the doctor, so I had to call up and get the on-call psychiatrist to approve it.
We'll see what tomorrow brings! (Hopefully a Medi-Cal card in the mail... That would give me a sigh of relief, that's for sure.)
Monday, September 29, 2008
Ricky update
This morning I got up at 6:30 and Ricky was still asleep. It was all I could do to roust him from bed by 7. This is the boy who usually wakes up at 5:30! I made the decision to keep him home, as he was clearly sick, and was telling me that his chest was tight and everything. :( Meanwhile Andrew took his sweet time getting up, so I canceled both of their buses and showered while Ricky did his breathing treatment. Then we took Andrew to school.
After that, smart thinking mom (thank you very much) took Ricky and myself to get our blood drawn. We both had fasting labs that needed to be done, and neither of us had eaten. We are in different medical groups so we had to go to different labs, but they are in the same medical building so it didn't take too long. Misty was very concerned about us getting poked!
The pediatrician's office is also in that medical complex, so we stopped by there when we finished the labs, at about 9. Oddly, they were not open. I decided to go ahead and take Misty to day care because I figured we'd be doing Ricky's medical stuff most of the day. So as I drove her to day care, I tried calling the pediatrician's office. All morning their recording was still on the weekend recording, which gave the name and number of the doctor who was covering for them on the weekend. Finally in desperation I called the covering doctor. His staff happened to know which doctor was covering for our pediatrician today, and gave me the number.
So after we dropped Misty off, I got ahold of the real covering doctor's office. They were surprised to hear that they were covering! Argh! Anyway, they agreed to see Ricky at 10 and we headed over.
The doctor was nice... An Indian lady. All of the patients coming and going were also Indian (as in from India) and I started to fear that the doctor would not know what to do with a little white boy with cystic fibrosis (which is almost never seen in non-Caucasian people). My fears were allayed when she asked all of the right questions, like about what kind of bacteria he cultures and what we do for treatments and chest percussion and what antibiotics are usually prescribed for him. Clearly she'd had training in a hospital or clinic with CF patients -- I should have known better than to worry!
Anyway, the doctor wasn't sure what to do. She said she'd call Ricky's pediatrician and the pulmonologist to find out what to do, and that someone would call us.
Ricky and I went home. He played DS for about twenty minutes and then the next time I looked over at the couch, he was out cold. He ended up sleeping for over two hours -- very unusual for him. He was clearly feeling crummy. :(
So while Ricky slept I called the CF clinic again. I had tried calling the pediatric CF nurse in the morning and found that she was out until 1:00. Argh. Her message said to have the pediatric pulmonologist on call paged. So at this point I did that, but the operator declined to page the doctor since it was business hours. Argh! Eventually I was transferred to the adult CF coordinator, since at least she was in the office, but she didn't answer and I left a message.
Eventually, thank goodness, the pediatric CF coordinator called me back, having gotten back from her morning meeting. As it happened, Ricky's pulmonologist was the one on call and Mary the nurse paged her. Dr. C said for Ricky to come in tomorrow at 1 for an x-ray and spirometry. Tomorrow! I was kinda frustrated... I mean I had been trying to get help for him all day! But... At least he is going to be seen.
(At some point, our actual pediatrician's office called back finally -- I had left them a message in the morning when no one was answering -- and I kinda grouched at them over them not answering the phone. They said they'd try to get ahold of the pulmonologist too but it ended up not to matter.)
By then it was 1:45 p.m. I woke Ricky up with difficulty. He was very hot and sweaty and groggy and was complaining about his chest being tight again. I took his temperature and he did not have a fever. We got in the car and went to get Misty and Andrew.
We got Misty from day care and Andrew from school and went up to Stanford for Ricky's previously scheduled psychiatry appointment. That went well... Since he has been so stable! I also found out that that clinic takes Medi-Cal, which greatly reassured me. We go back the first week of November.
We got fast food on the way home and then got Ricky going on his treatment. He was slow-moving all evening and at bedtime he was complaining about his chest being tight again -- even after having had all of his breathing treatments.
I'm afraid he'll end up being inpatient after we go in tomorrow. But we'll just have to wait and see. My poor guy!
After that, smart thinking mom (thank you very much) took Ricky and myself to get our blood drawn. We both had fasting labs that needed to be done, and neither of us had eaten. We are in different medical groups so we had to go to different labs, but they are in the same medical building so it didn't take too long. Misty was very concerned about us getting poked!
The pediatrician's office is also in that medical complex, so we stopped by there when we finished the labs, at about 9. Oddly, they were not open. I decided to go ahead and take Misty to day care because I figured we'd be doing Ricky's medical stuff most of the day. So as I drove her to day care, I tried calling the pediatrician's office. All morning their recording was still on the weekend recording, which gave the name and number of the doctor who was covering for them on the weekend. Finally in desperation I called the covering doctor. His staff happened to know which doctor was covering for our pediatrician today, and gave me the number.
So after we dropped Misty off, I got ahold of the real covering doctor's office. They were surprised to hear that they were covering! Argh! Anyway, they agreed to see Ricky at 10 and we headed over.
The doctor was nice... An Indian lady. All of the patients coming and going were also Indian (as in from India) and I started to fear that the doctor would not know what to do with a little white boy with cystic fibrosis (which is almost never seen in non-Caucasian people). My fears were allayed when she asked all of the right questions, like about what kind of bacteria he cultures and what we do for treatments and chest percussion and what antibiotics are usually prescribed for him. Clearly she'd had training in a hospital or clinic with CF patients -- I should have known better than to worry!
Anyway, the doctor wasn't sure what to do. She said she'd call Ricky's pediatrician and the pulmonologist to find out what to do, and that someone would call us.
Ricky and I went home. He played DS for about twenty minutes and then the next time I looked over at the couch, he was out cold. He ended up sleeping for over two hours -- very unusual for him. He was clearly feeling crummy. :(
So while Ricky slept I called the CF clinic again. I had tried calling the pediatric CF nurse in the morning and found that she was out until 1:00. Argh. Her message said to have the pediatric pulmonologist on call paged. So at this point I did that, but the operator declined to page the doctor since it was business hours. Argh! Eventually I was transferred to the adult CF coordinator, since at least she was in the office, but she didn't answer and I left a message.
Eventually, thank goodness, the pediatric CF coordinator called me back, having gotten back from her morning meeting. As it happened, Ricky's pulmonologist was the one on call and Mary the nurse paged her. Dr. C said for Ricky to come in tomorrow at 1 for an x-ray and spirometry. Tomorrow! I was kinda frustrated... I mean I had been trying to get help for him all day! But... At least he is going to be seen.
(At some point, our actual pediatrician's office called back finally -- I had left them a message in the morning when no one was answering -- and I kinda grouched at them over them not answering the phone. They said they'd try to get ahold of the pulmonologist too but it ended up not to matter.)
By then it was 1:45 p.m. I woke Ricky up with difficulty. He was very hot and sweaty and groggy and was complaining about his chest being tight again. I took his temperature and he did not have a fever. We got in the car and went to get Misty and Andrew.
We got Misty from day care and Andrew from school and went up to Stanford for Ricky's previously scheduled psychiatry appointment. That went well... Since he has been so stable! I also found out that that clinic takes Medi-Cal, which greatly reassured me. We go back the first week of November.
We got fast food on the way home and then got Ricky going on his treatment. He was slow-moving all evening and at bedtime he was complaining about his chest being tight again -- even after having had all of his breathing treatments.
I'm afraid he'll end up being inpatient after we go in tomorrow. But we'll just have to wait and see. My poor guy!
Sunday, September 28, 2008
evening update...
As we got to my mom's house this afternoon (I was dropping the boys off so I could go to work), Ricky said he felt dizzy and had a headache... The same thing that has been happening a lot lately. When we got inside I checked his blood sugar and found it to be only 72! My mom immediately gave him some Life Savers at my request. It is strange with this dizziness thing... Sometimes it is related to the blood sugar and sometimes not.
When I came later to pick the boys up, Ricky said he had still had a headache during the day, along with the chest tightness that he had this morning. I sure hope he is not getting sick. Especially since our insurance from Dave (the boys' stepdad and Misty's dad) ends on Tuesday. The boys are supposed to have Medi-Cal (state insurance) after that but who knows when it will be processed? I applied 9 days ago and so far not a word. I was assured "well it will be retroactive", which helps for hospitalizations but doesn't really help much for prescriptions, etc. The idea of being without insurance, ESPECIALLY with Ricky, scares me to death.
I guess I just have to trust that things will be okay.
When I came later to pick the boys up, Ricky said he had still had a headache during the day, along with the chest tightness that he had this morning. I sure hope he is not getting sick. Especially since our insurance from Dave (the boys' stepdad and Misty's dad) ends on Tuesday. The boys are supposed to have Medi-Cal (state insurance) after that but who knows when it will be processed? I applied 9 days ago and so far not a word. I was assured "well it will be retroactive", which helps for hospitalizations but doesn't really help much for prescriptions, etc. The idea of being without insurance, ESPECIALLY with Ricky, scares me to death.
I guess I just have to trust that things will be okay.
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.
Wednesday, September 24, 2008
eye doctor appointment
Today Misty and I got Ricky from school and took him to his ophthamology appointment up at Stanford. I called the transportation department at least an hour before school was going to get out and canceled Ricky's bus. I also called and talked to the classroom aide and told him that I was picking Ricky up. Nonetheless, I got there and the classroom was deserted and Ricky was on the bus! It's a good thing his driver saw me and didn't leave, or I would have missed him! Apparently the dispatcher and the teacher had not passed on the message to anyone. Grr.
Anyway, we headed up to the eye appointment. We got there a little before the appointment, which was scheduled for 3:45. They warned me that she was running about 15 minutes behind, and we did get called in at 4. The technician did some preliminary examination and testing and administered the dilation drops (ick) and said we should sit in the waiting room for 20 min.
20 minutes turned into half an hour... And then an hour! We finally went back again after 5! The doctor then didn't even come into the exam room til after 5:30, apologizing profusely. It's a good thing that she's a great doctor, or I would have been more annoyed. She examined him and determined that his prescription will be staying the same... I think it has been the same for 2 years now, but I may have lost track.
I mentioned the dizziness but she didn't think there was a connection. She thinks we need to pursue neuro and endocrine, which I had a feeling about anyway. She wrote him a note to excuse him from today's homework, because his eyes were dilated. Lucky kid. :) We go back in a year.
While we'd been waiting I'd visited the lab, right across the waiting room, to see if they could go ahead and do the labs that the gastroenterologist ordered, but it turns out that our medical group uses a different lab, so we'll have to go a different day. It's just as well, since for accurate results he really needs to be fasting (which with him is always SO much fun). They also can't draw it out of the port (not certified) so there's no point. I THINK that the lab down here will give me the vials and let me draw him from the port myself. So either I'll do that (because I can get the vials in advance and draw him first thing some morning so he doesn't have to wait around in their waiting room to be drawn, starving to DEATH -- he is so dramatic) or just let them draw from a vein sometime. He's just getting harder and harder to draw peripherally.
By the way, the picture you see with this post is a scan of a scrapbook page from the day that Ricky got his first glasses. He was all of 4.5 years old! You might be able to see he's a little cross-eyed... He had a lazy left eye, and that's still his weaker eye.
Anyway, we headed up to the eye appointment. We got there a little before the appointment, which was scheduled for 3:45. They warned me that she was running about 15 minutes behind, and we did get called in at 4. The technician did some preliminary examination and testing and administered the dilation drops (ick) and said we should sit in the waiting room for 20 min.
20 minutes turned into half an hour... And then an hour! We finally went back again after 5! The doctor then didn't even come into the exam room til after 5:30, apologizing profusely. It's a good thing that she's a great doctor, or I would have been more annoyed. She examined him and determined that his prescription will be staying the same... I think it has been the same for 2 years now, but I may have lost track.
I mentioned the dizziness but she didn't think there was a connection. She thinks we need to pursue neuro and endocrine, which I had a feeling about anyway. She wrote him a note to excuse him from today's homework, because his eyes were dilated. Lucky kid. :) We go back in a year.
While we'd been waiting I'd visited the lab, right across the waiting room, to see if they could go ahead and do the labs that the gastroenterologist ordered, but it turns out that our medical group uses a different lab, so we'll have to go a different day. It's just as well, since for accurate results he really needs to be fasting (which with him is always SO much fun). They also can't draw it out of the port (not certified) so there's no point. I THINK that the lab down here will give me the vials and let me draw him from the port myself. So either I'll do that (because I can get the vials in advance and draw him first thing some morning so he doesn't have to wait around in their waiting room to be drawn, starving to DEATH -- he is so dramatic) or just let them draw from a vein sometime. He's just getting harder and harder to draw peripherally.
By the way, the picture you see with this post is a scan of a scrapbook page from the day that Ricky got his first glasses. He was all of 4.5 years old! You might be able to see he's a little cross-eyed... He had a lazy left eye, and that's still his weaker eye.
Monday, September 22, 2008
Ricky & soccer
Yesterday was Ricky's second soccer day this season. He actually missed the first day, two weeks ago, because I was working.
Ricky plays in VIP soccer, which, according to the AYSO website, "...provides a quality soccer experience for children and adults whose physical or mental disabilities make it difficult to successfully participate on mainstream teams."
Many of the kids on Ricky's teams have been on the autism spectrum. He has also played with kids with spina bifida (with their walkers!), Down Syndrome, severe ADHD, and mild to moderate retardation, as well as a visually impaired child.
The teams are co-ed but grouped by age and ability. Ricky's abilities are very good as far as the scoccer part goes, but he does have some frustrations with some of the rules, etc. His main impairment which would not make him suitable for a regular team is his energy level. When the kids run around the field to warm up, for example, he cannot keep up and ends up walking, due to his lung capacity. He is also a little awkward, which would probably be a problem in regular soccer.
So, every Sunday at 1:30 we go to the field and Ricky practices with his team. Each player has a "buddy" who assist the player with playing and getting involved in the game. The buddies are pre-teens, teens, and adults who volunteer their time. They and the volunteer coach ensure that each child has the opportunity to score in the game and to play various positions. Ricky prefers goalie, possibly because he doesn't have to run around as much. He takes pride in his position as goalie and takes it very seriously!
The first season, Ricky was at first on a team with some profoundly disabled kids. They moved him to a different team with higher-abled kids. Last year, he was on an appropriate team. This time around, I think he's on the wrong team again... The kids on his team have pretty serious autism and other disabilities, and in the next field over there is a team that I think would be more appropriate. If his coach doesn't decide to change him over, I might say something soon and get him changed over myself. I think he gets frustrated with the amount of help needed by the kids he's currently playing with. We'll see what happens. :)
Ricky plays in VIP soccer, which, according to the AYSO website, "...provides a quality soccer experience for children and adults whose physical or mental disabilities make it difficult to successfully participate on mainstream teams."
Many of the kids on Ricky's teams have been on the autism spectrum. He has also played with kids with spina bifida (with their walkers!), Down Syndrome, severe ADHD, and mild to moderate retardation, as well as a visually impaired child.
The teams are co-ed but grouped by age and ability. Ricky's abilities are very good as far as the scoccer part goes, but he does have some frustrations with some of the rules, etc. His main impairment which would not make him suitable for a regular team is his energy level. When the kids run around the field to warm up, for example, he cannot keep up and ends up walking, due to his lung capacity. He is also a little awkward, which would probably be a problem in regular soccer.
So, every Sunday at 1:30 we go to the field and Ricky practices with his team. Each player has a "buddy" who assist the player with playing and getting involved in the game. The buddies are pre-teens, teens, and adults who volunteer their time. They and the volunteer coach ensure that each child has the opportunity to score in the game and to play various positions. Ricky prefers goalie, possibly because he doesn't have to run around as much. He takes pride in his position as goalie and takes it very seriously!
The first season, Ricky was at first on a team with some profoundly disabled kids. They moved him to a different team with higher-abled kids. Last year, he was on an appropriate team. This time around, I think he's on the wrong team again... The kids on his team have pretty serious autism and other disabilities, and in the next field over there is a team that I think would be more appropriate. If his coach doesn't decide to change him over, I might say something soon and get him changed over myself. I think he gets frustrated with the amount of help needed by the kids he's currently playing with. We'll see what happens. :)
Sunday, September 21, 2008
worried about Ricky...
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.
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.
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.
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