The doctor FINALLY called, apologizing for his terrible phone system. He raised her Prednisone to 40 mg., which is the highest dose she's been on since her Sjogren's diagnosis a year ago. He said that there was a dramatic difference in the body's response when you go from 30 to 40 and thought she should see some improvement in a couple of days. Why then, did he not try this dosage a long time ago? He has admitted that because she is dealing with issues that he doesn't regularly treat that he may not be as aggressive as a rheumatologist that sees adults would be. She'll be seventeen in less than a year and that's the magic number when an adult rheumatologist will see her. Other than his phone system, I have no complaints about her doctor. Pediatric Rheumatologists are in very short supply (would you believe there are 10 states WITHOUT one) so I understand why it's hard to get in touch with him sometimes. Most likely, I'll be scheduling her to see another doctor the day after her seventeenth birthday. We need aggressive.
I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.
Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.
Friday, October 30, 2009
Tuesday, October 27, 2009
Camp Boggy Creek
Haley's rheumatologist handed us an application for us to go to a family weekend at Camp Boggy Creek on her last appointment. I filled it out not knowing just what to expect. When she was accepted to go for the weekend, I was excited but a little apprehensive as well. Camp Boggy Creek provides fun time away for kids/families dealing with some type of chronic illness. It's funded by Paul Newman Charities and other private donors. The weekend we were there for was the Juvenile Rheumatoid Arthritis and other rheumatoid conditions weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
Wednesday, October 14, 2009
Learning
The last month or so has been a huge struggle. There are no words that can explain what it's like watching your child suffer in pain. You do not get used to it and it doesn't get any easier, that's for sure. The fact of the matter would be that it gets HARDER every day that she is in pain. I wish it was me that was dealing with all this, but God doesn't play "Let's make a deal". He won't let us trade places, even though my sweet girl said that I wouldn't want to even if I could.
Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.
Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.
Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.
Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.
Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.
Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.
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