Thursday, March 28, 2013
Thursday, March 28, 2013
I got a call Tuesday afternoon that Collins glasses were ready, so we went and picked them up. He was excited to get them, and said, "Now I look like you and Daddy and Neya!" A little later however, he was crying, "I don't want to wear them! I don't like them!" He's slowly getting used to them. I think he looks extremely adorable in them!
Friday, March 22, 2013
Friday, March 22, 2013
Collin and I flew down to Houston Monday for the follow-up appointment with Dr. Edmond Tuesday afternoon. As usual, Collin was a great traveler, and the trip went smoothly. The appointment Tuesday was a bit long once you factor in time spent waiting, but overall it went very well.
Dr. Edmond said the condition of the surface of Collin's right eye has improved about 90% with the frequency of the lubricating drops, but she feels it is still a bit dry which is why he holds it closed with his finger so much. At first she didn't feel the patching was helping, but she had been thinking we had been doing it for a longer time. When I reminded her that we had only been patching since January (after Collin's eyes had healed following the surgery in December), and told her that I've noticed a difference in how he sees out of the right eye when the left eye is patched now versus when we first started in January, she said to continue patching for two hours a day. Collin is very near sighted in his right eye, so she gave us a prescription for glasses, which will help with a few things. First, glasses will help protect his good eye, which will be reassuring once he is in school. Second, the right lense will help a bit with the near sightedness in the right eye, which will help him see even better when the left eye is patched. Third, we can use an eye patch that will fit over the eyeglass frames instead of the patches that stick to Collin's face; when he's on the Accutane and his skin is very dry, the patch either pulls off skin, or doesn't stick if there is moisturizer on his face. And fourth, since Collin's eyes are very sensitive to sunlight and he wears sunglasses outside, she said we might be able to find glasses that come with clip on sunglasses. So the plan is to get Collin his glasses, and keep using the lubricating drops and eye patch for the next few months. When we are back in Houston over the summer for his one-year post-radiation follow-up appointments with MD Anderson, Dr. Edmond will check his vision again. Then while we're there, she wants Collin to have the surgery to put the small gold weight in his right eyelid to help that eye close a bit more so Collin might be more comfortable.
After the appointment, we stopped in to visit our friend Hannah, who we met last summer at MD Anderson Proton Center. She is also fighting medulloblastoma, and has been getting her chemo at MD Anderson Cancer Center. It was really nice to see her and her parents, even if it was a quick visit!
Wednesday we had a relaxing day with my parents, and bright and early Thursday morning, Collin and I flew home. Our flight left at 7:30 am, so we were up by 3:30-4:00 am (central time). I chose that flight because it got us back to BWI early enough that Bill had time to pick us up and get us back home before it was time to pick Neya up from school, but it turned out to be too early for Collin. He started crying about ten minutes before we boarded the plane. Once we were on the plane, he went to sleep for a little while, but when he woke up, he was very unhappy. He dozed once or twice more, but when he wasn't dozing, he was whining or crying or throwing a tantrum. Needless to say, it made for a stressful flight. It was pretty out of character for him, so I think he was tired and had just had enough. When we finally got home, he was happier, and when he saw Neya after she got home, he was VERY happy!
Today Collin and I went and picked out his glasses. He looks very cute in the frames we chose, and we were able to get clip-on sunglasses that fit the frames perfectly. Collin was excited to pick out the frames; he said "Now I wear glasses like mommy, and daddy, and Neya!" I hope he still feels excited when they're ready to be picked up in about a week and he realizes he has to wear them all the time!
Dr. Edmond said the condition of the surface of Collin's right eye has improved about 90% with the frequency of the lubricating drops, but she feels it is still a bit dry which is why he holds it closed with his finger so much. At first she didn't feel the patching was helping, but she had been thinking we had been doing it for a longer time. When I reminded her that we had only been patching since January (after Collin's eyes had healed following the surgery in December), and told her that I've noticed a difference in how he sees out of the right eye when the left eye is patched now versus when we first started in January, she said to continue patching for two hours a day. Collin is very near sighted in his right eye, so she gave us a prescription for glasses, which will help with a few things. First, glasses will help protect his good eye, which will be reassuring once he is in school. Second, the right lense will help a bit with the near sightedness in the right eye, which will help him see even better when the left eye is patched. Third, we can use an eye patch that will fit over the eyeglass frames instead of the patches that stick to Collin's face; when he's on the Accutane and his skin is very dry, the patch either pulls off skin, or doesn't stick if there is moisturizer on his face. And fourth, since Collin's eyes are very sensitive to sunlight and he wears sunglasses outside, she said we might be able to find glasses that come with clip on sunglasses. So the plan is to get Collin his glasses, and keep using the lubricating drops and eye patch for the next few months. When we are back in Houston over the summer for his one-year post-radiation follow-up appointments with MD Anderson, Dr. Edmond will check his vision again. Then while we're there, she wants Collin to have the surgery to put the small gold weight in his right eyelid to help that eye close a bit more so Collin might be more comfortable.
After the appointment, we stopped in to visit our friend Hannah, who we met last summer at MD Anderson Proton Center. She is also fighting medulloblastoma, and has been getting her chemo at MD Anderson Cancer Center. It was really nice to see her and her parents, even if it was a quick visit!
Wednesday we had a relaxing day with my parents, and bright and early Thursday morning, Collin and I flew home. Our flight left at 7:30 am, so we were up by 3:30-4:00 am (central time). I chose that flight because it got us back to BWI early enough that Bill had time to pick us up and get us back home before it was time to pick Neya up from school, but it turned out to be too early for Collin. He started crying about ten minutes before we boarded the plane. Once we were on the plane, he went to sleep for a little while, but when he woke up, he was very unhappy. He dozed once or twice more, but when he wasn't dozing, he was whining or crying or throwing a tantrum. Needless to say, it made for a stressful flight. It was pretty out of character for him, so I think he was tired and had just had enough. When we finally got home, he was happier, and when he saw Neya after she got home, he was VERY happy!
Today Collin and I went and picked out his glasses. He looks very cute in the frames we chose, and we were able to get clip-on sunglasses that fit the frames perfectly. Collin was excited to pick out the frames; he said "Now I wear glasses like mommy, and daddy, and Neya!" I hope he still feels excited when they're ready to be picked up in about a week and he realizes he has to wear them all the time!
Thursday, March 14, 2013
Thursday, March 14, 2013
It seems I am WAY overdue for an update!! Basically, things have been going along smoothly since my last post. Collin is well...healthy and happy. He has resumed his therapies, so we are at Hershey three days a week (four when he has clinic, every other week). He had a six to seven month break from his therapies, starting last summer when we went to Houston for radiation, until the beginning of this year when the worst of the radiation fatigue was behind us. I didn't think the time off caused him to lose any abilities, and it seems he continued to move forward even with the break. It has been exciting to watch him resume therapy and to see what he can do now that he wasn't able to do seven months ago!
The end of January brought some snow our way, and Collin decided he wanted to go out and play in it for a few minutes. It was only his second time ever playing in the snow. He played for about 15 minutes; he didn't last long because he minds the cold, but he said he had fun while he was outside!
The first Saturday in February, we spent a day with our THON organization at Penn State Altoona. They held a carnival with games and activities, and as always, we had a blast with the students. It also made us very excited to spend THON weekend with them on February 15-17. Our Altoona group broke the fundraising record for the Penn State Commonwealth campuses by raising over $100k for the Four Diamonds Fund...$105,570.01 to be exact! And the grand total raised for the Four Diamonds Fund by Penn State's Dance MaraTHON for the 2012-2013 school year was over $12 million!!! AMAZING!!!
Collin continues with his maintenance chemo two weeks a month. He's also (unhappily) wearing his eye patch for two hours every day. Collin and I will be flying to Houston for a few days next week for a check-up with Dr. Edmond, the pediatric ophthalmologist at Texas Children's Hospital who did his eye surgery in December. And we're already only a few weeks away from Collin's next MRI at Hershey, scheduled for April 8. In the meantime, we're just trying to be present and enjoy each day we have together!
The end of January brought some snow our way, and Collin decided he wanted to go out and play in it for a few minutes. It was only his second time ever playing in the snow. He played for about 15 minutes; he didn't last long because he minds the cold, but he said he had fun while he was outside!
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| January, 2013 |
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| Collin pie-ing Daddy in the face at the family carnival |
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| Our 6 awesome dancers and us THON weekend 2013 |
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| Water gun battles are a favorite activity at THON, so Collin decided to give it a try. He was NOT a fan of getting wet! |
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| There are many things to see at THON...Collin isn't familiar with Star Wars or Storm Troopers yet; he thought it was "exciting to see robots, Mom!!" |
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| THON 2013...FTK |
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