Maggie continues to heal and returned to work on Tuesday 28 February. With Will at preschool and Maggie at work, I'm alone at home again, albeit with Princess. She's showing signs of arthritis, so part of our federal tax refund (due to be deposited in 10 days!) will go to the veterinarian to see what we can do for her.
In medical news, Will's been fighting a mild, lingering cold. In reality, all three of us have, though after three weeks, I finally seem to be over it. His escalated last Sunday to include a fever, making him irritable and listless for most of the day. Even though he was better on Monday, we took him to his pediatrician's office and were very happy to hear that his temperature was normal, his nose was clear, and his ears and throat weren't showing signs of infection. Even better: we heard it from his actual pediatrician. She's been on medical leave for a few months, but unknown to us, she recently returned to work part-time. When she saw Will on the schedule for Monday evening with the nurse practitioner, she changed it to mid-afternoon with her! It was great to see her again and it made our day.
As it was for most of December, days home alone is my "normal" state at present. I'm hoping to find a part-time job, but I'm imagining a tough time, given my limited availability (9:30am-1:30pm weekdays or Wednesday evenings). I'm also hunting in my boxes of books for an information literacy textbook. As much as I have always dreaded teaching (it's a performance, and I'm a backstage person), I have a bit of a yearning to do so again. Maybe I can develop an information literacy course and offer it as an evening or Saturday program at the local colleges.
In the meantime, I have plenty to do at home. From installing Will's closet organizer to replacing some insulation in the basement, from replacing a dishwasher part to organizing our shed, and from sorting papers to reducing my backlog of reading, there is no shortage of things to keep me busy every day. So busy, I haven't written in this blog much lately. I'm sorry, fans. I'll try to write more often!
Saturday, March 3, 2012
Sunday, February 12, 2012
Progress
It's been a lng time since I posted and I apologize to anyone who mau have been waiting on the edge of their seat. Briefly, I've been tired, I've been away, and I've been tired. Yes, I know said I was tired twice, but I've been very tired. My trip away was a long weekend to Dallas for the American Library Association Mid-winter Meetng. It was nice to see some friends and I am especially thankful for a very nice dinner and conversation with Christina, my former supervisor at Fairfield University. I can't recommend Dallas as a destination, but Wild Salsa served a delicious meal and our server was excellent. I missed Will for the three days I was gone, so I brought home almost $1,000 worth of books. Around one-third are children's books and all were either free or deeply discounted.
"Why is this entry titled 'Progress'?", you ask. Will is advancing, slowly, but surely. His second EEG showed that his medicine is keeping at bay the electrical surges in his brain that likely caused his seizures. His MRI scan showed his thin corpus colosum (the part of the brain that separates the left and right hemispheres) has gotten thicker and his nerves have begun to develop myelination, a protective sleeve around them. Think of an electrical wire; the myelination is the equivalent of the wire's insulation and helps the nerve impulses go to their proper destinations. His neuro-ophthalmologist was impressed with his attention and ability to follow an object.
He loves school and seems to have a friend. Cristian brings Will's favorite toy to him when he gets placed in his chair. Last week, his physical therapist reported that he took a few steps with assistance and his feeding therapist called to say he'd accepted a few offerings of pudding without drooling it back out. He has even begun sleeping flat on his back, cradled by a special "mattress" called a Versa Form positioning pillow. It fits in his crib and is filled with polystyrene beads. We mold it to fit Will and remove the air with an extraction pump. He has even been sleeping (mostly) soundly while fighting a mild cold this week.
We practiced using Will's new mobility or transit chair (okay, the Zippie TS is a wheelchair, but we don't like calling it that) this weekend. It's better for Will than the stroller we've been using, but it's a lot more complicated, using nine (!) more buckles. It's also heavier and while it folds, it's still large and bulky. We will have to practice more before we're confident using it alone and using it for travel by car will require scaling down our packing. Using it for air travel worries me.
All in all, Will is doing better and he continues to get great support from those who care about him: his doctors, therapists, teachers, friends, and family. We're blessed to have the help we get from everyone!
"Why is this entry titled 'Progress'?", you ask. Will is advancing, slowly, but surely. His second EEG showed that his medicine is keeping at bay the electrical surges in his brain that likely caused his seizures. His MRI scan showed his thin corpus colosum (the part of the brain that separates the left and right hemispheres) has gotten thicker and his nerves have begun to develop myelination, a protective sleeve around them. Think of an electrical wire; the myelination is the equivalent of the wire's insulation and helps the nerve impulses go to their proper destinations. His neuro-ophthalmologist was impressed with his attention and ability to follow an object.
He loves school and seems to have a friend. Cristian brings Will's favorite toy to him when he gets placed in his chair. Last week, his physical therapist reported that he took a few steps with assistance and his feeding therapist called to say he'd accepted a few offerings of pudding without drooling it back out. He has even begun sleeping flat on his back, cradled by a special "mattress" called a Versa Form positioning pillow. It fits in his crib and is filled with polystyrene beads. We mold it to fit Will and remove the air with an extraction pump. He has even been sleeping (mostly) soundly while fighting a mild cold this week.
We practiced using Will's new mobility or transit chair (okay, the Zippie TS is a wheelchair, but we don't like calling it that) this weekend. It's better for Will than the stroller we've been using, but it's a lot more complicated, using nine (!) more buckles. It's also heavier and while it folds, it's still large and bulky. We will have to practice more before we're confident using it alone and using it for travel by car will require scaling down our packing. Using it for air travel worries me.
All in all, Will is doing better and he continues to get great support from those who care about him: his doctors, therapists, teachers, friends, and family. We're blessed to have the help we get from everyone!
Saturday, January 14, 2012
A Relaxing Weekend and a Hectic Week
After an uneventful and fairly relaxing weekend, we had a wild week that seemed to get busier with each successive day. On Monday, Maggie and I took Will to school and brought water, orange juice, and apple juice for the staff as part of the PTO's welcome back snack. Maggie wheeled herself into Will's class to watch while I worked on getting the snack ready in the school's small kitchen. After school, Will and I went to get haircuts. He screamed like he was being dismembered and thrashed wildly; I was quiet and still.
Maggie went to work on Tuesday, going to the hospital to see one presentations and attend two budget meetings. Her supervisor took her there before sunrise, then I took Will to school before going to the hospital to meet her since we both needed blood draws for our annual physicals. Once we finally got done, we dashed back to get Will and stopped at home for a little while before driving to Will's pediatrician in Flourtown for a check-up.
Wednesday was as tightly scheduled as Tuesday and in hindsight, it was too much. Will went to school and our housekeeper came to clean. My sister-in-law Marie visited next, to get a resignation letter. Rebecca, a friend from church, then arrived to deliver a meal for us and chatted with Maggie while I prepared chicken nuggets (we saved Rebecca's meal). We were hosting dinner for Maggie's nephew Shawn with his wife and their two young daughters. A favorite meal of Allison's, the nuggets were well-received. I agree that they were good, but I was a bit surprised since I stopped making them and Maggie had to finish while I met with an inspector who was checking our basement for a waterproofing estimate. Amid all the commotion, he surveyed the basement, measured indoors and out, drew various diagrams, and calculated the estimates. Depending on what excavation was needed and what it would reveal, waterproofing would cost almost $20,000, but seeing potential problems, the total would more likely be almost $60,000! We refused to commit to the job as it is far outside our finiancial ability, but he found a serious problem, so I called our contractor the next morning.
Because this week is getting crazier as we go, I didn't call Alex first. We woke early, got ready, and headed out in the cold rain to go to Philadelphia for Will's two appointments at CHildren's Hospital of Philadelphia. First was a neuro-ophthalmology exam at 8:30am, but with the rain making rush hour worse than usual, we called en route and rescheduled. We arrived at 9:15am and checked-in early for an MRI scan, checking Will's head for anything that might be the cause of his seizures. We got breakfast while we waited for our 10:30am appointment, then had as good a hospital visit as we could. Will's intravenous line was placed with only one stick, a first! The nurse assigned to us was very nice and made the whole experience better than expected.
Will recovered from the sedation quickly, returning to us already awake and almost back to his normal self. We were discharged within an hour and dashed north as the afternoon rush began. Driving to Maggie's podiatry appointment next, she got her feet checked and X-rayed, with her cast now to be replaced by an air walker, a supportive boot with an adjustable air bladder. Large and black, it has a blue "button" for inflating and deflating the air bladder. It seems like something Darth Vader would have had to wear as he began his trauma recovery.
With our day's medical exams complete, we went home and arrived seconds after Marie and her family, who were coming to learn how to make eggrolls. I drove to a supermarket for additional eggroll wrappers (Marie and Glenn have four teenaged children) and returned to join the kitchen party. The final products, some with chicken and some with shrimp, were the best we've made so far. I ate at least six!
Concluding the week, I took Will to school and returned home to show our contractor the trouble found Wednesday night. The center of our house appears to have no structural support in the basement! The floor joists are resting on a block wall that doesn't reach the ground below and has no footings. With a new second story on top and winter snows approaching, Alex will install a temporary support next week to keep us safe until we can afford to excavate and rebuild the basement walls. It's an expensive job (estimate still to come) and I believe it will be an on-going project for the next couple of years to make it more affordable.
During Alex's visit, Maggie scheduled an ultrasound exam for her sore left leg to make sure the pain wasn't due to a blood clot and we followed Alex out the driveway to go to Warminster. This week being what it was and today being Friday the 13th, the pain was due to a blood clot and her surgeon recommended going to the emergency room for treatment. I drove her there, then left to meet a delivery of equipment for Will: a bath seat and a gait trainer. After a quick briefing and some signatures, we now have two more large items in the house that need places to live when not in use. Shortly after the delivery, I went to retrieve Will and returned to meet Susan, Will's former (sadly) physical therapist. She adjusted the gait trainer to fit him and gave me tips on continuing his progress. Maggie's sister Sue came next with Marie's daughter Jessie to watch Will while I tried to get some tasks done and she went to get Maggie. Once they got home, Karen, our pastor's wife, delivered a delicious meal of sausage and peppers with salad and cake. Finally, it was time to eat, relax a bit, and try recover from a hectic day and week!
Maggie went to work on Tuesday, going to the hospital to see one presentations and attend two budget meetings. Her supervisor took her there before sunrise, then I took Will to school before going to the hospital to meet her since we both needed blood draws for our annual physicals. Once we finally got done, we dashed back to get Will and stopped at home for a little while before driving to Will's pediatrician in Flourtown for a check-up.
Wednesday was as tightly scheduled as Tuesday and in hindsight, it was too much. Will went to school and our housekeeper came to clean. My sister-in-law Marie visited next, to get a resignation letter. Rebecca, a friend from church, then arrived to deliver a meal for us and chatted with Maggie while I prepared chicken nuggets (we saved Rebecca's meal). We were hosting dinner for Maggie's nephew Shawn with his wife and their two young daughters. A favorite meal of Allison's, the nuggets were well-received. I agree that they were good, but I was a bit surprised since I stopped making them and Maggie had to finish while I met with an inspector who was checking our basement for a waterproofing estimate. Amid all the commotion, he surveyed the basement, measured indoors and out, drew various diagrams, and calculated the estimates. Depending on what excavation was needed and what it would reveal, waterproofing would cost almost $20,000, but seeing potential problems, the total would more likely be almost $60,000! We refused to commit to the job as it is far outside our finiancial ability, but he found a serious problem, so I called our contractor the next morning.
Because this week is getting crazier as we go, I didn't call Alex first. We woke early, got ready, and headed out in the cold rain to go to Philadelphia for Will's two appointments at CHildren's Hospital of Philadelphia. First was a neuro-ophthalmology exam at 8:30am, but with the rain making rush hour worse than usual, we called en route and rescheduled. We arrived at 9:15am and checked-in early for an MRI scan, checking Will's head for anything that might be the cause of his seizures. We got breakfast while we waited for our 10:30am appointment, then had as good a hospital visit as we could. Will's intravenous line was placed with only one stick, a first! The nurse assigned to us was very nice and made the whole experience better than expected.
Will recovered from the sedation quickly, returning to us already awake and almost back to his normal self. We were discharged within an hour and dashed north as the afternoon rush began. Driving to Maggie's podiatry appointment next, she got her feet checked and X-rayed, with her cast now to be replaced by an air walker, a supportive boot with an adjustable air bladder. Large and black, it has a blue "button" for inflating and deflating the air bladder. It seems like something Darth Vader would have had to wear as he began his trauma recovery.
With our day's medical exams complete, we went home and arrived seconds after Marie and her family, who were coming to learn how to make eggrolls. I drove to a supermarket for additional eggroll wrappers (Marie and Glenn have four teenaged children) and returned to join the kitchen party. The final products, some with chicken and some with shrimp, were the best we've made so far. I ate at least six!
Concluding the week, I took Will to school and returned home to show our contractor the trouble found Wednesday night. The center of our house appears to have no structural support in the basement! The floor joists are resting on a block wall that doesn't reach the ground below and has no footings. With a new second story on top and winter snows approaching, Alex will install a temporary support next week to keep us safe until we can afford to excavate and rebuild the basement walls. It's an expensive job (estimate still to come) and I believe it will be an on-going project for the next couple of years to make it more affordable.
During Alex's visit, Maggie scheduled an ultrasound exam for her sore left leg to make sure the pain wasn't due to a blood clot and we followed Alex out the driveway to go to Warminster. This week being what it was and today being Friday the 13th, the pain was due to a blood clot and her surgeon recommended going to the emergency room for treatment. I drove her there, then left to meet a delivery of equipment for Will: a bath seat and a gait trainer. After a quick briefing and some signatures, we now have two more large items in the house that need places to live when not in use. Shortly after the delivery, I went to retrieve Will and returned to meet Susan, Will's former (sadly) physical therapist. She adjusted the gait trainer to fit him and gave me tips on continuing his progress. Maggie's sister Sue came next with Marie's daughter Jessie to watch Will while I tried to get some tasks done and she went to get Maggie. Once they got home, Karen, our pastor's wife, delivered a delicious meal of sausage and peppers with salad and cake. Finally, it was time to eat, relax a bit, and try recover from a hectic day and week!
Friday, January 6, 2012
A New Week, a New Month, a New Year
We spent New Year's Day at home, quietly "celebrating", if one could call it that. Maggie continues to convalesce on the sofa, Will is his happy self, and I'm tired of waking so early. The night owl in me can't be eliminated, but it conflicts with getting up early to feed Will, since Maggie can't do so for at least three weeks, probably four. Her first follow-up on Monday went well, with everything looking good, though her pain is persisting. We had friends bring us lunch and help me with a couple of home tasks (caulk a window, store our firepit, repair our back porch steps) and others stopped by with encouragement.
Will returned to school on Tuesday and had a nice day, but became the school's champion pooper on Wednesday. It was so bad, the staff called me to tell me about it, even though I was just getting ready to go get him. It seems that Will's pants were visibly wet, so they took him to the changing table and found that the wetness wasn't urine. Will soils diapers in liquid form and this time the volume was so great, it flowed out, down his legs, and into his braces and shoes. They said that they'd never seen anything like it. I said, "Welcome to our world!" It was so messy that they were still talking about it Thursday morning!
Wednesday night we tried a new recipe: herb-roasted chicken. it was quite delicious and since the bird was large, we invited Maggie's sister and brother-in-law, Marie and Glenn, over to help us eat it. They agreed it was excellent and asked me to copy the recipe for them. Yummy and easy, an winning combination!
Maggie couldn't stand the ongoing pain, so I convinced her to call and schedule another follow-up. Thursday afternoon revealed that the cast and the dressings under it were too tight and caused a large blood blister. No lasting damage and the surgeon agreed to remove the front half of the cast to relieve the pressure, strapping the back half on with elastic bandages for continued support. She is much better now.
Friday saw us at a new activity: the class swim trip. Maggie wasn't ready to attend, so I drove Will to the Newtown Athletic Club and joined Will's teacher, nurse, physical therapist, a class aide, and two classmates for the monthly swim. The water was very nice and Will appears to have grown as his lifejacket was tight (he was held tight like meat in a sausage casing!). I ran five errands (bill payment, paper recycling, bill mailing, car refueling, and prescription pick-up) on the way home, then bought a quick lunch at McDonald's for Maggie and me. We relaxed for a little while, then loaded ourselves into the Toyota and headed to Philadelphia for Will's regular gastroenterology exam. Nothing new on the digestive front, but we confirmed his growth. He weighed 29 pounds, 1 ounce and is now 38.5 inches tall, a marked improvement on the growth curve. We were pleased.
The evening brought Thomas and Madison ("Maddy"), one of Maggie's nephews and his girlfriend, over for dinner. I prepared salad, garlic bread, and pasta with two sauces (she's a vegetarian). All said it was tasty, though I overcooked the bread. We had a nice talk about their college plans in the fall (he's attending Bucks County Community College while she's going to Temple University), dogs, travel, New Year's Eve, and Will. It was a good evening and we're hoping to have them visit again soon.
Will returned to school on Tuesday and had a nice day, but became the school's champion pooper on Wednesday. It was so bad, the staff called me to tell me about it, even though I was just getting ready to go get him. It seems that Will's pants were visibly wet, so they took him to the changing table and found that the wetness wasn't urine. Will soils diapers in liquid form and this time the volume was so great, it flowed out, down his legs, and into his braces and shoes. They said that they'd never seen anything like it. I said, "Welcome to our world!" It was so messy that they were still talking about it Thursday morning!
Wednesday night we tried a new recipe: herb-roasted chicken. it was quite delicious and since the bird was large, we invited Maggie's sister and brother-in-law, Marie and Glenn, over to help us eat it. They agreed it was excellent and asked me to copy the recipe for them. Yummy and easy, an winning combination!
Maggie couldn't stand the ongoing pain, so I convinced her to call and schedule another follow-up. Thursday afternoon revealed that the cast and the dressings under it were too tight and caused a large blood blister. No lasting damage and the surgeon agreed to remove the front half of the cast to relieve the pressure, strapping the back half on with elastic bandages for continued support. She is much better now.
Friday saw us at a new activity: the class swim trip. Maggie wasn't ready to attend, so I drove Will to the Newtown Athletic Club and joined Will's teacher, nurse, physical therapist, a class aide, and two classmates for the monthly swim. The water was very nice and Will appears to have grown as his lifejacket was tight (he was held tight like meat in a sausage casing!). I ran five errands (bill payment, paper recycling, bill mailing, car refueling, and prescription pick-up) on the way home, then bought a quick lunch at McDonald's for Maggie and me. We relaxed for a little while, then loaded ourselves into the Toyota and headed to Philadelphia for Will's regular gastroenterology exam. Nothing new on the digestive front, but we confirmed his growth. He weighed 29 pounds, 1 ounce and is now 38.5 inches tall, a marked improvement on the growth curve. We were pleased.
The evening brought Thomas and Madison ("Maddy"), one of Maggie's nephews and his girlfriend, over for dinner. I prepared salad, garlic bread, and pasta with two sauces (she's a vegetarian). All said it was tasty, though I overcooked the bread. We had a nice talk about their college plans in the fall (he's attending Bucks County Community College while she's going to Temple University), dogs, travel, New Year's Eve, and Will. It was a good evening and we're hoping to have them visit again soon.
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