Noelle had surgery yesterday for the bone infection in her right leg. It was supposed to take place today, but apparently everything was ready yesterday so the doctor went ahead and did it then.
The hope was to avoid amputation since the infection had entered deep into the bone and was raging away. The only response seemed to be amputation: her leg or her life. (I have been through that before with Shura: his legs or his life were the choice we had to make in 1995, and we chose, obviously, his life. He had a double amputation, but it has not slowed him down.) While one can live with amputation, clearly the preference of any rational person is to avoid it where possible.
We were delighted when a new doctor appeared on the scene before the amputation was carried out. This doctor, newly educated and coming south from a medical center and school north of us, had some fancy ideas about surgically reducing or eliminating the infection from inside the bone and set up the surgery for today, uh, yesterday. The situation going into surgery was that amputation would be avoided if at all possible. So, we were hopeful that the better of the two options would be the outcome.
At work, people told me that they were surprised that I was so calm about all this, especially about living with special needs kids (two children, two grandchildren) and accepting them as they are. Well, as they are is a pretty neat thing. I would not trade them for anyone else. When they were growing up, they were easy to take care. Oh, yes, there were the 30+ operations, medical supplies, special education in one case, and on and on. However, these kids are grateful for every good thing and every attempted good thing whether or not it is successful. They are happy and find the humor even in the things that can and do go wrong. They support each other, help their friends, and are among the first to lend a hand to strangers -- and they did that even as children and, perhaps amazingly, as teenagers. They never displayed any interest in drugs, alcohol, sneaking away from home, sassing their parents, new clothes, expensive gifts, or shiny toys. Rather, they were bonded to each other and thought that just about the best gift anyone could have is love. So, nah, I don't think I would trade any one of them in on a physically perfect model!
Back to the current day's events, actually, I was not worried, and that seems to surprise many of my co-workers. What they don't realize is that God has taken care of Noelle since the day she was born. Every time she has been given one chance in three, 25%, etc., she has always come out on the positive side. The trust bank that I have with God by now will take many, many withdrawals to deplete!
As for yesterday's surgery, it just added to that trust bank. Once inside Noelle's leg, the doctor found that for some surprising (?) reason, the infection had significantly abated. No need for any fancy surgery! All he had to do was install a pump to remove the rest. Noelle should be released home tomorrow. It may take several weeks of the pump doing its task before it can be removed and our trip to Ohio next month might be quite interesting as a result, but I don't mind dealing with the pump. Having it is a reminder that we won a very important struggle.
That's another reason I want to keep these kids. Their experiences keep reminding me how powerful (and good) God is!
Followers
Thursday, April 29, 2010
Saturday, April 24, 2010
Beyond Why Not Me?
Recently, in boarding a small plane, I found myself in seat 11A. (Now, this is, of course, better than the seat I once held on another small plane: 13A. In that case, the odd thing about 13A was that the last row was 11. I had begun to wonder whether my seat was on the wing or in the bathroom, when the stewardess told me to take any open seat; seat 13A is the number used when planes are overbooked, which I find to be an interesting piece of trivia that I will keep in mind the next time I am assigned seat 13A.) As it turned out, seat 11A was a non-reclining seat, located in a row of five seats across the back of the plane. It was almost like riding a bus, but as good fortune would have it, I turned out to be alone, so I had the comfort of four seats. Actually, as a premier executive flyer on United Airlines, I was entitled to much better seats, but somehow my frequent flier number had been missed by the ticket agent and therefore I had been put in with the rank and file, in the rankest position, actually. I eyed passengers with blue tickets as they sat down in better seats than I, with my gold card, had been accorded. Then I thought, someone has to sit in row 11, so why not me? That thought made my flight back much more pleasant than it would have been had I asked the why-me question -- and I really enjoyed the four-seat expanse.
The why-not-me question avoids a lot of stress and angst. For example, when our children (Noelle and Doah) were born with birth defects, I never asked why me. I cannot tell you why that question never crossed my mind; it just never did. Neither did Donnie think of that question. If we were to have asked a question, it would have been why not us.
The next generation is following that same path. Shane and Lemony first had a baby with hydronephrosis. That was Nathaniel, born Christmas day 2001. For a year, his urine was collected externally. Then he had five surgeries, the last of which "took." Every year he returns to San Francisco for an annual check-up. He has four more years to go, after which he will be declared "cured." Yeah! Last year at this time, Nathaniel's sister Nikolina showed up -- disassembled. Readers have followed her progress from unlikely-to-live to cheerful and spunky one-year old, who has met all her intellectual milestones. The physical ones are a little different. Following her August neurosurgery, doctors had been optimistic that she would be able to walk, but it turns out that the optimism was misplaced. Now a year old, Nikolina has not had any desire to stand. Today, at Nathaniel's baseball game, as Nikolina sat in her stroller, paying no attention to her right leg which had somehow ended up propped at an angle against the side of the stroller, Shane confirmed that Nikolina does not have feeling in her legs. So, it looks like she may be paraplegic like her Aunt Noelle, our younger daughter, now 32. It will be interesting to find out how much more doctors will be able to do for Nikolina than they were able to do for Noelle, who was in braces for 21 years and then had to give them up for a wheelchair. And no, neither Shane and Lemony, as the parents, nor Donnie and I, as the grandparents, have any desire to search for an answer to the question, why me? These things happen; they are a combination of genetics, environmental influences, and pure chance. So, why not us? We all love both these kids, and like their Aunt Noelle and Uncle Doah, they are likely to make their own kind of positive contribution to the world around them.
Now Lizzie has decided that, given her 40% chance of having a baby with birth defects, she would prefer to adopt rather than create another handicapped child. Recently she told me that she has encountered a dilemma: whether to adopt a "normal" child or a child with birth defects. She feels that she would cope easier with combining parenting and work if she were to adopt a child with just the average range of health complaints. On the other hand, she feels that she should develop a handicapped child because as sister to two handicapped adults and aunt to two handicapped children, in addition to her background in neuroscience, brain pathology, and biology, she is uniquely qualified to parent a child with nearly any kind of birth defect. I think she has just taken a step beyond her parents and why-not-me thinking! I don't quite know how to name that step but I guess it might be something like, "Send it my way; I'm ready!" Think how many parentless handicapped kids would be adopted if everyone would/could take that step!
(Sorry for the double-posting for those of you who also read Blest Atheist -- it was too difficult to decide whether this was a general interest post [BA] or a family post [Clan of Mahlou], so I avoided the need to decide by posting in both locations although I try not to do that very often.)
The why-not-me question avoids a lot of stress and angst. For example, when our children (Noelle and Doah) were born with birth defects, I never asked why me. I cannot tell you why that question never crossed my mind; it just never did. Neither did Donnie think of that question. If we were to have asked a question, it would have been why not us.
The next generation is following that same path. Shane and Lemony first had a baby with hydronephrosis. That was Nathaniel, born Christmas day 2001. For a year, his urine was collected externally. Then he had five surgeries, the last of which "took." Every year he returns to San Francisco for an annual check-up. He has four more years to go, after which he will be declared "cured." Yeah! Last year at this time, Nathaniel's sister Nikolina showed up -- disassembled. Readers have followed her progress from unlikely-to-live to cheerful and spunky one-year old, who has met all her intellectual milestones. The physical ones are a little different. Following her August neurosurgery, doctors had been optimistic that she would be able to walk, but it turns out that the optimism was misplaced. Now a year old, Nikolina has not had any desire to stand. Today, at Nathaniel's baseball game, as Nikolina sat in her stroller, paying no attention to her right leg which had somehow ended up propped at an angle against the side of the stroller, Shane confirmed that Nikolina does not have feeling in her legs. So, it looks like she may be paraplegic like her Aunt Noelle, our younger daughter, now 32. It will be interesting to find out how much more doctors will be able to do for Nikolina than they were able to do for Noelle, who was in braces for 21 years and then had to give them up for a wheelchair. And no, neither Shane and Lemony, as the parents, nor Donnie and I, as the grandparents, have any desire to search for an answer to the question, why me? These things happen; they are a combination of genetics, environmental influences, and pure chance. So, why not us? We all love both these kids, and like their Aunt Noelle and Uncle Doah, they are likely to make their own kind of positive contribution to the world around them.
Now Lizzie has decided that, given her 40% chance of having a baby with birth defects, she would prefer to adopt rather than create another handicapped child. Recently she told me that she has encountered a dilemma: whether to adopt a "normal" child or a child with birth defects. She feels that she would cope easier with combining parenting and work if she were to adopt a child with just the average range of health complaints. On the other hand, she feels that she should develop a handicapped child because as sister to two handicapped adults and aunt to two handicapped children, in addition to her background in neuroscience, brain pathology, and biology, she is uniquely qualified to parent a child with nearly any kind of birth defect. I think she has just taken a step beyond her parents and why-not-me thinking! I don't quite know how to name that step but I guess it might be something like, "Send it my way; I'm ready!" Think how many parentless handicapped kids would be adopted if everyone would/could take that step!
(Sorry for the double-posting for those of you who also read Blest Atheist -- it was too difficult to decide whether this was a general interest post [BA] or a family post [Clan of Mahlou], so I avoided the need to decide by posting in both locations although I try not to do that very often.)
Saturday, April 17, 2010
Happy Birthday, Nikolina
She did it! We did it! Today marked a full year since Nikolina was born. She has survived! Step by step, it happened: first, she survived her first day, then her first week, then her first month, and now her first year.
It has certainly been a challenging year, especially for Shane and Lemony. First, a baby born disassembled. Then, Shane's peritonitis from a burst appendix that had us worried for a few days about his survival. Finally, as the year approached an end, Shane's unexpected job loss and six weeks of unemployment, worried about how to handle health care costs.
Then April came. On April 1, Shane began a new old job (was reinstated to a job he had held for 12 years at California Highway Patrol but had left for a higher salary), and then today, Nikolina marked an important achievement. A full year of life when only one doctor, her attending physician, saw any hope of that. She is a highlight of his career. He even set up a website about her to help other doctors around the world save OEIS Complex babies.
Nikolina still has many challenges ahead, including some more surgeries, but one would never know it. She is a very happy little girl, smiling and laughing most of the time. Here are some pictures from today's birthday party. (They were taken by Doah. Unfortunately, I could not go. I brought a foreign germ home from a recent business trip, and we still have to protect Nikolina from exposure to germs. It's a small sacrifice to make to keep her alive!) In order: Nikolina, Brother Nathaniel, Dad Shane and Grandpa Donnie, Grandpa Joaquin, and Momma Lemony.
It has certainly been a challenging year, especially for Shane and Lemony. First, a baby born disassembled. Then, Shane's peritonitis from a burst appendix that had us worried for a few days about his survival. Finally, as the year approached an end, Shane's unexpected job loss and six weeks of unemployment, worried about how to handle health care costs.
Then April came. On April 1, Shane began a new old job (was reinstated to a job he had held for 12 years at California Highway Patrol but had left for a higher salary), and then today, Nikolina marked an important achievement. A full year of life when only one doctor, her attending physician, saw any hope of that. She is a highlight of his career. He even set up a website about her to help other doctors around the world save OEIS Complex babies.
Nikolina still has many challenges ahead, including some more surgeries, but one would never know it. She is a very happy little girl, smiling and laughing most of the time. Here are some pictures from today's birthday party. (They were taken by Doah. Unfortunately, I could not go. I brought a foreign germ home from a recent business trip, and we still have to protect Nikolina from exposure to germs. It's a small sacrifice to make to keep her alive!) In order: Nikolina, Brother Nathaniel, Dad Shane and Grandpa Donnie, Grandpa Joaquin, and Momma Lemony.
Friday, April 9, 2010
A Big Miao from the Littlest Mahlous
Yes, the little Mahlous would be our cats, and they are a populous group that has grown and decreased and grown. Three are living with us now. That would be Murjan (whose name is Arabic for coral because he is white coral color with red coral markings on his head and tail), Intrepid (appropriately named, as I will explain later), and Simone (the derivation of whose name is a matter of phonetics; we started out with a similar Russian name that Donnie could not pronounce and then changed it to a similar-sounding French name which he could). Here is a brief summary of the history of each of these little Mahlous.
Jade-eyed Murjan is the alpha cat. As such, he is both a great watch cat and daddy cat. With visitors, he guards the door and makes sure entrants are okay for the other cats, who usually scamper away when the doorbell rings, to be around. Once someone passes Murjan's inspection, he is quite friendly, crawling into their laps and expecting to be petted. He will stay there as long as he is allowed. Once when my boss came to visit, Murjan was asleep on the top of the cat tree. As my boss quietly sat talking to me and eating an ice cream, Murjan woke up, and with a questioning "mwhuh?" he leaped from the top of the cat tree onto my boss's lap, sending the ice cream cone flying! That's Murjan. He talks. All Jordanian cats talk, and Murjan is a Jordanian. He has an extensive vocabulary for a cat that includes differing sounds to indicate confusion, intent to jump up, intent to jump down (yes, a different tone from that he uses for jumping up), request for treats, request for food (yes, a different tone from what he uses for treats), cussing me out (usually for an extended absence), and a few more. When I am home, wherever I am, there is Murjan. He follows me like a puppy dog. He also likes to have his belly rubbed as soon as I come in the door and lies on his back, with his paws up, like a puppy dog, begging for his belly rub. He raised both Interprid (who came to us around one month of age) and Simone who was several months old when we rescued her. He groomed them, let them sleep between his paws, and taught them to talk. (More pictures at the end of this post.)
Blessed with gorgeous yellow eyes ringed by brown that matches his fur, Intrepid, or Trep, as we call him, was found abandoned in a garden by one of the professors in Jordan. We think that his mother died because when we had another cat spayed at home (in Jordan, vets come to the house), Trep was terrified when the cat was out from the anesthesia. Trep looked more like a bird than a cat when we got him, and he ate non-stop for two weeks, even sleeping beside the food bowl. Fortunately, he grew secure in the thought that he would have another meal and was able to move into other rooms of the house, where, unfortunately, he discovered plants. He loved to run halfway across our near-house-sized living room, hesitate to gather power, and then spring the rest of the way into the large potted plants, tipping and usually breaking them. We finally gave up on large plants. Small plants he ate. So we gave up on those, too. We introduced a plastic plant. He ate that, too, and required some help from the vet to survive that experience. Hence, the name Intrepid. Unlike extroverted Murjan, Trep is quite an introvert. With us, he likes to cuddle but only at his times and on his terms. He disappears when company shows up, and we are usually quite abashed when we have to answer the question, "What is the name of the fraidy-cat quivering under the couch," with "Intrepid!"
Trep also has a shoe fetish. He loves shoes. Any shoes, especially those that have been very recently removed from their owners' feet. He loves putting his paws inside shoes and pretending to wear them. He will sometimes sleep beside shoes as if they were a security blanket. Trep also loves little round things -- little round red things (raspberries, tomatoes, strawberries), little round blue things (blueberries), little round black things (olives, blackberries), and the like. He sneaks up on the eater, and soon, stealthily, his paw is in the bowl, flipping out the little round thing which he then bats around the house until it "dies." Those things he does not eat. However, he does eat potato chips and crackers and once stole an entire package of deli ham from the grocery bag, tiptoeing away with it in his mouth, almost getting away with it but I caught his slinky movement out of the corner of my eye. Trapped, Trep! (More pictures at the end of this post.)
Our latest addition is Simone, a blue-eyed, Himalayan-Tabby blend. Simone was a feral cat, local to San Ignatio, who simply appeared one day at our house. She made herself a home under the house and would pop out whenever I placed food outside for the general collection of neighborhood feral cats. When we moved from that house to our current house about six blocks away, the other feral cats moved on to other feeders. (San Ignatio is full of feral cat feeders.) Simone, however, did not move on, and as we were cleaning the empty house, curiosity pulled her inside. I quickly shut the door. She shot around the house wildly until I trapped her inside an empty bedroom. Still, I could not get close enough to her to trap her, and she deftly avoided trapping herself in the cat trap that I placed in the bedroom. Well, there was nothing to do but sleep with her in the empty room overnight so that she would become more comfortable with me. I fell asleep on the hard floor pretty easily since I can sleep anywhere, but until my eyes shut, I could see that Simone was sleeping with one eye open. In the morning she had calmed down a little although she warily stayed just out of reach. Finally, I lunged, grabbed her by the nape of the neck, and with one smooth movement placed her inside the cat carrier I had also placed in the room. Off we went to the vet, whom she bit, definitely not endearing herself to him. Declared clean of disease, spayed, and trapped inside the cat carrier, she accompanied me to our new home, where she met Murjan and Intrepid. After expressing their consternation that they would have to share their home with a newcomer, Murjan moved in as the alpha cat and started grooming Simone's tangled, long hair. Intrepid joined in, learning from Murjan how to be a good big brother. Now all three romp through the house like a bonded family.
Additional pictures of the little Mahlous; check back in a few weeks for more.
Jade-eyed Murjan is the alpha cat. As such, he is both a great watch cat and daddy cat. With visitors, he guards the door and makes sure entrants are okay for the other cats, who usually scamper away when the doorbell rings, to be around. Once someone passes Murjan's inspection, he is quite friendly, crawling into their laps and expecting to be petted. He will stay there as long as he is allowed. Once when my boss came to visit, Murjan was asleep on the top of the cat tree. As my boss quietly sat talking to me and eating an ice cream, Murjan woke up, and with a questioning "mwhuh?" he leaped from the top of the cat tree onto my boss's lap, sending the ice cream cone flying! That's Murjan. He talks. All Jordanian cats talk, and Murjan is a Jordanian. He has an extensive vocabulary for a cat that includes differing sounds to indicate confusion, intent to jump up, intent to jump down (yes, a different tone from that he uses for jumping up), request for treats, request for food (yes, a different tone from what he uses for treats), cussing me out (usually for an extended absence), and a few more. When I am home, wherever I am, there is Murjan. He follows me like a puppy dog. He also likes to have his belly rubbed as soon as I come in the door and lies on his back, with his paws up, like a puppy dog, begging for his belly rub. He raised both Interprid (who came to us around one month of age) and Simone who was several months old when we rescued her. He groomed them, let them sleep between his paws, and taught them to talk. (More pictures at the end of this post.)
Blessed with gorgeous yellow eyes ringed by brown that matches his fur, Intrepid, or Trep, as we call him, was found abandoned in a garden by one of the professors in Jordan. We think that his mother died because when we had another cat spayed at home (in Jordan, vets come to the house), Trep was terrified when the cat was out from the anesthesia. Trep looked more like a bird than a cat when we got him, and he ate non-stop for two weeks, even sleeping beside the food bowl. Fortunately, he grew secure in the thought that he would have another meal and was able to move into other rooms of the house, where, unfortunately, he discovered plants. He loved to run halfway across our near-house-sized living room, hesitate to gather power, and then spring the rest of the way into the large potted plants, tipping and usually breaking them. We finally gave up on large plants. Small plants he ate. So we gave up on those, too. We introduced a plastic plant. He ate that, too, and required some help from the vet to survive that experience. Hence, the name Intrepid. Unlike extroverted Murjan, Trep is quite an introvert. With us, he likes to cuddle but only at his times and on his terms. He disappears when company shows up, and we are usually quite abashed when we have to answer the question, "What is the name of the fraidy-cat quivering under the couch," with "Intrepid!"
Trep also has a shoe fetish. He loves shoes. Any shoes, especially those that have been very recently removed from their owners' feet. He loves putting his paws inside shoes and pretending to wear them. He will sometimes sleep beside shoes as if they were a security blanket. Trep also loves little round things -- little round red things (raspberries, tomatoes, strawberries), little round blue things (blueberries), little round black things (olives, blackberries), and the like. He sneaks up on the eater, and soon, stealthily, his paw is in the bowl, flipping out the little round thing which he then bats around the house until it "dies." Those things he does not eat. However, he does eat potato chips and crackers and once stole an entire package of deli ham from the grocery bag, tiptoeing away with it in his mouth, almost getting away with it but I caught his slinky movement out of the corner of my eye. Trapped, Trep! (More pictures at the end of this post.)
Our latest addition is Simone, a blue-eyed, Himalayan-Tabby blend. Simone was a feral cat, local to San Ignatio, who simply appeared one day at our house. She made herself a home under the house and would pop out whenever I placed food outside for the general collection of neighborhood feral cats. When we moved from that house to our current house about six blocks away, the other feral cats moved on to other feeders. (San Ignatio is full of feral cat feeders.) Simone, however, did not move on, and as we were cleaning the empty house, curiosity pulled her inside. I quickly shut the door. She shot around the house wildly until I trapped her inside an empty bedroom. Still, I could not get close enough to her to trap her, and she deftly avoided trapping herself in the cat trap that I placed in the bedroom. Well, there was nothing to do but sleep with her in the empty room overnight so that she would become more comfortable with me. I fell asleep on the hard floor pretty easily since I can sleep anywhere, but until my eyes shut, I could see that Simone was sleeping with one eye open. In the morning she had calmed down a little although she warily stayed just out of reach. Finally, I lunged, grabbed her by the nape of the neck, and with one smooth movement placed her inside the cat carrier I had also placed in the room. Off we went to the vet, whom she bit, definitely not endearing herself to him. Declared clean of disease, spayed, and trapped inside the cat carrier, she accompanied me to our new home, where she met Murjan and Intrepid. After expressing their consternation that they would have to share their home with a newcomer, Murjan moved in as the alpha cat and started grooming Simone's tangled, long hair. Intrepid joined in, learning from Murjan how to be a good big brother. Now all three romp through the house like a bonded family.
Additional pictures of the little Mahlous; check back in a few weeks for more.
Tuesday, April 6, 2010
Easter Memories Redux
I posted the pictures below on the Blest Atheist blog earlier this morning, hence the "redux". Folks there seemed to like them, so decided that those who follow The Clan of Mahlou might also enjoy them, especially since they include Clan pictures. (Sorry for the duplication for those who follow both blogs; I generally segregate subject matter.)
(1) Photos around our mission church --
the garden path behind the church:
the church archway, including (a) one of the inhabitants, a mourning dove; (b) looking north, with Doah; (c) looking south:
views of the historic part of town from the church archway:
the church cemetery:
scenes from the front of the church:
(2) Sula, our parish cat --
in the church garden:
entering the old monastery:
inside the old monastery:
asleep on a parishioner's coat during the Eucharist (every parishioner with a coat is considered a friend by Sula):
(3) Our town's aristocracy:
(4) Donnie, Doah, Noelle, and I spent the afternoon at play, pigging out at Easter brunch at Hometown Buffet in nearby Salts:
(5) Meanwhile, our lazy little Mahlous (Intrepid, Murjan, and Simone) spent the afternoon at rest:
Hoping you had as delightful an Easter as we did!
(1) Photos around our mission church --
the garden path behind the church:
the church archway, including (a) one of the inhabitants, a mourning dove; (b) looking north, with Doah; (c) looking south:
views of the historic part of town from the church archway:
the church cemetery:
scenes from the front of the church:
(2) Sula, our parish cat --
in the church garden:
entering the old monastery:
inside the old monastery:
asleep on a parishioner's coat during the Eucharist (every parishioner with a coat is considered a friend by Sula):
(3) Our town's aristocracy:
(4) Donnie, Doah, Noelle, and I spent the afternoon at play, pigging out at Easter brunch at Hometown Buffet in nearby Salts:
(5) Meanwhile, our lazy little Mahlous (Intrepid, Murjan, and Simone) spent the afternoon at rest:
Hoping you had as delightful an Easter as we did!
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