It looks like Alison has another cold, or the cold she had before never left, I'm not sure which. Whatever it is, it's been going on since the middle of February. She's coughing and sneezing again. She needs sleep desperately, yet keeps waking up coughing. I thought she might have felt a little warm this morning, but a short while later I thought she felt fine. Since she's too squirmy to do it any other way than rectally, I didn't take --or have Kevin take-- her temperature before nap because I didn't want to risk making her poop and wake up early. It didn't really matter because she started coughing about an hour after she went to sleep. That kept up, off and on, for nearly half an hour and then stopped for about as long and seems to be starting again. :(
It's cold, cloudy and damp today, so I guess we'll be walking at the mall. While fresh air wouldn't hurt, being out in the windy cold probably isn't what the doctor would order. I hope we can keep it from getting bad enough to need Albuterol treatments again. Those make all of us miserable.
I hope we're able to kick this thing for good soon. We're going to visit Kevin's dad in less than a month and I can't help but think it would not be a good idea for him to be around a sick kid while going through chemotherapy and radiation. On the other hand, I don't want to keep her away from him --or stay home with her-- because we have no way of knowing if this is the last chance he'll have to see her.
Wednesday, March 31, 2004
Tuesday, March 30, 2004
Much Rambling About Nothing
Many days I say to myself "I need to make an entry in my journal." Then I get a free minute to do so and can't come up with anything to write about. So this will probably be another mish-mash of whatever comes to mind in the next few minutes.
Update on the prissy princess: She still doesn't like to put her hands down in the grass, but mud is ok. Dog poop is even better! Kevin was supposed to have gone around the backyard and picked up all the dog poop from the winter before we went out there to play. I spent 20 minutes following Alison around and pointing out the piles he missed after he had supposedly cleaned it all up. He finally got most of it and then the dog decided it was time to make another deposit. All was well until Alison headed toward Kevin while he was cleaning it up. In his attempt to keep her back until he was done, he ended up tripping her and she fell right into the poop......and could have cared less. She threw a major hissy fit when I took her in to wash her hands.
Kevin's dad started chemo and radiation last week. He talked to him Friday night and things were going all right. He's driving himself to Richmond for his appointments (and hour away), but does have his father-in-law at least riding along with him. I don't forsee that lasting much past this week --his driving himself, I mean-- but I could be wrong. We're finalizing plans to travel down to see him next month, after Easter. We're coordinating it with Kevin's brother, Todd. Todd has all of the things from his apartment stored in the sheds at "the other house" --he had to give up his apartment and move in with his ex-inlaws when his unemployment ran out and he still couldn't find another job-- and they are trying to sell that house, so he needs to get his stuff into a storage unit. He was supposed to do it the weekend after we all found out about the cancer, so obviously that didn't happen. Dad still won't be able to help move anything, but they figure between Kevin, Todd, and their other brother, Jason, they ought to be able to handle it.
I'm working on Easter baskets for Alison and our neice and nephews. Last year I bought baskets and put stuff in them. I've decided I can't afford to buy new baskets every year, so I'm making the baskets this year. I made a box out of posterboard and am making a woven covering with untwisted paper ribbon. I think they'll look pretty nice and I've only spent about $6 to make four baskets. I'm keeping up the idea of not filling the baskets with a lot of candy. Last year they got apple chips, banana chips, yogurt covered pretzels and a book. This year, they're getting yogurt covered pretzels, yogurt covered rasins, and some cookies --because I got a recipes for some really cute ones. I may try to do apple or banana chips again, too. They were a big hit with the kids and the parents appreciated not getting more candy. If I can find nice, inexpensive books, they'll get them, too.
Month one of ttc was a bust. We knew it would be, so it wasn't much of a shock. The thing I hate about ttc is that if you're serious about it, you have a very small window of opportunity, and therefore need to be ready to take advantage of it whether you're in the mood or not. Interestingly enough, I think that's the part my husband likes the best. He absolutely knows he's going to get lucky at least twice during that time.
On the positive side, I have officially lost 19 pounds. I have only 11 more pounds to go to reach my first goal. And I have 6 weeks to do it in. The problem I have now is I need to come up with a dress to wear for Easter. The dress I wore last year is waaayyy to big now -- it was a little big last year. I have another dress that I could wear, but it's like 6 years old and I was thinking that perhaps I want something a little more current. But I like the dress and I'm so excited that it actually fits again. Besides, I hate having to take Alison with me when I go clothes shopping, and by the time Kevin is home and we're done with dinner the last thing I want to do is go clothes shopping. Maybe I'll find time to get a new dress before my friend Nancy's wedding.
Update on the prissy princess: She still doesn't like to put her hands down in the grass, but mud is ok. Dog poop is even better! Kevin was supposed to have gone around the backyard and picked up all the dog poop from the winter before we went out there to play. I spent 20 minutes following Alison around and pointing out the piles he missed after he had supposedly cleaned it all up. He finally got most of it and then the dog decided it was time to make another deposit. All was well until Alison headed toward Kevin while he was cleaning it up. In his attempt to keep her back until he was done, he ended up tripping her and she fell right into the poop......and could have cared less. She threw a major hissy fit when I took her in to wash her hands.
Kevin's dad started chemo and radiation last week. He talked to him Friday night and things were going all right. He's driving himself to Richmond for his appointments (and hour away), but does have his father-in-law at least riding along with him. I don't forsee that lasting much past this week --his driving himself, I mean-- but I could be wrong. We're finalizing plans to travel down to see him next month, after Easter. We're coordinating it with Kevin's brother, Todd. Todd has all of the things from his apartment stored in the sheds at "the other house" --he had to give up his apartment and move in with his ex-inlaws when his unemployment ran out and he still couldn't find another job-- and they are trying to sell that house, so he needs to get his stuff into a storage unit. He was supposed to do it the weekend after we all found out about the cancer, so obviously that didn't happen. Dad still won't be able to help move anything, but they figure between Kevin, Todd, and their other brother, Jason, they ought to be able to handle it.
I'm working on Easter baskets for Alison and our neice and nephews. Last year I bought baskets and put stuff in them. I've decided I can't afford to buy new baskets every year, so I'm making the baskets this year. I made a box out of posterboard and am making a woven covering with untwisted paper ribbon. I think they'll look pretty nice and I've only spent about $6 to make four baskets. I'm keeping up the idea of not filling the baskets with a lot of candy. Last year they got apple chips, banana chips, yogurt covered pretzels and a book. This year, they're getting yogurt covered pretzels, yogurt covered rasins, and some cookies --because I got a recipes for some really cute ones. I may try to do apple or banana chips again, too. They were a big hit with the kids and the parents appreciated not getting more candy. If I can find nice, inexpensive books, they'll get them, too.
Month one of ttc was a bust. We knew it would be, so it wasn't much of a shock. The thing I hate about ttc is that if you're serious about it, you have a very small window of opportunity, and therefore need to be ready to take advantage of it whether you're in the mood or not. Interestingly enough, I think that's the part my husband likes the best. He absolutely knows he's going to get lucky at least twice during that time.
On the positive side, I have officially lost 19 pounds. I have only 11 more pounds to go to reach my first goal. And I have 6 weeks to do it in. The problem I have now is I need to come up with a dress to wear for Easter. The dress I wore last year is waaayyy to big now -- it was a little big last year. I have another dress that I could wear, but it's like 6 years old and I was thinking that perhaps I want something a little more current. But I like the dress and I'm so excited that it actually fits again. Besides, I hate having to take Alison with me when I go clothes shopping, and by the time Kevin is home and we're done with dinner the last thing I want to do is go clothes shopping. Maybe I'll find time to get a new dress before my friend Nancy's wedding.
Tuesday, March 23, 2004
No More Prissy Princess?
This morning was reasonably warm (and by that I mean the temp was higher than 40 at 11:00), so we decided to take advantage of it. We went outside to play....well, Alison played, mommy worked. Now that all the snow has melted the depressing sight of all the leaves that fell after we raked (and raked and raked and raked) the yard last fall has been staring me in the face, so I decided to do something about it.
Last summer and fall, Alison was quite the prissy princess. She would not touch grass. Not for anything. It really worked out to our advantage in a lot of ways, though. When it came time to rake up all the leaves, I could spread out a blanket in the yard, put a few toys on it and even though she was mobile by that time, she wouldn't get off the blanket. To do so would mean she would have to touch the grass, and we couldn't have that. (She didn't much like sitting in a pile of leaves either.) Of course, there were disadvantages as well. If we didn't have a blanket to sit her on, we couldn't put her down in the grass.
So this morning we went outside and I let her loose in the front yard. She took off and had a ball, until she fell. She had to touch the grass. She picked her hands up as soon as she got her knees under her. Not to worry, though. She was back on her feet in no time, without touching the grass since she just stands up rather than pushing herself up. She toddled around holding her hands up by her shoulders (as far away from the grass as she could get them, I guess) until she fell again. This scene repeated several more times. Then she noticed the leaves. She picked one up for a second and then put it down (yucky!). Then she noticed the sticks. Apparently those are ok. She picked one up and walked around with it for a good five minutes. Falling down on the grass was still icky, but it wasn't quite so bad with a stick in her hand. She much preferred being on the driveway, though.
It wasn't too much longer before she discovered there was a flowerbed on the other side of the sidewalk. Touching the grass is icky, but digging around in the mulch isn't. Go figure! At least I caught the mulch before it went into her mouth.
At any rate, I really hope this is the beginning of the end of the prissy princess routine. If not, we're in for a long spring/summer/fall of skinned knees and hands (and maybe even chins, cheeks and foreheads) because she'll be spending her time running up and falling down on the driveway (or the patio, when we're out back).
Last summer and fall, Alison was quite the prissy princess. She would not touch grass. Not for anything. It really worked out to our advantage in a lot of ways, though. When it came time to rake up all the leaves, I could spread out a blanket in the yard, put a few toys on it and even though she was mobile by that time, she wouldn't get off the blanket. To do so would mean she would have to touch the grass, and we couldn't have that. (She didn't much like sitting in a pile of leaves either.) Of course, there were disadvantages as well. If we didn't have a blanket to sit her on, we couldn't put her down in the grass.
So this morning we went outside and I let her loose in the front yard. She took off and had a ball, until she fell. She had to touch the grass. She picked her hands up as soon as she got her knees under her. Not to worry, though. She was back on her feet in no time, without touching the grass since she just stands up rather than pushing herself up. She toddled around holding her hands up by her shoulders (as far away from the grass as she could get them, I guess) until she fell again. This scene repeated several more times. Then she noticed the leaves. She picked one up for a second and then put it down (yucky!). Then she noticed the sticks. Apparently those are ok. She picked one up and walked around with it for a good five minutes. Falling down on the grass was still icky, but it wasn't quite so bad with a stick in her hand. She much preferred being on the driveway, though.
It wasn't too much longer before she discovered there was a flowerbed on the other side of the sidewalk. Touching the grass is icky, but digging around in the mulch isn't. Go figure! At least I caught the mulch before it went into her mouth.
At any rate, I really hope this is the beginning of the end of the prissy princess routine. If not, we're in for a long spring/summer/fall of skinned knees and hands (and maybe even chins, cheeks and foreheads) because she'll be spending her time running up and falling down on the driveway (or the patio, when we're out back).
Monday, March 22, 2004
Monday, Monday
Here it is, Monday afternoon, and I haven't accomplished very much. I've still got a cold, and the pressure in my sinuses is making my head feel like it's going to explode. Because of this cold, last week was not a good week for me weight-loss wise. I lost 3 pounds, but knew all along that it was all water weight. Once I started feeling a little better and actually felt like drinking stuff, I gained the three pounds back. I wasn't really all that surprised, either, because I didn't exercise at all last week, since we were all so miserable.
So, I'm back where I was last Monday. The only difference is that this week, I'm determined to exercise, because I am feeling a little bit better. I didn't get off to a very good start this morning, though, meaning I didn't do Tae Bo like I had planed to. I am definitely taking Alison for a walk this afternoon, though.
The weather around here is just plain screwy. Saturday we had temps in the 50's. Yesterday we barely cleared 30. Today is a deceptively beautiful, sunny day. Just looking out the front window you would think that it would be warm enough to go out without a coat on. A look out the back door tells a different story. That's where you will find the thermometer that reads 30 degrees. :( Tomorrow it's supposed to be warmer.
So, I'm back where I was last Monday. The only difference is that this week, I'm determined to exercise, because I am feeling a little bit better. I didn't get off to a very good start this morning, though, meaning I didn't do Tae Bo like I had planed to. I am definitely taking Alison for a walk this afternoon, though.
The weather around here is just plain screwy. Saturday we had temps in the 50's. Yesterday we barely cleared 30. Today is a deceptively beautiful, sunny day. Just looking out the front window you would think that it would be warm enough to go out without a coat on. A look out the back door tells a different story. That's where you will find the thermometer that reads 30 degrees. :( Tomorrow it's supposed to be warmer.
Thursday, March 18, 2004
One Year Ago Today
One year ago today I was preparing to spend the night sleeping in an uncomfortable recliner, praying that Alison would be able to settle down and get some sleep without being held. She had just had surgery to place a VP-shunt that morning.
It had been an exhausting day. The surgery was scheduled for 7:00, the first surgery of the day, and we had to have Alison at the hospital (which was half an hour away from our house) at an insanely early time.....4:30, if I recall correctly. I guess they thought it was going to take 2 1/2 hours to put her in a gown and weigh her. She was taken back for surgery at 7:15 and was in recovery at 8:15. We were able to see her at 8:30. If only we had known we would still be there, in recovery, at 8:30 that night. Not only was the hospital not exactly equipped to handle a 7 month old baby (it took them a good hour to locate a crib.....the next morning they delivered her a breakfast of cream of wheat, a muffin, orange juice and coffee....she had barely started eating solids by that point), they didn't have enough beds in Neurosurgical ICU to accomodate the patients that needed them, especially not one that needed a private room. So we spent the day in recovery.
It really wasn't awful. It just wasn't real comfortable. They eventually moved us down in the one spot that had a TV. (I would find out later that the cable in recovery was better than the cable in the actual room.) The nurses were very nice. They all felt really badly that we were stuck there. Alison had a 2 inch incision behind her right ear and another one, which was about an inch long, in her stomach (the shunt a valve that sits under the skin behind her ear, from there a length of tubing goes through the skull and into the ventricle and another lenght of tubing goes from the valve down her neck, over her collarbone, down her chest and into her stomach cavity). She also had her IV on the left side of her head. I guess it goes without saying that she was in a bit of pain and quite uncomfortable. When we got her into a comfortable position, we tried to keep her that way as long as possible. Unfortunately, she was not comfortable lying in her crib. So she was held for most of the day. We took turns going to eat so that one of us was with her at all time. It made things easier for the nurses, though they would have loved nothing more than to take care of her for us.
I suppose it also goes without saying that there was quite a bit of crying going on that day. When you're 7 months old and have just had your head and your stomach cut open and a whole drilled in your skull, it's a pretty reasonable response. We were trying to control her pain with Tylenol and Motrin because her doctor wanted to avoid morphine if at all possible (and it ended up being possible). Most of the other patients and their families were pretty understanding. We did get a few dirty looks from a couple people. I don't know what they expected us to do. At one point, after we had been waiting for about 10 hours, another patient, who had been wating about 2 hours and whose family has been the ones giving us dirty looks when Alison cried, complained about his wait and asked how much longer it was going to be before he got moved. The nurse told him she didn't know "but that little baby over there has been waiting for a room since before I came to work this morning." After that he never said a word about waiting for a room.
We finally got moved to our room. Kevin and my parents went home and Alison and I settled in for the night. As luck would have it, she never did really settle down to sleep in the crib. I ended up laying her on my chest and we both slept in the uncomortable recliner. (I had seriously considered climbing into the crib with her, but wasn't entirely certain it would hold both of us.) You can imagine how thrilled I was when the doctor told us she could come home the next afternoon. I was not relishing the idea of spending another night in that chair.
So here we are a year later. Alison is doing great. While we are always on the lookout for shunt failure, it's no longer the first thing that comes to mind if she starts getting crabby, or is more tired than usual for a day or two. So far, she seems to have fallen into the 1/3 of shunt patients who get their shunt and never have a problem with it. We hope it stays that way.
It had been an exhausting day. The surgery was scheduled for 7:00, the first surgery of the day, and we had to have Alison at the hospital (which was half an hour away from our house) at an insanely early time.....4:30, if I recall correctly. I guess they thought it was going to take 2 1/2 hours to put her in a gown and weigh her. She was taken back for surgery at 7:15 and was in recovery at 8:15. We were able to see her at 8:30. If only we had known we would still be there, in recovery, at 8:30 that night. Not only was the hospital not exactly equipped to handle a 7 month old baby (it took them a good hour to locate a crib.....the next morning they delivered her a breakfast of cream of wheat, a muffin, orange juice and coffee....she had barely started eating solids by that point), they didn't have enough beds in Neurosurgical ICU to accomodate the patients that needed them, especially not one that needed a private room. So we spent the day in recovery.
It really wasn't awful. It just wasn't real comfortable. They eventually moved us down in the one spot that had a TV. (I would find out later that the cable in recovery was better than the cable in the actual room.) The nurses were very nice. They all felt really badly that we were stuck there. Alison had a 2 inch incision behind her right ear and another one, which was about an inch long, in her stomach (the shunt a valve that sits under the skin behind her ear, from there a length of tubing goes through the skull and into the ventricle and another lenght of tubing goes from the valve down her neck, over her collarbone, down her chest and into her stomach cavity). She also had her IV on the left side of her head. I guess it goes without saying that she was in a bit of pain and quite uncomfortable. When we got her into a comfortable position, we tried to keep her that way as long as possible. Unfortunately, she was not comfortable lying in her crib. So she was held for most of the day. We took turns going to eat so that one of us was with her at all time. It made things easier for the nurses, though they would have loved nothing more than to take care of her for us.
I suppose it also goes without saying that there was quite a bit of crying going on that day. When you're 7 months old and have just had your head and your stomach cut open and a whole drilled in your skull, it's a pretty reasonable response. We were trying to control her pain with Tylenol and Motrin because her doctor wanted to avoid morphine if at all possible (and it ended up being possible). Most of the other patients and their families were pretty understanding. We did get a few dirty looks from a couple people. I don't know what they expected us to do. At one point, after we had been waiting for about 10 hours, another patient, who had been wating about 2 hours and whose family has been the ones giving us dirty looks when Alison cried, complained about his wait and asked how much longer it was going to be before he got moved. The nurse told him she didn't know "but that little baby over there has been waiting for a room since before I came to work this morning." After that he never said a word about waiting for a room.
We finally got moved to our room. Kevin and my parents went home and Alison and I settled in for the night. As luck would have it, she never did really settle down to sleep in the crib. I ended up laying her on my chest and we both slept in the uncomortable recliner. (I had seriously considered climbing into the crib with her, but wasn't entirely certain it would hold both of us.) You can imagine how thrilled I was when the doctor told us she could come home the next afternoon. I was not relishing the idea of spending another night in that chair.
So here we are a year later. Alison is doing great. While we are always on the lookout for shunt failure, it's no longer the first thing that comes to mind if she starts getting crabby, or is more tired than usual for a day or two. So far, she seems to have fallen into the 1/3 of shunt patients who get their shunt and never have a problem with it. We hope it stays that way.
Wednesday, March 17, 2004
The Itsy Bitsy Spider
Alison gets breathing treatments twice a day, and has to sit still, with a mask on, for 5 minutes or so. Unless she's strapped down, like in a car seat or highchair, she never willingly sits still for 5 minutes. So when it's my turn to do the treatment (most mornings, since I'm the only one home) we sing songs and identify body parts to keep her distracted. Her current favorite song is "The Itsy Bitsy Spider." We know when she wants to sing "The Itsy Bitsy Spider" because she puts her index fingers together like a point on a triangle, tying to imitate how I make the spider climb up the water spout. When I do sing the song, she puts her finger together and lifts her arms up, as the spider climbs up the spout. Then she does something resembling the rain and washing the spider out. She puts her arms up over her head trying to be the sun drying up the rain and then she puts her fingers together to be the spider going back up the spout.
One of these days, soon I hope, I want to get a video of her doing this. We have a friend who was thouroughly embarassed in front of a large crowd of people at Howl at the Moon Saloon one night because he didn't know how to do "The Itsy Bitsy Spider." I want to show him that Alison is one up on him because she knows the moves to "The Itsy Bitsy Spider" at only 19 months old and he didn't learn them until he was 23. I know he'd get a kick out of it, and if he doesn't, his wife will.
Next up, we have to have daddy teach her "I'm a Little Teapot," since he performed it so well the same night our friend was being embarassed (which is not to say that Kevin wasn't embarassed, too, but at least he knew what he was doing).
One of these days, soon I hope, I want to get a video of her doing this. We have a friend who was thouroughly embarassed in front of a large crowd of people at Howl at the Moon Saloon one night because he didn't know how to do "The Itsy Bitsy Spider." I want to show him that Alison is one up on him because she knows the moves to "The Itsy Bitsy Spider" at only 19 months old and he didn't learn them until he was 23. I know he'd get a kick out of it, and if he doesn't, his wife will.
Next up, we have to have daddy teach her "I'm a Little Teapot," since he performed it so well the same night our friend was being embarassed (which is not to say that Kevin wasn't embarassed, too, but at least he knew what he was doing).
Monday, March 15, 2004
Alison's Big Day
Poor Alison. She was so exhausted tonight that she went to bed an hour early. (I just hope that doesn't mean she's going to wake up an hour early tomorrow.) She had a big day, though. This morning she had an appointment at Spina Bifida clinic at U of M and then she went over to the Department of Kinesiology's Motor Development Lab to do her last data collection as part of their study on how walking develops in babies with Spina Bifida. Even though we were done by lunch time, it still made for a very long day.
Alison's clinic appointment went really well. Her doctor was very happy with her progress. We still have a few things to keep and eye on; she in-toes a lot when not wearing shoes, so she has to wear her shoes more often at home and, when manipulating her legs, the outer rotation in her hips is a little bit too loose, but these are things her doctor is comfortable with us keeping an eye on instead of treating right now. The hip problem, in particular, would interfere with her mobility because it would require braces, and he doesn't want to do that to her at this point, especially since it hasn't been affecting the way she stands or walks.
Her pediatrician has jumped the gun once again with regard to her back and the fact that she doesn't stand without holding onto/leaning against something. Dr. Barr stood her up and felt along her spine, watched her walk and said her back is fine. It seems to him the problem is more with her feet. He also feels the most likely cause for her not standing is the mild Chiari malformation that she has. One of the "side effects" of having the open lesion that babies with spina bifida have is that the cerebellum, or hindbrain, slides down into the top of the spinal column and becomes deformed and compressed. One of the (originally unintentional) benefits to fetal surgery is that once the lesion is closed the brains of these babies tend to move back up into a more normal position. That was the case with Alison, so she only has a very mild case of Chiari. Anyway, she will eventually stand on her own, but it will just take a little longer than normal. Dr. Barr has had patients that have been as old as 4 before they were able to stand without holding on. I hope Alison doesn't take that long. So that's two less things we have to worry about.
I know that treating a patient with Spina Bifida is not something that Alison's pediatrician does every day (she could possibly be one of the only SB patients he's ever had, and she is definitely the only SB fetal surgery patient he's ever had), and he's just trying to do the best he can for her, but it makes it hard for us when he overreacts to things like this. I'm glad we have had Dr. Barr to fall back on. Unfortunately he is retiring at the end of June. But, he has great confidence in the doctor that is taking over the clinic, and the Dean of Kinesiology had good things to say about him too, so that's reassuring.
From the doctor's appointment we headed over to the Motor Development Lab to go walking! Alison always has a lot of fun when she goes there. This time was a kind of follow-up to see how she's doing after walking for 3 months so all she had to do was walk down the special mat over and over and she didn't have to walk on the treadmill at all. I was worried that she wasn't going to walk the whole way down the mat, because she didn't want to cooperate to well when Dr. Barr was watching her walk (she'd walk towards us for a few steps and then spin around and take off the other way or she would head right into the nearest open door). After she got all her markers and electrodes on, they sent her down on a trial run and she took about 5 steps on the mat an veered off the side and stayed there until she was about 4 feet from the end of it which was where she proceeded crossed back over and walk on the other side of it. Using some cardboard blocks, Ugo created some "road blocks" in a couple places along the side of the mat and she did great the rest of the time.
All during the time Alison has been participating in this study they have been making a memory book for her. It has height and weight charts, pictures of Alison and little synopses of how Alison did each time she was there. Today they finished the book and added a little "diploma," signed on the back by everyone involved with the study, in honor of her completing the study.
Alison had to get up early this morning, and we hoped she might snooze a little in the car on the way to Ann Arbor. Well, that didn't happen. We were sure, however, that she would sleep on the way home, because that would be during her regular nap time. Well, that didn't really happen either. She did sleep, but only for about 15 minutes. Kevin settled her down for a nap once we got home, and assured me that she was "out" before he left to get his hair cut. That was at 2:45. At 3:00 she was awake. By 3:30 she was wailing, so I went to get her. We rocked for a little bit and then went to lay down in our bed. She laid there for about 15 minutes and then decided it was time to play. By dinner time she was practically falling asleep in her highchair, but she wouldn't give up. I left her with Kevin and went and got my hair cut and she was in rare form by the time I got home. We tried laying down again, but she would not give up. Shortly thereafter I had enough of the whining, so we started getting her ready for bed. She almost fell asleep in the bathtub! It didn't take long after that for her to finally give up. Here's hoping we all get a good night's sleep.
Alison's clinic appointment went really well. Her doctor was very happy with her progress. We still have a few things to keep and eye on; she in-toes a lot when not wearing shoes, so she has to wear her shoes more often at home and, when manipulating her legs, the outer rotation in her hips is a little bit too loose, but these are things her doctor is comfortable with us keeping an eye on instead of treating right now. The hip problem, in particular, would interfere with her mobility because it would require braces, and he doesn't want to do that to her at this point, especially since it hasn't been affecting the way she stands or walks.
Her pediatrician has jumped the gun once again with regard to her back and the fact that she doesn't stand without holding onto/leaning against something. Dr. Barr stood her up and felt along her spine, watched her walk and said her back is fine. It seems to him the problem is more with her feet. He also feels the most likely cause for her not standing is the mild Chiari malformation that she has. One of the "side effects" of having the open lesion that babies with spina bifida have is that the cerebellum, or hindbrain, slides down into the top of the spinal column and becomes deformed and compressed. One of the (originally unintentional) benefits to fetal surgery is that once the lesion is closed the brains of these babies tend to move back up into a more normal position. That was the case with Alison, so she only has a very mild case of Chiari. Anyway, she will eventually stand on her own, but it will just take a little longer than normal. Dr. Barr has had patients that have been as old as 4 before they were able to stand without holding on. I hope Alison doesn't take that long. So that's two less things we have to worry about.
I know that treating a patient with Spina Bifida is not something that Alison's pediatrician does every day (she could possibly be one of the only SB patients he's ever had, and she is definitely the only SB fetal surgery patient he's ever had), and he's just trying to do the best he can for her, but it makes it hard for us when he overreacts to things like this. I'm glad we have had Dr. Barr to fall back on. Unfortunately he is retiring at the end of June. But, he has great confidence in the doctor that is taking over the clinic, and the Dean of Kinesiology had good things to say about him too, so that's reassuring.
From the doctor's appointment we headed over to the Motor Development Lab to go walking! Alison always has a lot of fun when she goes there. This time was a kind of follow-up to see how she's doing after walking for 3 months so all she had to do was walk down the special mat over and over and she didn't have to walk on the treadmill at all. I was worried that she wasn't going to walk the whole way down the mat, because she didn't want to cooperate to well when Dr. Barr was watching her walk (she'd walk towards us for a few steps and then spin around and take off the other way or she would head right into the nearest open door). After she got all her markers and electrodes on, they sent her down on a trial run and she took about 5 steps on the mat an veered off the side and stayed there until she was about 4 feet from the end of it which was where she proceeded crossed back over and walk on the other side of it. Using some cardboard blocks, Ugo created some "road blocks" in a couple places along the side of the mat and she did great the rest of the time.
All during the time Alison has been participating in this study they have been making a memory book for her. It has height and weight charts, pictures of Alison and little synopses of how Alison did each time she was there. Today they finished the book and added a little "diploma," signed on the back by everyone involved with the study, in honor of her completing the study.
Alison had to get up early this morning, and we hoped she might snooze a little in the car on the way to Ann Arbor. Well, that didn't happen. We were sure, however, that she would sleep on the way home, because that would be during her regular nap time. Well, that didn't really happen either. She did sleep, but only for about 15 minutes. Kevin settled her down for a nap once we got home, and assured me that she was "out" before he left to get his hair cut. That was at 2:45. At 3:00 she was awake. By 3:30 she was wailing, so I went to get her. We rocked for a little bit and then went to lay down in our bed. She laid there for about 15 minutes and then decided it was time to play. By dinner time she was practically falling asleep in her highchair, but she wouldn't give up. I left her with Kevin and went and got my hair cut and she was in rare form by the time I got home. We tried laying down again, but she would not give up. Shortly thereafter I had enough of the whining, so we started getting her ready for bed. She almost fell asleep in the bathtub! It didn't take long after that for her to finally give up. Here's hoping we all get a good night's sleep.
Sunday, March 14, 2004
Sunday Even Ramblings
Lots of things have been going on this past week. First of all, I lost 2 pounds. Now I only have 14 pounds to go until I hit my first goal. If I keep up at a 2 pounds per week loss, I'll do it a week ahead of schedule.
Alison had an evaluation with Early On last Monday. For the most part, she did really well. She's still way ahead on her verbal and personal-social skills. She's still behind on gross motor. She doesn't walk backward (heck, she's just mastering walking forward), she doesn't kick a ball, she doesn't walk up stairs, she didn't start climbing into an adult sized chair until Wednesday, and she will not stand without holding on to or leaning against something. Well, I take that back, I started trying to really work with her again and can get her to stand for 10 or 15 seconds here and there. She's also behind on fine motor now, primarily because she wouldn't stack more than 2 blocks. The aggrivating thing about it was that she stacked the first one with no problem and then totally lost interest, almost as if to say "hey, I did it once, what more do you need?" Well, we needed her to do it at least once more, preferably twice. I'm not terribly worried about her fine motor skills, though, because this is the same girl who has no trouble poking her fingers into her ziti and eating them off her fingertips when we go to Fazoli's. At any rate, we're fully prepared to get a referral for physical or occupational therapy at Alison's Spina Bifida clinic appointment tomorrow, not because of the evaluation on Monday, but because her spine is crooked (and because she doesn't stand alone). One thing I've noticed since we've been able to get her to stand alone a little, she seems to stand straighter when she walks. A true improvement or wishful thinking? I guess we'll find out tomorrow.
My sister-in-law has apparently broken off her engagement and moved back to her parents' home again, for the second time since January. Apparently this time it's for good. Although she never said anything when Kevin talked to her last night (more on that in a minute), we've heard through the family grapevine that she's pregnant again. She already has a 3 1/2 year old from a previous relationship. So now she's going to be a 24 year old unemployed, uninsured mother of 2 living with her parents. I wish I could get her into a one-on-one chat with Dr. Phil so he could ask "what were you thinking?"
Last night we went out to dinner and to do a little shopping and came home to a message from Kevin's sister saying that their dad is in the hospital (and has been since Thursday). He was apparently admitted because his pneumonia didn't seem to be getting any better. The did a CT-scan and found a spot on one of his lungs. He is to have a biopsy tomorrow, but even without it the doctor is 95% certain it's cancer. He's also optomistic about his chances. They've caught it early and should be able to manage it surgically and with chemo. I hope that it will be enough to get the rest of the family to quit smoking. Kevin's sister has said that she has already quit and that her mom has cut way back in an attempt to quit altogether. Kevin is, obviously, concerned and we are prepared to go to Virginia at almost a moment's notice if we need to.
Alison had an evaluation with Early On last Monday. For the most part, she did really well. She's still way ahead on her verbal and personal-social skills. She's still behind on gross motor. She doesn't walk backward (heck, she's just mastering walking forward), she doesn't kick a ball, she doesn't walk up stairs, she didn't start climbing into an adult sized chair until Wednesday, and she will not stand without holding on to or leaning against something. Well, I take that back, I started trying to really work with her again and can get her to stand for 10 or 15 seconds here and there. She's also behind on fine motor now, primarily because she wouldn't stack more than 2 blocks. The aggrivating thing about it was that she stacked the first one with no problem and then totally lost interest, almost as if to say "hey, I did it once, what more do you need?" Well, we needed her to do it at least once more, preferably twice. I'm not terribly worried about her fine motor skills, though, because this is the same girl who has no trouble poking her fingers into her ziti and eating them off her fingertips when we go to Fazoli's. At any rate, we're fully prepared to get a referral for physical or occupational therapy at Alison's Spina Bifida clinic appointment tomorrow, not because of the evaluation on Monday, but because her spine is crooked (and because she doesn't stand alone). One thing I've noticed since we've been able to get her to stand alone a little, she seems to stand straighter when she walks. A true improvement or wishful thinking? I guess we'll find out tomorrow.
My sister-in-law has apparently broken off her engagement and moved back to her parents' home again, for the second time since January. Apparently this time it's for good. Although she never said anything when Kevin talked to her last night (more on that in a minute), we've heard through the family grapevine that she's pregnant again. She already has a 3 1/2 year old from a previous relationship. So now she's going to be a 24 year old unemployed, uninsured mother of 2 living with her parents. I wish I could get her into a one-on-one chat with Dr. Phil so he could ask "what were you thinking?"
Last night we went out to dinner and to do a little shopping and came home to a message from Kevin's sister saying that their dad is in the hospital (and has been since Thursday). He was apparently admitted because his pneumonia didn't seem to be getting any better. The did a CT-scan and found a spot on one of his lungs. He is to have a biopsy tomorrow, but even without it the doctor is 95% certain it's cancer. He's also optomistic about his chances. They've caught it early and should be able to manage it surgically and with chemo. I hope that it will be enough to get the rest of the family to quit smoking. Kevin's sister has said that she has already quit and that her mom has cut way back in an attempt to quit altogether. Kevin is, obviously, concerned and we are prepared to go to Virginia at almost a moment's notice if we need to.
Wednesday, March 10, 2004
Take a Giant Step
That's the name of a song by a group I like to listen to, and it's been running through my head lately. We just took a giant step. Our giant step has nothing to do with the one in the song, though. Our giant step was hopping back on the ttc train.
There are a several of reasons why this is such a big deal to us. The first ones are probably pretty common: can we handle another baby? Well, we'll never know unless we try. Can we afford another baby? If we waited until we were sure we could afford children, we never would have had the one we've already got.
The rest of our reasons are more specific to our situation. Since we have one child with a neural tube defect, we are at an increased risk of having another child with a neural tube defect. To try and lower this risk, I've been taking 4 times the recommended daily amount of folic acid for the last 3 1/2 months. What if it happens again? Also in the back of our minds is the knowledge that at least one fetal surgery patient had complications with her next pregnancy. Her incision "unzipped" and the baby was outside the uterus and deprived of oxygen for a time. She ended up being fine, because they caught it quickly, but what if that happened to me? What other complications could arise because of the fetal surgery? We have decided we'll just take what comes.
Despite all this we're much more relaxed about the whole thing this time around. It's almost impossible for me to chart temperatures, since I don't always have at least 3 hours of uniterrupted sleep before I get up in the mornings. So I'm not obsessing about temperatures. My cycles are pretty regular and I have a general idea of when I ovulate, so we're just winging it this time.
We always said we wanted to have two kids. I wanted them to be about 3 or 3 1/2 years apart (I also wanted to be done having kids by the time I was 30, but that didn't happen). One might ask why we are trying now, when Alison just about 19 months old. Well, it took us 4 years, two intrauterine inseminations, 3 full in vitro cycles and a frozen embryo transfer to get pregnant with Alison. We have such explained infertility that it's not even funny. At my last OB appointment before Alison was born, the med student doing her High Risk rotation asked me about birth control. I almost laughed in her face and told her the best birth control we ever used was actively trying to get pregnant. The chances of me getting pregnant the old fashioned way is slim to none. But, since there is always that freak chance that things will work the way nature intended them (I did get pregnant that way once and unfortunately miscarried), we've decided to give ourselves 6 months before we head back to the specialist. That will bring us just past Alison's 2nd birthday. From then it will take time to get an appointment and get on cycle for the procedure. A successful first try would put us in the range of Alison's 3rd birthday. We can afford one full IVF procedure and one frozen embryo transfer (if the IVF doesn't work and we have embryos left). So that means that by this time next year I will either be pregnant or done ttc. And while I hope that I am pregnant, I can accept the other outcome.
There are a several of reasons why this is such a big deal to us. The first ones are probably pretty common: can we handle another baby? Well, we'll never know unless we try. Can we afford another baby? If we waited until we were sure we could afford children, we never would have had the one we've already got.
The rest of our reasons are more specific to our situation. Since we have one child with a neural tube defect, we are at an increased risk of having another child with a neural tube defect. To try and lower this risk, I've been taking 4 times the recommended daily amount of folic acid for the last 3 1/2 months. What if it happens again? Also in the back of our minds is the knowledge that at least one fetal surgery patient had complications with her next pregnancy. Her incision "unzipped" and the baby was outside the uterus and deprived of oxygen for a time. She ended up being fine, because they caught it quickly, but what if that happened to me? What other complications could arise because of the fetal surgery? We have decided we'll just take what comes.
Despite all this we're much more relaxed about the whole thing this time around. It's almost impossible for me to chart temperatures, since I don't always have at least 3 hours of uniterrupted sleep before I get up in the mornings. So I'm not obsessing about temperatures. My cycles are pretty regular and I have a general idea of when I ovulate, so we're just winging it this time.
We always said we wanted to have two kids. I wanted them to be about 3 or 3 1/2 years apart (I also wanted to be done having kids by the time I was 30, but that didn't happen). One might ask why we are trying now, when Alison just about 19 months old. Well, it took us 4 years, two intrauterine inseminations, 3 full in vitro cycles and a frozen embryo transfer to get pregnant with Alison. We have such explained infertility that it's not even funny. At my last OB appointment before Alison was born, the med student doing her High Risk rotation asked me about birth control. I almost laughed in her face and told her the best birth control we ever used was actively trying to get pregnant. The chances of me getting pregnant the old fashioned way is slim to none. But, since there is always that freak chance that things will work the way nature intended them (I did get pregnant that way once and unfortunately miscarried), we've decided to give ourselves 6 months before we head back to the specialist. That will bring us just past Alison's 2nd birthday. From then it will take time to get an appointment and get on cycle for the procedure. A successful first try would put us in the range of Alison's 3rd birthday. We can afford one full IVF procedure and one frozen embryo transfer (if the IVF doesn't work and we have embryos left). So that means that by this time next year I will either be pregnant or done ttc. And while I hope that I am pregnant, I can accept the other outcome.
Monday, March 8, 2004
Weekly Weigh In (week 6)
I lost one pound last week, bringing my total to 14 pounds. I had been hoping to lose two pounds and bring my total to 15 pounds, but given the binge filled week I had, I'm glad to have lost any weight at all.
I'm not sure exactly what my problem was last week, but it all started with Pizza Hut. From there, I moved on to cookie dough. I mixed up some oatmeal cookie dough Tuesday night, intending to make cookies for Alison on Wednesday. I did make the cookies, but not before eating at least 6 cookies worth of dough. A couple of days later, I moved on to the baked cookies, because Alison won't eat them, so somebody has to, right? Then from there, I moved on to Marie Calendar's chocolate mousse pie (my mom was visiting this weekend, so Kevin thought we should have pie).
I'm still not completely back on the wagon (there are still cookies out there in the kitchen calling me), but I'm doing better today.
I'm not sure exactly what my problem was last week, but it all started with Pizza Hut. From there, I moved on to cookie dough. I mixed up some oatmeal cookie dough Tuesday night, intending to make cookies for Alison on Wednesday. I did make the cookies, but not before eating at least 6 cookies worth of dough. A couple of days later, I moved on to the baked cookies, because Alison won't eat them, so somebody has to, right? Then from there, I moved on to Marie Calendar's chocolate mousse pie (my mom was visiting this weekend, so Kevin thought we should have pie).
I'm still not completely back on the wagon (there are still cookies out there in the kitchen calling me), but I'm doing better today.
Monday, March 1, 2004
I forgot to mention...
I lost 3 pounds last week. That brought me to 13 pounds lost in 5 weeks. Not too bad. I've also lost 3 inches of both my hips and waist. Of course, I blew it Saturday night. We went out to Pizza Hut, and instead of getting one of their new pizzas for people on diets, we went ahead and got a regular pan supreme pizza. Even though I only ate the little tiny slivers, there were four of them. And they were so good! Oh well, back to healthy eating, and next time we'll try one of the new pizzas. On a positive note, though, I walked into the living room tonight and Kevin told me my clothes are really getting baggy. So there is shopping for smaller clothes in my future. :)
Sub Sale
At our church, our middle school youth group has an annual fundraiser. The sell sub sandwiches. It's not the only fundraiser they do, but it's the one that comes around every year at the same time (except this year.....it was a month later than usual). This is our first year as middle school counselors, so we've never participated in the sub sale before. And since I was not able to go on the ski trip, since someone had to stay home with Alison, sub sale was all mine.
The kids took orders and turned them in last Sunday. Yesterday we were all to meet in the church kitchen at 7:00 AM to make the subs to fill the orders. I dragged myself out of bed at 6:00 and made it there by 7:05. An assembly line system was set up and the kids had just started cranking out subs. I don't remember the final total (if I ever even heard it) but they made at least 150 subs in several different varieties: turkey/ham/cheese and lettuce, turkey/ham/cheese and no lettuce, ham and cheese with lettuce, ham and cheese without lettuce, turkey and cheese with lettuce and turkey and cheese without lettuce. There may be one more that I'm forgetting, but that's the general idea.
I didn't get to be in the kitchen for very long because one of the other counselors and I got sent out to the fellowship hall to do quality control and labeling. It didn't take long for us to get waaayy behind, because there was a lot of quality that needed to be controled. The subs were wrapped in plastic wrap and most of them needed to be re-wrapped because at least one end of the sub was hanging out. Once we got a system going, and a couple of kids to help us out, we caught up pretty quickly (also aided by the fact that sub production stopped for a period of time while someone went out to buy more cheese.....they ran out). Then the hard work began. We had to figure out how to organize the subs for pick-up and there's nothing like leaving that up to two people who have never done it before.
Most of the orders were being picked up (and then delivered) by the kids, so that made it a little easier. We just handed out the order forms to the kids and let them fill up bags or boxes (depending on the size of the order). Things got a little more complicated when it came to orders with customer pick-ups and people who hadn't paid for their subs yet, but we, again, had the kids bag up the orders. Then came the tedious task of going over all the bags and boxes and making sure that the orders were correct and properly labeled for easy pick-up. We had to make a few substitutions...some people who wanted lettuce on their sandwiches got them without lettuce, and a couple who ordered turkey/cheese/lettuce ended up with the works and some who wanted ham/turkey/cheese ended up with just hame and cheese because they ran out of turkey before they could finish all the turkey subs.
It's hard to believe that everything was accomplished in just over 2 hours. It felt like a lot longer. At one point I told one of the other adults that I would much rather go back to senior high and do roll bakes (their 4-times-a-year fundraiser) than do another sub sale. But, at 9:20, only 5 minutes after the service started, I was making my way into the sanctuary. Thank goodness we won't have to do that again for another year. But the kids had a good time, and that's probably the most important thing.
I would also like to add that, despite the fact that I did not lay out an outfit for Alison, Kevin mananged to get her fed, suitably dressed for church (right down to the right color tights to go with the jumper he picked out) and dropped off in the nursery in time to come down and help us out for a few minutes.
The kids took orders and turned them in last Sunday. Yesterday we were all to meet in the church kitchen at 7:00 AM to make the subs to fill the orders. I dragged myself out of bed at 6:00 and made it there by 7:05. An assembly line system was set up and the kids had just started cranking out subs. I don't remember the final total (if I ever even heard it) but they made at least 150 subs in several different varieties: turkey/ham/cheese and lettuce, turkey/ham/cheese and no lettuce, ham and cheese with lettuce, ham and cheese without lettuce, turkey and cheese with lettuce and turkey and cheese without lettuce. There may be one more that I'm forgetting, but that's the general idea.
I didn't get to be in the kitchen for very long because one of the other counselors and I got sent out to the fellowship hall to do quality control and labeling. It didn't take long for us to get waaayy behind, because there was a lot of quality that needed to be controled. The subs were wrapped in plastic wrap and most of them needed to be re-wrapped because at least one end of the sub was hanging out. Once we got a system going, and a couple of kids to help us out, we caught up pretty quickly (also aided by the fact that sub production stopped for a period of time while someone went out to buy more cheese.....they ran out). Then the hard work began. We had to figure out how to organize the subs for pick-up and there's nothing like leaving that up to two people who have never done it before.
Most of the orders were being picked up (and then delivered) by the kids, so that made it a little easier. We just handed out the order forms to the kids and let them fill up bags or boxes (depending on the size of the order). Things got a little more complicated when it came to orders with customer pick-ups and people who hadn't paid for their subs yet, but we, again, had the kids bag up the orders. Then came the tedious task of going over all the bags and boxes and making sure that the orders were correct and properly labeled for easy pick-up. We had to make a few substitutions...some people who wanted lettuce on their sandwiches got them without lettuce, and a couple who ordered turkey/cheese/lettuce ended up with the works and some who wanted ham/turkey/cheese ended up with just hame and cheese because they ran out of turkey before they could finish all the turkey subs.
It's hard to believe that everything was accomplished in just over 2 hours. It felt like a lot longer. At one point I told one of the other adults that I would much rather go back to senior high and do roll bakes (their 4-times-a-year fundraiser) than do another sub sale. But, at 9:20, only 5 minutes after the service started, I was making my way into the sanctuary. Thank goodness we won't have to do that again for another year. But the kids had a good time, and that's probably the most important thing.
I would also like to add that, despite the fact that I did not lay out an outfit for Alison, Kevin mananged to get her fed, suitably dressed for church (right down to the right color tights to go with the jumper he picked out) and dropped off in the nursery in time to come down and help us out for a few minutes.
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