MIL started her chemo this past Thursday. So far, so good. She took the van from the American Cancer Society and decided it wasn't that bad. She thought it would be a rough ride, but was pleasantly surprised at how smooth of a ride she had in a Chrysler Town and Country. She is doing one drug, at a low dose. If she tolerates it well, she will consider taking a 2nd drug after the first 3 sessions. So far, she just feels tired.
Today is Obsidian's MRI. It took me until mid-afternoon on Friday to get everything correctly set up for it. The MRI isn't what bothers me. It is the sedation part I really don't like. I'm not too thrilled with the idea of something wrong being found either. But I would rather know so I can possibly do something. I just really don't like the idea of sedation. But it must be done. And soon it will be.
Sunday, January 23, 2011
Pearls
What I love about the idea of pearls are that they are a completely unexpected treasure when you find them. Hidden inside a rather gly object f a clam, you find something so beautiful. Now you know there is the possiblity of finding one, but no gaurtentees. And you definately don't know if you are going to find a particularly beautiful one.
Shortly after Pyrope started walking, I started him in a gymnastics class at our local rec center. I really liked the instructor. She was great. She was great when Pyrope had some difficulty transitioning to the classes that are without parents. She was great when I asked her if I could sign up Obsidian for the baby class even though he couldn't walk, and that is the prerequisite for the class. He was in the class for 6 months before he could walk. I actually only signed him up for one legitimate session of that class because he started walking between week 1 and 2 of the one session, and there was only one full session before he aged out to the 2 year old class. Obsidian really really wanted to go up to the class without parents and that got to do a craft at the end. This is now the 2nd or 3rd session of the "big kids" (meaning parents don't stay) class. He missed the first week due to a doctor's appointment. The second week, a little girl looked at him and said "He can't be in our class, he is just a baby." The teacher matter-of-factly said "He is just as old as you are, he is just small. He is part of the class." The little girl then said "Here is an empty carpet, sit next to me." in a tone that sounded completely accepting of Obsidian. So many people don't look past Obsidian's size, or his gross motor delays. This teacher recognizes his gross motor delays (he can't do what the rest of the kids can do a lot of the time, she just changes the activity for him, helps him, or has another child help him) but also recognizes that socially and cognitively, this is where he belongs.
A pearl.
Shortly after Pyrope started walking, I started him in a gymnastics class at our local rec center. I really liked the instructor. She was great. She was great when Pyrope had some difficulty transitioning to the classes that are without parents. She was great when I asked her if I could sign up Obsidian for the baby class even though he couldn't walk, and that is the prerequisite for the class. He was in the class for 6 months before he could walk. I actually only signed him up for one legitimate session of that class because he started walking between week 1 and 2 of the one session, and there was only one full session before he aged out to the 2 year old class. Obsidian really really wanted to go up to the class without parents and that got to do a craft at the end. This is now the 2nd or 3rd session of the "big kids" (meaning parents don't stay) class. He missed the first week due to a doctor's appointment. The second week, a little girl looked at him and said "He can't be in our class, he is just a baby." The teacher matter-of-factly said "He is just as old as you are, he is just small. He is part of the class." The little girl then said "Here is an empty carpet, sit next to me." in a tone that sounded completely accepting of Obsidian. So many people don't look past Obsidian's size, or his gross motor delays. This teacher recognizes his gross motor delays (he can't do what the rest of the kids can do a lot of the time, she just changes the activity for him, helps him, or has another child help him) but also recognizes that socially and cognitively, this is where he belongs.
A pearl.
Friday, January 21, 2011
Irrational
So early this week, a spam got sent out from what looked like my email account to every person in my contact list. I did not send it. One very nice computer man who came to my house later, I think I'm okay.
One person in my contact list is my dad. I know there is no real reason to keep his old work email address in my contact list. I know he has been gone for over 5 years. But when I see it in there, I always thought I could email him if I wanted his view of something. My logical side knew this was not true, that the account has been long shut down. And even if it wasn't, he wouldn't be able to reply. But since I had never emailed him, I could try it at some point if I really wanted (yes, I know this makes NO sense). So when the bounced spam got sent to me, I was upset by the fact that it is no longer an option. My email will just get returned to me as unsendable. And this makes me sad. As completely irrational as it is.
I still haven't deleted him as a contact. I doubt I will.
One person in my contact list is my dad. I know there is no real reason to keep his old work email address in my contact list. I know he has been gone for over 5 years. But when I see it in there, I always thought I could email him if I wanted his view of something. My logical side knew this was not true, that the account has been long shut down. And even if it wasn't, he wouldn't be able to reply. But since I had never emailed him, I could try it at some point if I really wanted (yes, I know this makes NO sense). So when the bounced spam got sent to me, I was upset by the fact that it is no longer an option. My email will just get returned to me as unsendable. And this makes me sad. As completely irrational as it is.
I still haven't deleted him as a contact. I doubt I will.
Thursday, January 20, 2011
Thankful Thursday
- For a friendly guy who will come to my house to fix my computer problems and charge a reasonable amount so my computer gets fixed with minimal effort and stress on my part
- Peanut butter crackers... you know the orange one that are squares that come in packages of 4 or 6. Obsidian loves them, and it fixes just about anything for him
- Indoor playgrounds. I don't mind going out and playing in the snow. I don't mind playing even if it is raining. I don't "do" freezing rain/ice/sleet/slushing (or thunderstorm, but I don't have those this time of year). Irregardless of weather, my kids (particularly Pyrope) needs to run around daily.
- The people in my life that are willing and I trust to care for my kids at a moments notice. Even if it is inconvenient for them.
- That every morning is started with Obsidian getting within 2" of my face, and using his index finger pushes on my nose and says "Boop". Not sure why he does this but it is sure a more pleasant way to wake up than an alarm clock, or a screaming child, or a lot of other ways to wake up.
- The large selection of programs (movies, documentaries, TV series) I can watch through my Wii on Net.flix
- That I found my long handled ice scrapper. Pyrope did not put it back where I do and it was missing for a while, and I'm short and scrapping the middle of my windshield without it is a pain
- That Good Earth Caffeine Free Original Tea is just as good as the version with caffeine.
- The thoroughness of procedures before Obsidian's MRI next week to try to make sure there are no problems during it. And how quickly it is going to get done (10 days after we agreed to doing it. If it was an "emergency" MRI it would have done that day, but this is considered "elective" so it has to go through normal scheduling).
Wednesday, January 19, 2011
Pouring
So, just to tick me off yesterday either (a) my primary email account got hacked into or (b) my computer picked up a nasty virus that my anti-virus and anti-spyware is not picking up. Normally I would try to fix this myself. I just don't have the time nor the temper. So with the recommendation of a friend, my computer is going in to get serviced/fixed. Rock on.
I really could have dealt without this.
Oh yes. My MIL announced that she still is not well enough from the cold she got when we were up there 2.5 weeks ago so chemo starts next week. This has me worried as my kids picked up what I assume is the same cold (she started coughing when we were there on Saturday, my kids started coughing on Sunday night), and they were fine by Wednesday. (Then we all caught an entirely different puking bug, but that is a different story). If a cold can knock her down this much, what is chemo going to do? So Jet will be gone a day next week.
I really could have dealt without this.
Oh yes. My MIL announced that she still is not well enough from the cold she got when we were up there 2.5 weeks ago so chemo starts next week. This has me worried as my kids picked up what I assume is the same cold (she started coughing when we were there on Saturday, my kids started coughing on Sunday night), and they were fine by Wednesday. (Then we all caught an entirely different puking bug, but that is a different story). If a cold can knock her down this much, what is chemo going to do? So Jet will be gone a day next week.
Tuesday, January 18, 2011
Happy New Year
As New Year's was approaching, I was being pessimistic. I would rather like to call it realistic, but in reality, it was just plain pessimistic. Typically I'm not that pessimistic of a person. However with my MIL and her health problems, Obsidian and his continuing medical mystery/issues, and Pyrope starting kindergarten, the situation of Jet's job, and the major changes happening at my job in the first quarter of this year, I just was not thinking this would be a "happy" year in an easy sense.
And so far, it has been best skipped.
My MIL decided she is going to do chemo. Which is relatively good. However, her expectation of it is not that realistic. She does not think she is going to feel bad after each round, and plans on just stopping if she gets sick. She does not think she wants a ride from strangers, so Jet will possibly going to take her to chemo, sit with her, take her home, make sure her apartment is stocked, then drive back home. And repeat every 3 weeks for 6 rounds... if she makes it through all 6 rounds. Jet and I were talking about the "what ifs" including prognosis if she chooses not to have further treatment. He thinks that she will be around for another 2-3 years "at least". From my Goog.le knowledge, I'm thinking it is significantly less. A lot less. Since this is not a doctor's prognosis, and even that could be wrong, I just am not getting a good feeling about it. MIL just didn't not look good when we saw her. I am dreading if Jet and his family are blindsided.
The endocrinology appointment for Obsidian was interesting. I'm not going to go into the things that ticked me off about the doctor, as it really is not an issue that is close enough to the top of my "to think about" list. Bottom line being, we have agreed to a MRI of his head. Since he is so small, and has the history of cardiac issues, it is going to have additional hoops than an MRI of the head normally is. The fact that they are looking for a pituitary tumor, or one pressing against it, hydrocephalus, evidence of mitochondrial disease, makes me uneasy. I would love an answer to Obsidian's medical issues... but I know I will potentially have issues accepting a diagnosis. I don't even know if that sentence made the least amount of sense.
Trying to get things ready for the MRI has been a bit of a challenge. Making sure insurance is going to approve it. Trying to make sure that everything his neurologist and geneticist also want looked at are looked at. Finding someone to watch Pyrope while we are with Obsidian. All of the logistics of it.
If the doctors still think Obsidian needs growth hormone replacement therapy (which is the current thought), we have to find out if our insurance (a) covers it then (b) if they will require a growth hormone stimulation test prior to approval. This does not sound fun. Very unfun actually. This would be the 3rd time in a period of a month that I will have to have Obsidian fasting (he has to do some bloodwork prior to the MRI that requires fasting, then to be drawn at a specific lab that is an hour from our house at that time of day, then the day of the MRI he will have to be fasting until it is done because they will have to put him under general anesthesia to do it). Obsidian doesn't do fasting well. If he does have to do the growth hormone stimulation test, I'm considering buying this as a distraction/reward/bribe for him. We have the Toy Story Imaginext Junkyard playset and the two of them play with it daily (and they got it for their birthdays last summer, and I think they have still played with it daily). Lately they have been getting into "superheros", so I think they would love it. And I would be willing to spend that amount of money to keep him at least somewhat entertained during the 3 hours it will take to complete the test. I would really rather not have to go through that test. I would rather try growth hormone replacement and see if it helps (as there are even some biochemical indicators that is a problem).
My brother and his wife had been in Maui for 2 weeks. On the plane ride home, my brother got sick. He got home and went to the doctor. He was directly admitted to the hospital because he had diverticulitis and an infection. He is hoping to get released today. My mom is not the most stable person mentally. And this has thrown her for a loop. And it is not fun dealing with her. At all. I dislike family drama, and there has been more than enough.
So if the first 15 days of 2011 is any indication of how it is going to go, I want to hibernate until 2012.
I've been doing battle this past week with our insurance coverage. Jet and I are considering suing over some of the issues. It is a long story, and I don't want to get into it as it just makes my blood pressure sky rocket.
And so far, it has been best skipped.
My MIL decided she is going to do chemo. Which is relatively good. However, her expectation of it is not that realistic. She does not think she is going to feel bad after each round, and plans on just stopping if she gets sick. She does not think she wants a ride from strangers, so Jet will possibly going to take her to chemo, sit with her, take her home, make sure her apartment is stocked, then drive back home. And repeat every 3 weeks for 6 rounds... if she makes it through all 6 rounds. Jet and I were talking about the "what ifs" including prognosis if she chooses not to have further treatment. He thinks that she will be around for another 2-3 years "at least". From my Goog.le knowledge, I'm thinking it is significantly less. A lot less. Since this is not a doctor's prognosis, and even that could be wrong, I just am not getting a good feeling about it. MIL just didn't not look good when we saw her. I am dreading if Jet and his family are blindsided.
The endocrinology appointment for Obsidian was interesting. I'm not going to go into the things that ticked me off about the doctor, as it really is not an issue that is close enough to the top of my "to think about" list. Bottom line being, we have agreed to a MRI of his head. Since he is so small, and has the history of cardiac issues, it is going to have additional hoops than an MRI of the head normally is. The fact that they are looking for a pituitary tumor, or one pressing against it, hydrocephalus, evidence of mitochondrial disease, makes me uneasy. I would love an answer to Obsidian's medical issues... but I know I will potentially have issues accepting a diagnosis. I don't even know if that sentence made the least amount of sense.
Trying to get things ready for the MRI has been a bit of a challenge. Making sure insurance is going to approve it. Trying to make sure that everything his neurologist and geneticist also want looked at are looked at. Finding someone to watch Pyrope while we are with Obsidian. All of the logistics of it.
If the doctors still think Obsidian needs growth hormone replacement therapy (which is the current thought), we have to find out if our insurance (a) covers it then (b) if they will require a growth hormone stimulation test prior to approval. This does not sound fun. Very unfun actually. This would be the 3rd time in a period of a month that I will have to have Obsidian fasting (he has to do some bloodwork prior to the MRI that requires fasting, then to be drawn at a specific lab that is an hour from our house at that time of day, then the day of the MRI he will have to be fasting until it is done because they will have to put him under general anesthesia to do it). Obsidian doesn't do fasting well. If he does have to do the growth hormone stimulation test, I'm considering buying this as a distraction/reward/bribe for him. We have the Toy Story Imaginext Junkyard playset and the two of them play with it daily (and they got it for their birthdays last summer, and I think they have still played with it daily). Lately they have been getting into "superheros", so I think they would love it. And I would be willing to spend that amount of money to keep him at least somewhat entertained during the 3 hours it will take to complete the test. I would really rather not have to go through that test. I would rather try growth hormone replacement and see if it helps (as there are even some biochemical indicators that is a problem).
My brother and his wife had been in Maui for 2 weeks. On the plane ride home, my brother got sick. He got home and went to the doctor. He was directly admitted to the hospital because he had diverticulitis and an infection. He is hoping to get released today. My mom is not the most stable person mentally. And this has thrown her for a loop. And it is not fun dealing with her. At all. I dislike family drama, and there has been more than enough.
So if the first 15 days of 2011 is any indication of how it is going to go, I want to hibernate until 2012.
I've been doing battle this past week with our insurance coverage. Jet and I are considering suing over some of the issues. It is a long story, and I don't want to get into it as it just makes my blood pressure sky rocket.
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