Ready or not, today, Obsidian is starting growth hormone therapy. Tonight, a nurse is coming to the house to do the training. He does not know this. As he is 2.5, I don't know how much he would understand if I tried to explain. I'm guessing he would understand the basics of "You will now get a shot everyday. For always." He knows what shots are as I have type 1 diabetes, so it is something that has always been part of his life. He hasn't been the one getting injections, but the idea of shots is a concept that he sees at home. He knows how a shot feels. I don't anticipate Obsidian is going to be happy about this. I don't know how much he will understand how these shots will (hopefully) help him grow big and be able to play with other kids longer before getting tired. I'm guessing he will understand more of it than we expect he does.
I'm not even vaguely concerned about the training. I've questioned myself about this, but each time I come up with the answer, nope. I don't think it will be much different than using an insulin pen. I know how to give injections on both myself and others. I've done it regularly (to both myself and others). I haven't given them to anyone who has been fighting against it. I hope I don't have to get too much experience with that. In the back of my head, I'm thinking I might get a lot of experience with that (but that is an entirely different issue than the training and the mechanics of how to give an injection).
I'm worried it won't work as hoped. I'm worried that Obsidian will be one of the unlucky ones that have one of the serious side effects (largest one being increase in intercranial pressure... partly because this is just bad, partly because Obsidian doesn't have the verbal skills to completely express the symptoms accurately as soon as they start appearing). A dislocated/broken hip would be bad as well. Then past the side effects part, I'm worried he won't start growing as hoped. There is not blood test that we can see if he is working right away. It is simply to wait 6 months to a year and see if he growth velocity has improved. I'm worried that ped. endo that we are meeting with later this month will not agree with this course of action and we will have to decide. I'm trying hard to "not barrow trouble". It is hard to not get really excited with the idea that the growth hurdle for Obsidian is about to be passed, I'm afraid of getting too excited about growth to be crushed months from now when nothing has changed. Which is obviously a possibility. Particularly since Obsidian is not a "textbook" growth hormone deficient (GHD) kid.
Whether or not if I'm mentally ready for it, today is the day. I don't think I would every be fully "ready" for this leap.
UPDATE: So training was all of 15 minutes, if that. Obsidian did alright. When he realized he was about to get a shot, he tried to grab it out of my hand and said "No want it. No. Don't" I did it, and then he stopped fussing and was smiling at me and the nurse and talking something about trains and fire engines.
Monday, January 31, 2011
Sunday, January 30, 2011
In someone else's words...
"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12
Saturday, January 29, 2011
Tea Party
If anyone was wondering what you need to host a tea party if you are a 4 year old boy:
- Hot Chocolate with marshmallows (this occasionally changes to juice)
- Little 4 oz cups (like you find in bathrooms) to serve the hot chocolate in
- Sugar cookies in the shape of the letters of the names of each of the people attending
- Nerf guns
Friday, January 28, 2011
Grief
I've been/am in a foul mood today. My temper is short (which can be a chronic problem of mine). After overreacting an embarrassing number of times to something one of my boys did, I'm sitting and thinking to why I keep doing this. I had a short fuse as a child, but for the most part I can control it. Typically it is if I'm under stress of some sort that I can't. Obsidian is napping, and Pyrope is as well (which is very unusual, and come 10 tonight I'll be regretting it, he is snuggling next to me on the couch so I doubt the real sleep will be long).
During ice skating lessons for Pyrope, Obsidian asked to wear skates and try. I've been encouraging this. He didn't have the strength or balance to stand up on the skates without help, but he enjoyed himself for 20 minutes and was trying with me helping. I got home and there was a message on my answering machine to place the order for the growth hormone that Obsidian will be starting. Listening to the message on the answering machine, I couldn't figure out the phone number to call. Part of it was the lady was just talking fast, the other part I know was my dyslexia (which once again only really significantly affects me at this point if I'm really stressed). After trying at least a dozen times, I decide to just put Obsidian down for his nap, then call the general mail order pharmacy line (which it is a specialty item, so there is a different number, but I knew that eventually I would be connected to the right spot if I called the general line). 23 minutes later, the medication was ordered, it will ship today and be here sometime tomorrow, council by the pharmacist (which was mainly going over all of the possible side effects, some of which are scary, particularly with someone's Obsidian's age because he can't communicate as well as an older child or adult), and called a second program so the referral for the nurse to come out to our house to train us (mainly me) on how to administer it.
I really hope that this helps with Obsidian's growth issues and helps with his gross motor delays as well. I'm scared that they won't. I'm scared that he will have one of the serious side effects. I'm scared that this won't help. I'm scared that some of the other signs that Obsidian shows that are not typically associated with GHD really should be cluing in to the doctors that this is not the problem. I'm dreading Obsidian's reaction to having a shot every day. He will get over it, so this is pretty far down on my list of worries. I'm sad that even if growth hormone therapy works, it is really a patch more than anything else. It is not "fixing" anything, just replacing something on the outside. I'm sad that if it works, there is a very good chance Obsidian will have to do this every day for the rest of his life (if not for the rest of his life, at least through his teenage years).
The biggest thing is that underlying all of this is that I'm sad, a level of grief, that my child does not appear to be dealt one of the better hands health wise. It could be far far far worse, but it is still not what I had dreamed and prayed and hoped for him.
I know that after this period of grief, there will be some level of acceptance. If I work towards it. Most of my fears will abate. Obsidian will be used to the shots. My fears of side effects will fade. We will know if it is working or not. This will not "pass", but it won't feel as sharp as it does today.
During ice skating lessons for Pyrope, Obsidian asked to wear skates and try. I've been encouraging this. He didn't have the strength or balance to stand up on the skates without help, but he enjoyed himself for 20 minutes and was trying with me helping. I got home and there was a message on my answering machine to place the order for the growth hormone that Obsidian will be starting. Listening to the message on the answering machine, I couldn't figure out the phone number to call. Part of it was the lady was just talking fast, the other part I know was my dyslexia (which once again only really significantly affects me at this point if I'm really stressed). After trying at least a dozen times, I decide to just put Obsidian down for his nap, then call the general mail order pharmacy line (which it is a specialty item, so there is a different number, but I knew that eventually I would be connected to the right spot if I called the general line). 23 minutes later, the medication was ordered, it will ship today and be here sometime tomorrow, council by the pharmacist (which was mainly going over all of the possible side effects, some of which are scary, particularly with someone's Obsidian's age because he can't communicate as well as an older child or adult), and called a second program so the referral for the nurse to come out to our house to train us (mainly me) on how to administer it.
I really hope that this helps with Obsidian's growth issues and helps with his gross motor delays as well. I'm scared that they won't. I'm scared that he will have one of the serious side effects. I'm scared that this won't help. I'm scared that some of the other signs that Obsidian shows that are not typically associated with GHD really should be cluing in to the doctors that this is not the problem. I'm dreading Obsidian's reaction to having a shot every day. He will get over it, so this is pretty far down on my list of worries. I'm sad that even if growth hormone therapy works, it is really a patch more than anything else. It is not "fixing" anything, just replacing something on the outside. I'm sad that if it works, there is a very good chance Obsidian will have to do this every day for the rest of his life (if not for the rest of his life, at least through his teenage years).
The biggest thing is that underlying all of this is that I'm sad, a level of grief, that my child does not appear to be dealt one of the better hands health wise. It could be far far far worse, but it is still not what I had dreamed and prayed and hoped for him.
I know that after this period of grief, there will be some level of acceptance. If I work towards it. Most of my fears will abate. Obsidian will be used to the shots. My fears of side effects will fade. We will know if it is working or not. This will not "pass", but it won't feel as sharp as it does today.
Thursday, January 27, 2011
Thankful Thursday
- Obsidian's MRI is done and that all is "normal"
- That things are moving fairly quickly forward on the medical issues with Obsidian, by early next week, he will have started on growth hormone
- For at least the next year, Obsidian's growth hormone therapy shouldn't cost us anything out of pocket after we reach our deductible (which I think we already have)
- How much my kids love my mom, and how much my mom loves my kids
- J&J Soothing Vapors Bath and cool mist humidifiers
- The big leaps Pyrope has recently been making in speech and some concepts
- Co-workers that pick up my slack on the days I really need it
- Friends who listen to my worries and not minimize them
- Finding out Rick Riordan's new book is going to be released May 3rd, I've pre-order it already
Wednesday, January 26, 2011
Monday, January 24, 2011
Normal
Before I even made it home from the MRI (thanks to Obsidian not reacting well to coming out of the inhaled anesthesia, was advised to avoid having go under inhaled anesthesia again, or at least to warn the doctors of how violent he was coming out of it), I got a phone call. The MRI of his brain and pituitary are normal. Yea! I was told it might be a few weeks before our insurance gets back with us on the growth hormone and if they are going to require a growth hormone stimulation test.
Sunday, January 23, 2011
Game On
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.
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.
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.
Saturday, January 15, 2011
No "right" answer
In college I had one professor in particular that had multiple choice tests that were "choose the best answer" not choose the "right" answer. I hated those questions. I would rather have an in class essay, a take home essay, a project, a presentation, a practical, a term paper, anything except the "best" answer, as there would be at least two answers that were correct, but I had to divine which would be best in my professor's opinion. Unless it was obvious (which most of the time it wasn't), I would write the pro's and con's for each answer. I would think of how I would weight each pro and con. Then I would try to think how my professor would weight each pro and con from what she had said in lectures and through my general knowledge of her and how she thought. It was maddening. There was little recourse if I picked a correct but not "best" answer. I was a rare person because I occasionally would win credit or partial credit for my "best" answer because of my pro/con list and weight marks I would make in the margin of my test. My test books were a mess by the time I was done if you were wondering.
I've found those tests, while annoying, taught me about life (and I guess the subjects they were supposed to, but to be honest, I can't even remember the specific classes that professor taught). Or maybe more specifically, they taught me how to critically think about a series of possible answers. My pro/con lists, with notations of which pros and cons were more important than the others.
Obsidian had an appointment this week with his genetics doctor. His weight has stayed on his curve for weight gain. According to the measurements, he lost 1cm of height. We are going with the assumption that he didn't shrink. When Dr. N and I last talked, there was significantly less information on Obsidian's chromosomal deletion than there is now. He had a fair size file of the articles that have been written regarding del 15q11.2, including some that are yet to be officially published. 6 months ago, his deletion was not linked to small stature or gross motor delays. Now, there has been some other cases that there was small stature and/or gross motor delays. The strongest links are still to more behavior, cognitive, and seizures problems. There are completely "normal" people that have also been found to have the deletion. Current thinking on the deletion (to the best of my understanding) is that it leads to a genetic predisposition of a number of problems. Obsidian either inherited the deletion from Jet or I or it is a de novo deletion. The researchers are now thinking when it is inherited, the children have similar issues to what the carrier parent has. So in Obsidian's case, since Jet nor I have any of the signs/diseases associated with it, the working assumption would be that Obsidian would not be at that much more risk for the problems that show up later than the general population. 6 months ago, Dr. N did not see any benefit for having Jet and I to have a chromosomal study done (unless we wanted it for family planning purposes, which we don't). So Jet and I were happy to not open that can of worms. However, now, he is recommending we at least consider it if our insurance covers it (which is a whole different issue for a different rant). If it was just looking for the 15q11.2 deletion it would be one thing (and we could request no other information be given to us). But we could find out something could indicate future health issues for one of us. And what real, tangible is not the correct word, benefit would it be to Obsidian? Yes, he has the deletion. Yes, we are aware of the problems that might show up in the future. But no one can predict if they will be problems for him. He has not had any of the most common issues (being seizure disorder, mental retardation, and delayed speech). We might not be as concerned, but it will always be there (at least until he is in his late 20's-early 30's as most of the time it shows up before that point). There is always the chance he would/will develop them even without the deletion (however, he wouldn't be Obsidian if it weren't for the deletion because it is part of him).
So Jet and I need to decided, unanimously on a question (to be tested or not), that does not have any real "right" answer. Just a "best" answer. A best at the current time. A best for the future (as seen from now). At this point, I'm leaning towards no. We will wait and see more. We can always choose yes in the future, but we can't change our mind back to no...
I've found those tests, while annoying, taught me about life (and I guess the subjects they were supposed to, but to be honest, I can't even remember the specific classes that professor taught). Or maybe more specifically, they taught me how to critically think about a series of possible answers. My pro/con lists, with notations of which pros and cons were more important than the others.
Obsidian had an appointment this week with his genetics doctor. His weight has stayed on his curve for weight gain. According to the measurements, he lost 1cm of height. We are going with the assumption that he didn't shrink. When Dr. N and I last talked, there was significantly less information on Obsidian's chromosomal deletion than there is now. He had a fair size file of the articles that have been written regarding del 15q11.2, including some that are yet to be officially published. 6 months ago, his deletion was not linked to small stature or gross motor delays. Now, there has been some other cases that there was small stature and/or gross motor delays. The strongest links are still to more behavior, cognitive, and seizures problems. There are completely "normal" people that have also been found to have the deletion. Current thinking on the deletion (to the best of my understanding) is that it leads to a genetic predisposition of a number of problems. Obsidian either inherited the deletion from Jet or I or it is a de novo deletion. The researchers are now thinking when it is inherited, the children have similar issues to what the carrier parent has. So in Obsidian's case, since Jet nor I have any of the signs/diseases associated with it, the working assumption would be that Obsidian would not be at that much more risk for the problems that show up later than the general population. 6 months ago, Dr. N did not see any benefit for having Jet and I to have a chromosomal study done (unless we wanted it for family planning purposes, which we don't). So Jet and I were happy to not open that can of worms. However, now, he is recommending we at least consider it if our insurance covers it (which is a whole different issue for a different rant). If it was just looking for the 15q11.2 deletion it would be one thing (and we could request no other information be given to us). But we could find out something could indicate future health issues for one of us. And what real, tangible is not the correct word, benefit would it be to Obsidian? Yes, he has the deletion. Yes, we are aware of the problems that might show up in the future. But no one can predict if they will be problems for him. He has not had any of the most common issues (being seizure disorder, mental retardation, and delayed speech). We might not be as concerned, but it will always be there (at least until he is in his late 20's-early 30's as most of the time it shows up before that point). There is always the chance he would/will develop them even without the deletion (however, he wouldn't be Obsidian if it weren't for the deletion because it is part of him).
So Jet and I need to decided, unanimously on a question (to be tested or not), that does not have any real "right" answer. Just a "best" answer. A best at the current time. A best for the future (as seen from now). At this point, I'm leaning towards no. We will wait and see more. We can always choose yes in the future, but we can't change our mind back to no...
Friday, January 14, 2011
Yes to chemo
After much thought on my MIL's part, she has decided to at least try chemo for her ovarian cancer. If things go as planned, she will be starting next week. If things go as hoped, there will be 6 rounds of chemo followed by hormone therapy. I hope things go well. For her sake. For Jet's sake. For my sister-in-law and her family. Our kids don't really know her, and only see her once a year, so it won't impact them as much.
Jet and I didn't wish each other "Happy New Year's" this year as it would have just felt hollow and sarcastic. MIL cancer and its treatment being one major reason. Once again this year we are not planning any family vacations so he can spend his vacation time caring for her if needed. She lives alone and my SIL is... unable/unwilling to help. So the plan is Jet will go up and care for her in the days she needs him after each treatment. I don't begrudge my MIL time with Jet. And I don't begrudge Jet time with his mother, but it does make it hard on me. Particularly when I see my SIL living less than 10 miles away and unable to help because she doesn't have the time, but she has the time to go on week long vacations, weekend getaways, and out of town dance competitions with her girls. For the 2nd year running, our "vacation" throughout the year is periodically having to be a single parent and keeping the house going on my own. At times I feel guilty about this, at others I feel justified, and others just frustrated by the whole situation.
I just hope this buys my MIL time on the good outcome sides of the statistics. 50% survival rate at 2 years, 40% at 5 years (although it might have changed because those are for people who start chemo within a couple weeks of surgery, and my MIL will be close to 3 months as it took that long to decide).
Jet and I didn't wish each other "Happy New Year's" this year as it would have just felt hollow and sarcastic. MIL cancer and its treatment being one major reason. Once again this year we are not planning any family vacations so he can spend his vacation time caring for her if needed. She lives alone and my SIL is... unable/unwilling to help. So the plan is Jet will go up and care for her in the days she needs him after each treatment. I don't begrudge my MIL time with Jet. And I don't begrudge Jet time with his mother, but it does make it hard on me. Particularly when I see my SIL living less than 10 miles away and unable to help because she doesn't have the time, but she has the time to go on week long vacations, weekend getaways, and out of town dance competitions with her girls. For the 2nd year running, our "vacation" throughout the year is periodically having to be a single parent and keeping the house going on my own. At times I feel guilty about this, at others I feel justified, and others just frustrated by the whole situation.
I just hope this buys my MIL time on the good outcome sides of the statistics. 50% survival rate at 2 years, 40% at 5 years (although it might have changed because those are for people who start chemo within a couple weeks of surgery, and my MIL will be close to 3 months as it took that long to decide).
Thursday, January 13, 2011
Thankful Thursday
In no particular order:
- My front loading washing machine
- The "sanitize" option on my dish washer
- The flu shot (while we all got sick, very consistently the people who did not get it were much much more sick and it lasted a long time)
- Specific people in my life and my children's lives that have the knack of saying and doing just the right thing at just the right time
- Having an occupation that lets me have a wide variety of options, that I can fairly easily execute if I choose that path
- PBS kids shows, and BBC kids shows on Net.flix
- Heavy comforters, I just love curling up under them during the colder month
Wednesday, January 12, 2011
Thursday, January 6, 2011
Thankful Thursday
- That we live so close to so many world class health care options.
- Good Earth tea. Yum.
- Good books.
- MP3's, you can bring a whole bunch of music with you anywhere.
- The ability to connect to others I wouldn't otherwise be able to by the internet.
- Unseasonably warm weather
- Floor space in my living room again.
Wednesday, January 5, 2011
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