Just everything

Somehow, 'everything' seems to be happening this summer.

Most of the things in isolation would cause me some stress but not knock me down.

However, I feel knocked down.  Or ready to be knocked down.  But I'm stubborn.  Very stubborn and I keep going.  As I've burst into tears a couple times in the last few week with "I don't want to do this anymore" as I'm talking with my best friend, I know that I will.  She knows that I will.  I just don't like it.

Pyrope has started kindergarten.  He is not particularly enjoying it.  His best friend is in his class, which he likes.  However, he has informed me on several occasions it is easier for him to learn when I teach him at home.  There is too much noise at school.  While I agree that I can teach him more academically at home, I saw a very significant decrease in his social and verbal skills since he has been out of school since May.  On top of this, he will neither live, go to school, or eventually work in a bubble.  He has to learn how to function in the "real world".  Academically, he can learn virtually nothing this year, and he will still "pass" kindergarten, as his reading and math skills test at least at a 1st grade level, in some areas a 2nd grade level.  So on we will go.  With lots of communication to the teacher.  I will continue to work on reading, writing, and math at home.  He will go to school, communicate with others, socialize, and try to learn how to learn while there.

Obsidian was taken off of growth hormone in July.  It wasn't working.  The blood tests proved it was not working.  His growth velocity had not changed.  There is a different hormone, IGF-1, he is now on.  Getting it approved of by the insurance is being a chore.  My main problem right now is with his doctor.  If I could switch doctors I would.  Problem being, I can't (practically).  The pharmaceutical company that makes it is supplying him (for up to 8 months) with the medication while we are trying to get it approved by insurance.  He has been on it for slightly less than 3 weeks.  By my measurements (and they have always been accurate in the past), he has grown more in the 3 weeks he has been on IGF-1 than the 6 months he was on GHT (2.6 cm vs 1.9).  I'm hoping I'm measuring correctly.   I'm hoping (and trying my best) to make sure he can continue on the drug.  At this point, I'm not really looking for answers for Obsidian and his medical issues, but just looking for the best treatments I can find.  If there is a way to increase his growth rate so he is a typical (or closer to it) height as an adult, it would be great.  If a way is not found, I just need to focus on teaching him how to function in a world that is made for adults that are above 5', when he will most likely be right around 4'.  I really hope this does give his body what he needs to grow to his genetic potential (which is most likely somewhere in the 5'8" to 5'11" range based on family history). 

My work is work.  My boss that I like has been moved to a different facility.  The one that I have never got along with is it.  She is a nice person, but somewhat lacking in managerial skills that would be beneficial to her job.

Jet's job has degraded to the point he updated his resume.  This is a large step for him.  Finding a job won't be an issue, he just doesn't like change.  So he drags his feet when it is time to change.  He really has not seriously began to look, apply, or interview.  Hopefully the day is coming sooner now.  I would have long been gone, for various reasons.

Jet and I have been arguing.  I really keep getting the feeling he doesn't see or get my point.  Sometimes I think he is trying to taunt me by his actions, but when I stop and really think, I don't feel he is purposely taunting me per se, he just doesn't get what my issue is.  No matter how I explain it, or try to have others help me explain it.  I'm tired of the argument.  I want some sort of resolution.  Even if it means a resolution that I don't particularly like or want.  I just don't like where we, or rather our relationship is.  Or the cycle we seem to be stuck in.  Jet doesn't appear to be nearly as bother by all of it.  That or he is just hoping it will go away, which is really the most likely scenario.

A couple of the positions I took on this spring in organizations are more than I anticipated.  Not horribly more.  Not more than I can handle.  Just more than I expected.  And I find it wearing.  I keep saying that soon that will calm down.  And it really should.

Not working

I've been measuring Obsidian as I always do.  Since he was a premie and he has inital jaundice issues, I've weighed and measured him regularly.

So I knew that his growth had not excellence in the 6 months he was on growth hormone.  It was the same for all intents and purposes.  Bloodwork needed to be done to make sure there was not significant improvements in his IGF-1 factor.  The doctor was supposed to call me with the results and to discuss the plan.  At the appointment he didn't want to go into detail because he didn't have all of the information yet (I had called to ask to do the bloodwork prior to the appointment as I knew he didn't grow as hoped, but doctor wanted his measurements to prove this prior to bloodwork).  I was told it could take up to a week after the bloodwork was drawn.

Lo and behold, 5 days after the bloodwork was drawn, I got a letter in the mail (mailman delievered our mail at 4:30 that day, doctor's office closes at 4.  Some days we get our mail by 8:30 am)..  Well, that is somewhat inaccurate.  I got a copy of the office visit note (which is standard for where we go).  Initially I was reading through it.  No new news.  Then I get to page 5 of 5.  The results of the new bloodwork are in.  Appearently I'm to immediately stop giving him GH, and as soon as insurance approves, he is to be on another medicine.  That is injected.  Twice a day.  Oh yes, his diagnosis to why he isn't growing is something different.

Being the information craving Mama Bear that I am I research the drug some.  There are some different details with this drug.  It must be given with food.  If not, Obsidian can become hypoglycemic.  In general, Obsidian can now become hypoglycemic (but the risk is particularly high if he doesn't have a full meal within 20 minutes of eating).  When I talk to the doctor the next day, he does not mention this.  I bring it up to him.  He said, oh yes, that could happen.  I'm sure my nurse will tell you about that.  She'll contact you in the next week.  But if you haven't heard from her in 2 weeks, call us.  Don't worry my friend.  I will be all over you case in less time than that.

I'm curious to how this is going to pan out with our insurance.  This is a relatively new drug, released in 2005.  It is not considered experimental, but at the same time, there is not a large body of evidence yet.  The large long term longitudinal studies do not exist.  Partly because of time.  Partly because it is rare.  It is an expensive drug.  As Obsidian is 3 and if it works he will have to take it until he has completed puberty, this will be a long term treatment.  It is an expensive drug.  All of these things combined, make me wonder if he will be approved.  Or if I will have to jump through hoops.  Or do battle.  Or if I will win the battle.

And I'm tired.  And sad.  I knew that the odds were not in his favor for growth hormone to work as well as it can in some people, but I had hope.  You have to have hope to enter in on something like that.  I have hope that this new drug will help.  I have fear that it won't.  I have a fear that we will not get the chance to find out if would work.  I have a fear we will find that it does work, switch insurance (which we do regularly, long story, I am not a fan of the US healthcare system as it is today) and they don't approve it.  I have a fear that I will have episodes of hypoglycemia to deal with.  I fear that Obsidian will have to deal and feel hypoglycemic.  I know how that feels, and it sucks.  I fear that there are negative long term risks, risks that we don't even know are risks.  By the time that data is in, it will be far to late for Obsidian.  So many people think it is the actual injection that is the "bad" part.  Honestly, I could care less.  I have no issue or fear of that.  Obsidian doesn't like shots, but it is not an ordeal.  It will become a part of life, as did the bedtime one did.  I'm not looking forward to it.  I dread even more having to every day have a full breakfast and dinner for him and making sure if he/we are out at those times I have the stuff packed and with him/us.  But is a dread like filling up my car with gas when it is 10 degrees below zero.  You live with it, you do it.

It is the other fears that keep me up.  But one foot in front of the other.  As my new keychain says:

God grant me 

the serenity to accept the things I cannot change

the strength to change the things I can

and the wisdom to know the difference

Observations for personal use only

Recently, I was at work, in an elevator and someone asked me "So when is the little one due?"

"I'm not."

"Oh, I'm sorry.  I didn't mean to.  I'm sorry.  Well you know... You must get that a lot."

Um no.  Please let the doors of this elevator open so I can get the heck out of here.  The worst and at the same time most humorous part of the conversation was she had no idea that her last sentence was way worse than the first part of the conversation.

Then today as I was dropping off Pyrope at gymnastics camp. A mom that I used to see regularly but now don't see that often was there dropping off her daughter who is a few months older than Pyrope.  Her younger daughter is 20 months old.  My best friend was standing next to me, she was dropping off her older daughter and had her 2.5 year old with her. 

My best friend says "E and L have really grown a lot since I've seen them last!"

I chime in "They really have."

Other mom says "It is fun to see how much kids have grown when you haven't seen them in a while.  It is hard to see in your own kids.  A, B, and Pyrope have really grown too.  Obsidian's the same as always."

Now I understand that Obsidian who will be 3 in less than 3 weeks is smaller (as in shorter and I'm guessing lighter) than her 20 month old daughter, but I really don't like it so bluntly and vocally observed.  Even less than the fact that I could lose some weight around my mid-section.

As we were leaving, the mom that made the comment went out ahead of us (as she was carrying her daughter, and Obsidian and my best friend's daughter were messing around).  We were joined by another friend that we see regularly.  My best friend made a comment in her not so subtle way of asking me if I was okay, repeating the comment of the other mom of how much that must hurt to hear.  The other friend said before I could reply, "Now no one would make a comment like that!  It is so... so..."  My best friend said something along the lines of it was a direct quote made in the last 5 minutes.  I just said some people don't think before they speak.  This person was not trying to be mean, just making an observation.

Some observations are best kept to oneself.

Unexpected

Today I took Obsidian for a second opinion in with a different geneticist.  I did not particularly feel the need to do so, but this particular doctor had been brought up to me by 3 different people who do not know each other (a doctor, a friend, and a co-worker who happens to be a doctor).  So I figured, if each of these people brought it up, I should do it.  Just to cover the bases.

I liked her.  In many ways she is more friendly than the one we have, but he is nice enough.  And he is a preferred provided (and she is not).  She commented on how I had covered all of my bases appropriately, but at this point, it does not appear that there is "an answer".  Obsidian's chromosomal deletion might be the root of his issues, but it might not.  That to keep plodding along with eyes open to clues of what is the underlying cause, and to treat any of the specific symptoms that can be treated.  Essentially, continue on with what we are doing.

The unexpected came from doing the family tree.  Jet's mother was diagnosed in a span of 3 months, 3 types of unrelated cancer.  This is good in the sense it isn't mets in 2 places as well as an original site.  However, it is suggestive of a genetic basis.  Particularly with her sister (her only sibling) having a fairly advanced colon cancer diagnosed in her 50's.  Her suggestion was at least genetic counseling for my MIL to look at the risk of it being a genetic predisposition so there can be a recommendation if it is advisable for genetic testing.  Since 2 of my MIL's 3 cancers are female reproductive cancers, the implications are significantly more for my SIL and her two children (that are both girls).  I asked about Jet and our boys, she said that the chances for them are most likely not that affected even if it is genetic because Jet is male, and our kids are male.  But it could be.

Jet didn't have a lot to say after I brought this up.  He was thinking.  He did try to call his mother, but just got the answering machine (she doesn't go out much, but sits with her laundry as someone in the building keeps stealing laundry... this is a senior apartment complex.  Really, stealing laundry?)

So it was what I was expecting as far as Obsidian.  But I was caught unawares...

Bad, good, or neither

This morning, I went up to the rec center.  Alone.  I tried to talk with the aquatic director, but learned something interesting.  Something that gave me hope that there is a reasonable explanation instead of out right discrimination with the swimming lesson and Obsidian thing.  There is a new aquatics director.  However, she was not there today.  I explained to the woman at the front desk my issue.  Her comment was essentially, "That sounds like a problem"  Which I take as a positive comment.  I will see where this goes.  I left my name and phone number to be called back about.  And if I don't get a call, I'm there often enough, I will run into her.  That is my "good".  I really try to be optimistic, and really try to believe that people do not so blatantly discriminate.

I have been thinking about what I'm going to say to Obsidian when the questions start.  And knowing him, they will.  I have some time, as for the next 3 weeks he will be in gymnastics class at the same time and will not see the little girl in Pyrope's class.  But Pyrope's swimming class has 3 more sessions after Obsidian's gymnastics is over.  Obsidian does not miss much.  He knows he doesn't go to swimming lessons at the rec center because he is too young to take them there.  He wants to be in a class with Pyrope and other kids he knows.  Jet and I are very careful with our wording of "too small" and "too young".  And we have consistently said "too young" for swimming.  And knowing him, he will realize the other little girl is about his age.  (If something has a height requirement, we tell him he is "too small", if it is because he is not old enough, we say "too young"... once again we are somewhat anticipating him always being very small but we don't want that to stop him or for him to use it as an excuse).  I want to be honest with him.  I want to teach him to defend himself.  There is a good chance that his height will remain a lifelong issue for him.  But he is 2.5 years old.  This potentially will be the first time I will have to directly address this with him.  And I'm not looking forward to it.  I want to set a standard tone from the beginning.  A positive tone, but one that does not put up with discrimination.

The bad is my MIL.  She is feeling worse since her last round of chemo.  She is not beginning to feel any better, and it has been over a week.  Most bothering, she is short of breath quite a bit (even just talking on the phone) and seems to be retaining fluid.  She is thinking of stopping chemo at this point.  Very shortly after it has shown signs of improving.  It is a choice.  And only hers to make.  But it is hard to watch.  Most specifically, it is hard for me to watch Jet have to go through it.  I don't interact with my MIL much.  We (the kids and I) see her once a year now.  The kids talk to her on the phone occasionally, but she is almost more abstract to them than a person involved in their lives.  I find myself praying for peace and acceptance.  I have a feeling at this point, that is the most I can do (I'm willing to do more, I just don't think there is anything to be done).

Walking by Faith

One of my favorite hymns in church has been "We Walk by Faith"

We walk by faith, and not by sight;
no gracious words we hear from him
who spoke as none e'er spoke;
but we believe him near.

We may not touch his hands and side,
nor follow where he trod;
but in his promise we rejoice;
and cry, "My Lord and God!"

Help then, O Lord, our unbelief;
and may our faith abound,
to call on you when you are near,
and seek where you are found:

that, when our life of faith is done,
in realms of clearer light
we may behold you as you are,
with full and endless sight.

Words: Henry Alford (1810-1871), alt

Music: St. Botolph 

While I mainly think about it with my spiritual life, but at some points, I feel that I need to apply it to all aspects, or rather a specific aspect at that point.

Obsidian seems to go through "series" of medical appointments, then there will be a lull.  He just finished, for the most part, the series again.  Genetics, endocrinology, second opinion endocrinology, neurology, and school system assessment.  Neurology is recommending a second opinion for genetics and he has to go through a full assessment by the schools, but other than that he is done until the middle of the summer.  His MRI and all of his bloodwork is normal (minus the IGF-1 but even that it is ONLY that is perplexing).  Which is good, but does not offer a reason to why.  Or lead us to what we should do.

The bottom line of all of the appointments is: no one is sure why he is so small, has his gross motor delays, or his other "issues" are there.  For the most part, everyone agrees that is all related.  Somehow.  But no one knows how.  All feel it is most likely genetically based.  Growth hormone therapy might or might not help him grow more.  Depending on who you ask, the odds are not even 50/50 that it will help.

Nothing that was discussed was news or surprising.  Well, apart from some idiot screener for the school system that said Obsidian had no delays including gross motor which is just idiotic (I can not accept this and demand a full evaluation, which is the plan).  I'll not further digress.

As I think about the search for the cause of Obsidian's problems, I think there needs to be a point that we stop so actively searching.  At some point, we need to start "walking by faith", moving forward without true understanding.  With the knowledge, and hopefully acceptance, that we might not ever understand during this life the reasons.  I'm getting very close to that point.  We have consulted or go to experts in many fields, specialist that are known worldwide for their knowledge.  It is not that we can't revisit it when medical knowledge has advanced more.  But I'm coming more and more to the conclusion, with current medical knowledge, there is no "answer" to the underlying reason of Obsidian's medical issues.  While the lyrics don't exactly point to the issue, the general idea or point is what I think I need to be listening to.  I will continue to walk, but accept I might not understand, that understanding as I would like it might not be in my immediate future.

Thankful Thursday

• Turbo Tax.  It makes doing taxes so much easier.  (Yes, I know there are free online ways of doing it, but I'm a creature of habit for some things)
• The majority of this round of Obsidian's doctors appointments are done.  One last second opinion, and then it won't start again until this summer.
• Obsidian's had an easy adjustment to GH injections.  He whimpers while it is happening, but it doesn't start before and as soon as the needle is out, he is zipping his jammies up and running off.
• How pretty the world is after an ice storm.  It is the only redeeming quality.  Sometimes it is so beautiful it almost makes the storm worth it.  Almost.
• In 1-2 weeks, recycling should get easier.  Our city will now take cardboard, I won't have to sort the types of recyclables, and I can just toss them in a big bin instead of putting them in clear blue bags.
• The perks of both Jet and I having a common employer (one of them). And sometimes being in the same building, but different employers on the days we are in the same building.  How is that for confusing?  If we are working on the same day in the same building, we are working for different employers, but we do both work for the same employer (but then each have a different job that is for different employers)
• Jet and I both having some level of flexibility in our jobs that one of us can come in later than the other or leave earlier to match the schedule of the kids, and we can even change what we are doing part way through the day.
• That we had a breath of spring.  It was refreshing while it briefly lasted.

Thankful Thursday

• We got a small taste of spring this week.  Last week, the high was around 15 F if it was a warm day.  Yesterday it was 51 F.
• The school psychologist who comes to Pyrope's class a couple times a month said he had a really good day when she saw him this week.
• Wii fitness games.  Getting to the rec center as much as I need to doesn't happen.  I get bored with DVDs.  I will do Wii fitness games (I have a couple of different ones), the competitive nature helps me along (even if it is just against myself).
• That I'm pretty much a person that can roll with the punches.  It takes quite a bit to really get me frazzled.  This was particularly useful this week at work
• Finding a couple of books that I have really enjoyed.  It makes me want a No.ok or Kin.dle or something.  Our library still doesn't have a huge selection of eBooks, and I really am not a "buy books" kind of person, definitely a library gal.
• Copies medical records of Obsidian's made it from where they are to where they needed to go.  One on the first try, one on just the second (which is really amazing that that particular one only took 2 requests)
• That beef slow cooked with dill pickles really does come out good (I discarded the pickles, cut up the roast, put barbecue sauce on it, stuck it back in the cooker, then it made some mean sandwiches).  Particularly grateful it turned out well because I did it for the first time on a night we had guests over for dinner (I figure, there is always pizza if it was a colossal fail, but everyone liked it)
• Spell check.  I'm a horrible speller, and if I didn't have it, my writing would not be nearly what it is.  First off I would purposely use smaller words versus the ones I really want to use.  Second, I would still have lots of spelling mistakes.

So it begins

Sunday night Jet was talking to his mom.  In the past week, several of her teeth have crumbled.  I'm afraid this is the beginning of a long series of medical complications.  I pray I'm wrong, that this is isolated.  And unrelated.

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.

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

Wordless Wednesday

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.

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.

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.

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).

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. 

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.

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...

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).