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

Pegasus

Recently Pyrope and his best friend, A, have decided that her mother's minivan is really a magical pegasus.  After everyone gets in and her mom starts the car, it turns into a pegasus and flies-- not drives.  While they are going to their destination, a running story or commentary goes on about it. 

Since this has started, when I drive my car, Pyrope and Obsidian tell me how they wish I had a magical pegasus as a car.  I ask them why I can't.  I've been told you can't pretend the same thing.  That's not fun!  So my car has become a digger, Lightnigh McQ***n, and various other things, with story lines to go along with it.  At the end of each trip, I get told that it is not "really right" and that they will have to "try again to find the perfect pretend for my car".  Okay, you do that.  It is easier to take some days than the 8,000 times I sing the ABC song, Twinkle Twinkle Little Star, and 5 Little Ducks (the current favorites, but actually these songs rotate on a regular basis, so it isn't that bad.  They have a large repertoire of songs, and favorites change regularly).

We were talking with someone whose son is 2 years older than Pyrope.  He was saying how he can't go anywhere in the car without his son having to play on his iPh**e or some sort of hand held game.  I said that both of our kids lose interest, and we wind up talking about pegasi (is that the plural of pegasus?), other such stories, or signing songs.  Even on long trips, portable DVD players and video games don't entertain nearly as long.  He said "They know what a pegasus is?"  Um, yeah.  They also like to be a cyclops around the house.  And dragons.  And knights.  And crusaders.  Please don't bring up Musketeers unless you want to see random objects turned into swords and then the moves that go with it (and pretty please don't bring it up if there is not the space to do the moves).

Some days, I do get tired of singing.  And making up the stories.  Or even listening to the stories.  My music or silence in the car I sometimes long for.  But then I think of video games that would get me that peace.  I'll take my songs and stories.

Grow Up

This past weekend, my SIL and her two girls came for a long weekend (coming on Friday and leaving on Tuesday).  I never look forward to the visits.  I don't particularly enjoy her or her kids company.  This time she managed to outdo herself.

My MIL has cancer.  Stage III.  It didn't respond to the first set of chemo drugs.  The second set is taking its toll on her body, and has yet to show any real signs of helping with the cancer.

She is very hard to get gifts for.  Very hard.  She doesn't collect anything.  She doesn't go out to eat.  She doesn't go out much in general.  She doesn't like gadgets or new things in general.  She does love her grandchildren.  And her children.  She loves getting new pictures of her grandkids.  Particularly when she gets new professional pictures of them, we hear about it for a long time.

So I thought to myself, while SIL is here, we will go and get family pictures.  We being Jet, my kids, her and her kids (SIL husband was not coming, and frankly I don't think my MIL cares one way or the other about me.  And it would look silly with me but not SIL husband).  Jet told her the plan.  The girls brought complimenting dresses.  I got outfits for the boys (new ones, including shoes.... if I'm going to do something like this, I want to do it well).  Once here, I bring up (again) about her being in the picture.  She says she can't because she doesn't have any make-up.  I offer to go and buy some.  She says that would be silly.  I say it would be silly to not get her picture taken for her mom.  We continue to go back and forth.  Her girls taking my side of the argument.  Jet not commenting.  SIL says to Jet at one point that she knows he really doesn't want to be in the picture so why isn't he arguing with me.  He quietly observes that my reasoning for it is that their ma would love the pictures, and that there is no way he can come up with a reasonable counter argument to that.  The argument continues the next morning.  And at the studio.  Finially, the moment comes it is now or never.  I say to SIL, if your ma tells you she would really like you to do this, would you?  She said yes, thinking that I had no way to do this.  I pull out my cell phone and hand it to Jet to dial.  He gets the evil eye from his sister.  I glare.  He looks at her, he looks at me.  He dialed.  I talk to my very confused MIL.  She immediately said she would love a picture, make up or not, and kept questioning me why I would think that she would need/want SIL to have make up.  I said I didn't, but to please tell SIL that she would like the picture taken.  So SIL gets the phone, then begrudgingly gets in the picture.  She was pouting for a lack of a better word in the pictures. 

The rest of the weekend, she did things (I feel) to try to provoke or get even with me.  Opening windows when the air conditioner was on.  Not closing the door when she came inside/went outside (hello, air conditioning, mosquitoes!).  Not showing up one night for dinner (or calling to let us know she wasn't coming).  Whatever.  Grow up.  I refused to be provoked.  I kept closing windows and doors.  We waited a 1/2 hour from when we normally eat, then ate without them.  Once again.  Grow up.

So we drove up to visit my MIL.  It is a 4 hour trip each way (well sometimes it is less, construction was heavy to put it mildly).  We got there and pulled out the pictures for my MIL to choose what she wanted to keep (along with the ones I had framed).  She was so excited.  And confused.  She didn't understand that I was talking about a professional picture.  She commented that she never had a professional picture taken of the two of her kids but had always wanted one (I had planned on a picture of just the two of them, but with the torture of the one group shot, I was not up for further argument).  She went around her apartment rearranging her picture several times to come up with the perfect arrangement.  I'm sure it has been rearranged multiple times since then.  All of her grandkids together in a professional picture (actually a couple different poses of all of them together, then each individually, then the siblings).  And then the one with her kids in it as well.  She then started to question me if SIL knew about this prior to her trip.  I said yes.  She then questioned me why SIL had not come prepared for it (meaning make up and a coordinating top, Jet choose a top to match the kids, he figured that he would be in the pictures).  Or gone out and got the make up and/or top after she got here.  I shrugged.

My MIL happiness over the pictures made it worth my trouble.  I don't understand what made my SIL fight it.  Or be so passive aggressive the rest of the trip.  The pictures weren't about her.  In all honesty, if she didn't like them or want to see them, then don't take any or give any out.  Just give a copy to your mom.  Grow up.  It really was not any stretch of the imagination on my part that my MIL would love it.  Why couldn't SIL just see it as a gift even if she didn't like it?  Jet certainly does not enjoy taking family pictures but didn't say anything after I put out my reasoning.  It gets down to: Grow up.