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

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.

Peer Lessons

So far, GHT has given Obsidian more energy.  He naps less and he plays longer without resting.  This is a good thing but it is causing some issues.  Lessons that Pyrope learned gradually, Obsidian has not.  And now they must be learned.

I have always been very conscientious about socializing my kids.  I have purposely, regularly put them in various situations.  Where they are mainly with adults my age, where they are with adults my mom's age, where they are with "older" adults, where they are with grade school kids, kids their own age, and kids younger than they are.  Each of these situations there are different social rules that need to be followed.  The interactions are different.  In many ways, both of my kids have had the most difficulty learning how to appropriately play with children their own age.  With older people, you listen to what they say.  With kids younger, you can boss them around some, but you have to be gentle and let the "baby" get away with things that they themselves know they can not.  The interaction with peers is complicated.  In controlled situations (such as classes where you sit and wait your turn and do as the group does) are not that difficult either.  It is the one on one, small groups, and larger groups of peers  that are difficult, particularly when there are not adults/older kids interacting with the kids.  These type of situations are also the most difficult for me to consistently orchestrate.  But I have.

One place that I have found is "Preschool Gym".  Two times a week, a rec center has an "open gym" for kids under the age of 5.  There are mats, tumbleforms to climb over, balls, scooter boards, and parachutes laying in the room.  There is no formal "lead activities".  Kids are just left to play.  Sometimes parents are playing with the kids.  Sometimes the kids are just playing with the adults standing around the edges making sure that no one gets hurt.  Typically there are kids around my kids ages.  Disagreements regularly break out over who has what, how to play whatever they are doing, whose turn it is, exc.  The culture at this particular place is to let the kids try to work the minor stuff out on their own (which is a breath of fresh air for me).  At this point, Pyrope runs around with the "older" kids and they need very little intervention.  They talk things out, apologize to each other for accidents, and in general do their own thing.  Kids Obsidian's age, not so much.  There is many tears, along with yelling, kicking, punching, exc.  Up until this week, if Obsidian had an issue, he would cry, walk over to me, then have me hold him or literally sit on my feet for the remainder of the gym time.  Typically, he would only play the first 20 minutes or so, and the rest of the hour to 2 hours, he would be in my arms or only very briefly play with me with a lot of encouragement.  Not so anymore.  He played the whole hour we were there.  However, this lead him to standing and crying and yelling in the middle of the gym multiple times (and several times he would have hit another child had I not grabbed his arm first) when there was a disagreement.  Turn taking was infinitely hard.  It was hard for Pyrope, but he had some practice and experience at this point.  Obsidian, if he didn't get what he wanted right then, he just stopped playing altogether, and for the most part didn't rejoin in.  I wonder if time is just dulling my memory at how many times at this point I had to redirect Pyrope to play with something else while waiting for his turn, or asking to play together, or some other appropriate way to deal with the situation at Obsidian's age.  Gym time was trying.  I felt like I had this huge brat on my hands.  It only makes my resolve to keep going, if not try to go more so I can keep trying to teach Obsidian appropriate ways to interact with peers.  Because of his size, many times peers even without prompting of adults, give Obsidian his way because he is seen as a "baby".  Obsidian is used to this.  And likes this.  Before he tired so quickly, other kids didn't care, as he quickly stopped.  Not so much any more.

I'm glad he is starting to have these issues now, not when he is kindergarten.  But still, I'm not enjoying the amount of time I'm having to instruct him on acceptable behavior.

Before I had kids, I always said I was fine with having a child with a disability but I was not fine with having a disabled brat.  If anything, I would want a child of mine with a disability to have better manners.  As a student, I worked with a guy who said the most important skill we can teach a person with a disability is something that makes them lovable, more so than feeding themselves, dressing themselves, toileting, or anything else.  That if they were loved by their caregivers/peers/people around them in general, that those people would be much more attentive and willing to help, even if they needed to do more, if the person was "lovable" or had something that attracted them.  At first I didn't get it, but I thought about it.  And I looked at others.  And I thought some more.  Over a period of years, I decided there was a basic truth to this.  And that anyone, with a disability or not, is more likely to get helped by others if they are liked.  As I was thinking about how I could pass this on to my children, the two things I came up with were teaching them "good manners" and empathy.  These are not easy skills to teach, and mainly need to be taught through example and expectation.  Which goes back to my efforts in socializing.  And why I'll be at "Preschool Gym" as often as I possibly can in the near future.

Wordless Wednesday

Ready or not -- Updated

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.