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...

Swimming lessons

Swimming lessons have been part of my life for as long as I can remember.  My dad was not allowed to swim until he was in high school.  He learned how to swim at that point but he never could do it well.  My mom learned to swim at a young age and grew up with a pool in her backyard.  Her mother never learned how to swim and was very fearful of water (she did learn how to put her face in, and as a way for her kids to be able to take swimming lessons, my grandmother taught swimming lessons for years... however she only taught the lowest level where the goal was to be comfortable putting your face in the water... my grandmother had the reputation of being the best teacher for that level because of her patience.  When the kids she taught found out years later that she couldn't swim and was in fact afraid of doing the very thing she taught so well, they were universally amazed).  As a consequence of my dad and my maternal grandmother, I was enrolled in swimming lessons from the time I turned 1 year old until I could pass a certain level.  I kept up with swimming lessons even after that point.  By the time I was 13, I was teaching (at first it was just the babies 1:1, by 14 I had normal "level" classes).  I taught various swim classes from that point until shortly after graduating from college.

When Pyrope was a baby, we started doing Parent and Tot classes (for the most part the classes that used to exist for babies without a parent are now gone).  When he was 3, he was moved up to "Preschool" classes (no parents go in for these).  Obsidian was following the same pattern.  This fall when I went to sign up Pyrope for his preschool class, I noticed there was no longer an age requirement.  So I asked about signing up Obsidian for the same class.  I was told it was fine if he was comfortable in the water with a stranger and could wait his turn.  He can do both (he can't do 30 minutes of lessons because he gets too cold, but that is a problem we have with the parent and tot one as well).  He got signed up.  I was sad on the first day of class the normal teacher was not there.  The substitute was okay, but didn't really push Pyrope (or Obsidian but he needs less pushing and I'm less concerned about him learning the skills as quickly).  Obsidian did fine.  He waited his turn, he got in the pool, he tried, and he didn't cry.  A 5 year in the class was fearful but listened, tried, and didn't cry.  One of the 3 year olds refused (for the whole 8 weeks) to get in the water at all.  The other 3 year old kept running around the deck instead of sitting and waiting his turn.  The 2nd week, same thing.  Week 3, the normal teacher was back, took 1 look at Obsidian and said he couldn't be in the class because he was too small and wouldn't listen.  I said he had been fine the first 2 lessons.  She said no and refused to let him come with her.  With that, substitute teacher walked in and said the center had asked her to come in for the lessons so the class could be split (typically they limit the class to 4, and there were 5).  She took the 3 year old who wouldn't go near the water and Obsidian.  She was wonderful with Obsidian.  He learned so much.  Everyone from me, to his doctor, to his physical therapist started to notice him make significant gains (it could be coincidence, but I think it was related to what he was learning to do in the water).  At the end of the session, main teacher said that next session Obsidian would have to be in the Parent and Tot class (the class requirements once again have age included).  Are you kidding me?  No.  Parent and Tot they walk around in the water, sign song, and if the class is "good" try kicking sitting on the edge and being encouraged to put their face in.  Obsidian was working on holding onto the wall and kicking, climbing out of the water by himself, bobs, alternating arm movements, and the "older" skills.  The only person above the main teacher is the aquatic director.  So I went in and appealed to her.  She agreed to have Obsidian in the preschool class again as long as I signed up for a time that the main teacher wasn't teaching it.  Fine.  Guess what.  Obsidian did fine (except getting cold after 20 minutes, but really that is an issue of the water temperature, air temperature, and his lack of body mass).  Unfortunately, the teachers aren't nearly as good (they are all high school students, where as the main teacher taught some of my friends how to swim and the one who wound up teaching Obsidian is in her 20's).  I would love to get Pyrope back in main teacher's class.  Obsidian however was not exactly nice to her after he heard her saying he was too small (as in he would screech at her "I big.  I swim." then spit at her... um, kid that is not really helping your case).  I wish she would have looked at Obsidian for who he is and what he can do instead of his size (and to a lesser extent his age, if he had been a big 2 year old, I doubt she would have asked his age).  They used to do private lessons, but stopped them.  I would be willing to do that with Obsidian (I do understand he is young but at the same time skill wise, socially, and cognitively he does not fit into the baby group).  I'm going to see how the remaining lessons go for Pyrope, and if he is learning anything (which the first lesson he didn't from the high schoolers) we will stay with what we have.  If not, I'm back to the good fight.

Brighter

Obsidian was "graduated" to physical therapy (PT) once a month at his last session instead of once a week.  He has made great gains over the past 2 months he has been in PT again.  The first time he was in PT, he made gains, but not nearly as rapidly as this time.  The first time (almost exactly a year before), he was less than cooperative.  He would scream and refuse to work, and never worked when I was in the room or knew I was looking.  This time was an entirely different experience.  At times he has to be coaxed to do things, but for the most part he is cooperative.  He enjoys PT for the most part.  In some ways, I think he was just ready to make significant gains, in other ways I think he was just more with the program.  The only thing he really refused to do was to ride the smallest tricycle, the one that he rides there he has to sit on the crossbar or his feet can't reach the pedal.  Obsidian has my gift of stubbornness, I just hope he learns to control it, not let it control him.  It took me a long time to learn that, and I still have to work on it.  The first time he stopped going to PT because our insurance would not cover it any more.  I was not happy or comfortable with it being stopped.  This time, I am comfortable and ready to have him cut back.  I would even be a lot more okay with it being stopped if needed.  He has reached most of the goals that were set, and is well on his way to reaching the others.  Now, he is no longer deep in the "moderately" delayed gross motor, to more of "mild" gross motor delay. 

As I was driving home from PT, the colors on all of the trees seemed brighter.  I seemed lighter.  I still have hope that Obsidian's gross motor delays and possibly even his growth will be come interesting chapters in his past, but something in his past that he has "outgrown".  I am becoming even more hopeful that even if they are ongoing issues for his entire life, he will find a way to integrate them into his life so they do not have a significant negative impact.  Small steps.  For now, I'll take my more brightly colored trees.

What now?

Pyrope has always been behind with speech.  He started cooing late, waving, saying words, combining words, exc.  It has been a concern of mine since before he was a year old.  I work with him on it all of the time, some more formal ways than others.  I've had him tested at various points to see if he qualifies for speech therapy.  Each time I get the same story, yes he has delays, but no he doesn't qualify because he is not delayed enough.  Bring him back again if it continues to be an issue.  It continues to be an issue, and getting to be a larger one.  Most recently, I took him to a private speech therapist (ST).  He was by far the most empathetic of all of the evaluators.  However, he works in the medical model, so it paid mainly by insurance.  Pyrope has some higher skills that pull up his standard scores a lot (not all the way to normal, but high enough that he does not qualify).  However, he still is missing some basic lower level skills, that is making it very difficult for him to function and gain higher skills.  Such as, if you ask him if someone is hungry what do you do?  He will answer you get a bowl, get a spoon, get cereal, get milk, and pour them in a bowl.  Then what do you do?  He can't tell you eat.  If you ask what do you use a towel for, he will say after a bath, when you are wet, keep it in the closet, put it in the laundry, but he can't tell you that you use it to dry off.  Technically, the whole list of things is a skill that should come later than the basic answer of "eat" or "dry off".  But he can't do the basic component of it.  So he gets points for the higher skill but not the lower.  This is really becoming more and more of an issue.  If he falls and huts his knee, he will go sit in a corner, not come ask for help.  If he is asked to go get help, he will tell the person something that is related, but not that they need to come help.  As he is starting to spend more time in school this year, and if don't homeschool him next year he will really be spending a lot of time in a larger group, I worry about his safety.  If he is sick, he doesn't tell you.  If he is hurt, he doesn't tell you.  Someone has to notice then say something.  Then he typically just cries.  I worry about if he gets really hurt.  If the teacher does not directly observe it happening (or the after effects) or a classmate doesn't say anything, he won't.  Or maybe he can't.  I don't know how to help him get past this.  I don't know how I can send him into a class with 24 other 5 year olds and hope for the best knowing he can't express those needs.  Some days he can't even tell you he has to go to the bathroom, he will just start to cry, then pee himself.  Other days he can say something.  Other days he will just go in on his own.  I'm so frustrated with the idea of I know there is a problem.  I know there are professionals who can help him and me get past this problem.  But since the rules say he doesn't qualify, then I can't get him any help.  Even though everyone professional I talk to say there is something very odd about his speech, and how he is picking it up.  And that it is very rare for a kid to have a skill set like Pyrope has (higher level skills in the building blocks that should be needed to get those skills are missing... in a couple of different areas).  I'm tired of having the "rare" kid.  Between Pyrope and Obsidian, some of the words I dread the most are "I've never/I very rare see this happen."  Yeah.  Welcome to my life.  The worst part is almost always the person tells me they don't know what to do next.  Great.  So I'm left with what do I do now?  I'm comfortable with the preschool Pyrope is in, there is 1:8 ratio with the kids.  Next year unless he has made some leaps, I don't know.  I never really intended on homeschooling, but at this point am seriously looking into it.  Until I have the confidence that Pyrope can ask for needed help, I don't know if I can send him.  I don't know if I should send him to a bricks and motor school.

Dear Lord

God, grant me the...

Serenity to accept things I cannot change,

Courage to change the things I can, and the

Wisdom to know the difference

Patience for the things that take time

Appreciation for all that I have, and

Tolerance for those with different struggles

Freedom to live beyond the limitations of my past ways, the

Ability to feel your love for us and our love for each other and the

Strength to get up and try again even when we feel it is hopeless.

I pray for discernment for all decisions with my kids, but particularly ones like this.

Benefit vs risk

Obsidian had his dilated eye exam.  To put it mildly, he hated the blurriness that you get when your eyes are dilated.  He didn't complain too much when getting the drops and calmed down right away but the fury when his eyes started to dilate.  Unfortunately, it is really hard to explain what is happening to a 2 year old.

The good news is that he doesn't appear to be near or far sighted and all of the structures in his eyes that you can see appear healthy, including his optic nerve.  I expected this to be what was seen.  However it doesn't really help with deciding what the next step will be for trying to figure out why he has the issues he does.  Neither Jet or I am really that comfortable with having him sedated so a MRI can be done unless it is absolutely necessary.  Part of the question is, what are the potential benefits from having the MRI.  The MRI might or might not lead to a diagnosis.  The two things that the neurologist and geneticist would be mostly be looking for is the structure of the pituitary gland and signs of a mitochondrial disease.  Unless it is a cancerous tumor of the pituitary (which is very very unlikely), there is nothing they can do treatment wise for either problems with the pituitary or a mitochondrial disease.  Pituitary gland problems, they treat the hormone that is not being produced in correct quantities, and Obsidian has already been tested for those and they are either in normal range or he is too young to start treating the potential growth hormone issue.  For mitochondrial disease, they just treat the symptoms.  For the most part we are already doing that.  He eats frequent meals, in whatever amount he wants to eat.  We try not to expose him to too much heat as he doesn't tolerate it well.  So while we might get a diagnosis (which is a huge might), there is no treatment for what they are looking for (there is always the chance they find something they really aren't looking for, but I'm not even going down that road).  So Obsidian would be exposed to the risk of sedation without any real benefit treatment wise to him.  If he still needs a diagnosis when he is older and bigger, we could do the MRI then.

So now we just have to tell the doctors, thanks, but not now.

Evolving changes

I took Pyrope and Obsidian to a playground that is awesome, but it is a bit of a drive so we don't go often.  We had not been there in 3 months.  We went with friends two girls (one is similar age to Pyrope, the other to Obsidian).  While I was there, I was struck by how much my kids have grown.  Pyrope was running around with his friend and needed just loose supervision.  They were playing some very involved role playing games and just running and climbing over everything.  Even a year ago at this park I was having to help Pyrope climb on some of the equipment.  He wasn't nearly as verbal.  And how he plays with friends has deepen.  Before it was more concrete play, this time they were happily inhabiting a complex world that they created.  Not that it was all love of course, there were the typical "I want to do this, not what you want to do." and "I want to do what you are doing so get off." 

Obsidian's changes were more dramatic and noticeable to everyone.  On the last trip, he couldn't climb on most of the equipment, even in the baby part.  This time he was pulling himself up, climbing down off, exploring, sliding, with minimal adult help.  He was actually running, something that has really started to come together in the last couple of weeks.  The last trip was notable for the tear of frustration followed by temper tantrums and meltdowns.  Obsidian was still the first kid exhausted, but he made it a lot longer than he did earlier this summer.  A lot longer.  I continue to be worried and frustrated with his gross motor skills, but seeing him play at the playground like this make me realize his is making gains.  Pretty significant gains.  Many people (doctors and therapists included) blame a lot of his gross motor delays on his size.  However, he is only 1/8 of an inch taller than our last trip (trust me, the child is measured often enough I know).  I don't think that 1/8" explains all of the things he can now do.  Maybe some, but I wouldn't even say the majority, and in some ways I suspect none.  He has come a long way in a relatively short amount of time.

Thinking about how little I had realized Pyrope had grown up and how Obsidian had been making leaps gross motor wise, I got to thinking about how many changes happen right in front of us without us realizing.  We are so close, that all of the tiny changes that happen don't really register until we are suddenly looking at it thinking "When did this happen?" or "How did I/we get here?"  By not missing a thing, I sometimes loose sight of what the current big picture is.  It has me thinking about changes in my marriage, in my relationships with friends, in my relationships with family, in my "work self", where am I?  Is it where I was?  Is it where I want to be?

6-9

The weather has started getting cooler here.  So I got out pants for the boys.  The pants that fit Pyrope well in the spring are floods.  The ones that were long, barely fit for now.  They will be too short come Christmas time if not sooner I'm guessing.  No big surprise.  I then went to put on Obsidian's 6-9 months pants from the spring.  Hoping that they would be too small, not even being floods, but just too small.  I was day dreaming about having to get out the tubs of 12 month clothes (which I will have to anyhow because that is the size shirt he is wearing).  Um, no.  The 6-9 month pants fit well.  With more room to grow in than Pyrope has in the pants that were too big for in the spring.  I was so sad.  Obsidian has been making so many gains lately.  He is 20 lbs (and amazingly has never dipped below that point since reaching it, knock on wood).  He has started pedaling a bike (with some help, but at the beginning of the summer, he literally didn't have the ability to sit on it without falling off).  He has even taken a couple steps down stairs without holding on to anything (with someone right in front of him).  There have been a few times that he has walked down the stairs holding the rail without anyone around.  I thought, or I was hoping, that some corner had been turned and he was catching up.  All of the worries and concerns I've had would be memories.  A chapter in his and my life that I would look back on and think "Hmm, I wonder what was happening then" as a curiosity that had resolved itself and no longer needed my attention or concern.  At least for now, this chapter is still open.

The big 2-0

Obsidian finally hit the magical weight of 20 lbs*.  It took him 6 months, literally, to gain this last pound.  For a child who is 25.5 months old, 20 lbs is still not much.  He is the weight of your average 8 month old, and height of your average 17 month old.  The reality of it is, there is nothing special about 20 lbs in particular.  Since Jet and I believe in rear facing car seats as long as possible because it is the safest way to travel, Obsidian being 20 lbs doesn't mean anything in particular.  Even giving a larger dose of ibuprofen happens at 22 lbs.  Nor am I convinced that Obsidian won't dip below 20 lbs again, most of the time when he gains some weight, he then loses a little.  Also because of his 15q11.2 microdeletion, I worry about him suddenly becoming morbidly obese between the ages of 2-4.  So while I want him to gain weight (and height), I don't want him gaining weight too quickly at this point.  Then he will be looking at strict calorie restrictions and how to not develop an eating disorder because it will be the only way to prevent morbid obesity at a young age.  That would be such a cruel twist of fate.  I keep coming across doctors (from various disciplines) that want to try to get more calories in him.  Since he eats a lot, and I already use many strategies to maximize the calories that he does eat, the suggestion of an appetite stimulant comes up.  At this point I will give him whatever food he requests (within reason), but I just don't have a good feeling about giving him an appetite stimulant.  This is the child who can eat 3 slices of pizza and a chocolate milk, and then be asking for more food 2 hours later.


***Note: 20 lbs is 9 kg