Thankful Thursday

Today I got to thinking why I do "Thankful Thursdays".  For a good portion of my later teenage years on, I have made a conscious effort to see what there is to be thankful for.  Partly to see the good God has put around me, but mainly because I feel better when I'm seeing something to be thankful for.  The benefits are exponentially more when the exercise is most difficult to complete.

I went into work today for a couple of hours.  I was in a bad mood for multiple reasons by the time I walked into my department.  My department as a whole was in a crabby mood, for a couple specific reasons.  I could feel myself getting to be in a worse and worse mood.  However, when I was walking to treat a patient, I did my normal mental prep work.  This includes if I'm having a bad day and I'm crabby, to try to turn it off at least enough that my patient(s) won't see it.  I started listing things that I'm thankful for, the first one or two came slowly and were excessively difficult to think up.  I did come up with them.  Less than a minute or two later, I'm stepping off the elevator at my destination and I've decided that I really do feel better in general now at this point and I'm making much better decisions.  Among other things prior to this, I was thinking of all of the ways I could get at the person who I share a desk with because she wouldn't let my sunglasses sit on the desk because they were in the way (keeping in mind that she has so much stuff on our desk that generally I can't write at it because there is no surface to write on and too much of her personal junk sitting in our chair I have no where to sit including when she is not even there); I was now thinking that her behavior was annoying, but really doing something that would instigate an all out fight is probably not worth it over a pair of sunglasses...  So here is my list for this Thankful Thursday

1. The weather is finally cooler.  I'm not a huge fan of heat, my favorite weather involves wearing sweatshirts, and we are just entering into it.
2. The fall activities have officially started.  This past weekend we went to a pig roast and we went on a hayride and had a campfire while we were there.
3. Listening to Obsidian talk.  Pyrope was/is not much of a talker.  Obsidian is.  Since I'm not used to listening to a very small person's views of everything, it is even more amusing listening to them.
4. Lazy Sunday afternoons.  This past one I spent listening to Pyrope playing and laughing with my cousin (who is 13) while Obsidian was taking a nap on my uncle's chest.  It was a very laid back, quiet visit.
5. Seeing the leaves on the trees just starting to change color.  It gets back to I love the fall (but I love this enough that it is its own specific item).
6. My sister got me drinking a new type of tea.  I don't drink coffee but I love a good hot beverage in the fall, winter, and spring.  I hate having to put sugar in things, this tea I can drink without sugar.  It is almost like drinking a liquid cinnamon red hot candy heart.  Except there is no sugar involved, but it still tastes sweet.  It comes in caffeinated and caffeine free varieties.  I did find it comes in different flavors as well although right now I have no interest in expanding into a different flavor.  I love this tea.
7. I found where I can buy above tea locally to me (my other options were having my sister buy me some or buying it off of Amazon, both fine options but ones that require forethought when I'm running low).  I didn't even have to go to a lot of different stores to figure it out, a simple status change on Facebook, and I then found out where I could buy my tea.  Yum.

Wordless Wednesday

Breath taking

As a senior in college, I went on a canoeing trip for spring break.  It was on the Green River, in a fairly remote region.  It was a 6 day trip, and after the first day or so, if we needed help, either someone would have to go to our destination, we would have to paddle upriver, or would have to hike up river along the banks.  Knowing my dad and how he worried, particularly with my diabetes in mind, I neglected to tell him of my spring break trip.  I was well prepared, and carried supplies that my trip-mates could help me in a large number of situations.  I took all of the precautions I could, but I decided that it was a risk I wanted to take to go on the trip.  It was a great trip, I'm glad I did it.  My dad (and family in general) never found out about it until my husband was showing my dad pictures, and pulled out that album and to look at.  My dad shook his head, but didn't say much (my dad finding out about the trip is chronologically after he had cancer).

A little over 5 years after my canoeing trip, my dad was diagnosed with a pretty deadly form of cancer.  He made it through a surgery that bought him some extra time.  A consequence of the surgery was he was then diabetic and needed to take insulin.  What his goal was after the surgery was to hike to the bottom of the Grand Canyon again (he had done it once before, maybe a couple years earlier).  Before he was even allowed to drive after the surgery, he was having my sister drive him to the Y so he could walk on the treadmill and exercise so he could take the trip.  That winter he worked out all of the time with that goal in mind.  Early that spring, he was visiting Jet and I (we were living in a different state at the time), and I asked when he was going to hike to the bottom of the Grand Canyon.  His jaw dropped.  He asked me how I knew.  I was slightly confused.  He was leaving the next day for a routine "business trip" (this was the whole story everyone was getting, including my mom).  My dad then elaborated about the details of his business trip.  He was traveling for work, but before the work portion was to start, he was hiking down, spending the night at a camp at the bottom, then hiking back up to the top.  Apparently, many people had been telling him that he either couldn't or shouldn't try.  His oncology doctor and I were the only two people who supported him with this goal.  He asked his endocrinologist how to adjust his insulin for the hike.  She refused to give suggestions of how to do this because she didn't think he should do it.  So he simply made the decision to not tell anyone before the trip.  He was amazed I figured it out (I really didn't connect his business trip with the hike, but I was just asking how he was doing getting to his goal).  Less than a week later, I received a post card from him.  He sent it from the bottom of the canyon, and it started its trip being carried up by mule.  Others got cards as well.  Friendly ones to my mom and each of my siblings.  A thank you one to his oncologist for supporting him, both on his cancer journey and believing that he could do the hike.  And a postcard to his endo that simple read "Ha. Ha. I did it."  My dad was so happy about the trip, and proud of the fact that he hike down and back up 6 months after his surgery.  Jet was once again around when my dad was explaining the postcards he sent when my dad and I were talking about his trip.  Jet dully observed that the apple doesn't fall from the tree (mainly in regards to the "Ha. Ha." card).  3 months after his trip, my dad passed away from the cancer.

It is now 6 years later, and the immediate sharpness of losing my dad has faded, but occasionally things happen when I'm least expecting it that remind me of him.  Sometimes they take my breath away.

Last week, I was reading Post Secret.  The last post card was from an oncology nurse.  She sent in a post card from the Grand Canyon.  A patient of hers that had cancer and her promised each other that whoever got the the Grand Canyon first would send a post card.  The nurse made it there, but the patient had passed away, so she sent the post card to Post Secret.  It took my breath away for a second.  I was sad about missing my dad, and sad that this other person never got to see the Grand Canyon while walking this earth.  I also thought about the "Ha. Ha." to the one doctor and the "Thank you" to the other.  I thought about how deeply as health care professionals we can touch people, and how our patients can touch us.  I dug out my postcard.  I showed it to Obsidian.  He said "Big hole."  I told him that when he is older, we might go there (the closest I've been to the Grand Canyon is the confluence of the Green and Colorado Rivers).  The tree to apple grown into a tree, to the next apple have to connect somehow.

Tonight on Facebook, I saw that friend posted that her mom who had terminal cancer was released from the hospital and that tomorrow she and her two children were going to fly to see her.  2 hours later she posted again, her mom had passed away.  While my friend knew her mom had terminal cancer, she was hoping her mom would still be here in the spring when she is due with her 3rd child.  I missed my dad some more, and wished he could have met my kids.  My due date with Pyrope was exactly the 1 year anniversary of my dad passing away.  One of my dad's last lucid thoughts was that he didn't want the day he died to always be a day to be sad and mope.  I've tried to honor that, and when I found out my due date it took my breath away, but it seemed appropriate.  I've been thinking tonight, maybe I'll try to hike down there with the boys when they are older on the anniversary (I would have to look into what the weather conditions are generally like that time of year).  I've been thinking of the first days after my dad passed away and the sharpness, I would not have been able to take seeing the Post Secret card with the peace that I did in those early days.  I've been thinking about the breath taking moments my friend will have.  And I'm praying for God to carry my friend and her family closely right now.

Wall

I think I've hit a wall.  Hard.  I'm bone tired.  Things have been crazier than normal for a while, but I think things have also just built up to the point I'm exhausted.

I'm tired of not knowing what to do with Pyrope and his issues.  There is something not normal about his communication, and to a lesser degree his interactions with others.  However, I'm not sure how much his social problems being very mild are a case of them being very mild or me "being on my 'A' game" with teaching him social rules since he was tiny.  Since he started preschool and had his private speech evaluation, I've come to grips with the idea that at this point he will not be able to function in a typical classroom without support.  Particularly since meeting with the parent advocate, I've come to terms with the fact that there is very little hope that I will get the school system to give him any support.  I have never wanted to homeschool my children.  With that said, I don't see how I can safely send his to school so I'm beginning to make plans for homeschooling him next year.

Since we have 'officially' stopped looking for a reason Obsidian is so small and delayed gross motor wise, I'm just weary of the questions surrounding his size and delays.  He is who he is, and at this point the benefit of further investigation doesn't outweigh the risk and cost.  I'm just watching, seeing if anything else of concern appears, or if he starts to catch up.

I'm tired of the unorganization in my house.  This is mainly my own fault.  At this point I feel overwhelemed.  I am wishing for a day or more like a few days without anyone around so I can attack it.  I want to get rid of some of the baby stuff that I thought I would use, but then didn't for either boy.  If I didn't yet, I'm not going to, regardless if I have another baby or not.

I'm tired of the 3rd kid question.  Jet feels the subject is close, he just doesn't want it.  I keep coming back to it.  I wish I could move on, but I can't seem to.  I try to ignore it, not talk about it, try not to think about it.  But it always is there.  And always comes back.  I think that I will be finding some peace about "just" having my 2 children.  And I feel extremely blessed to have my two children, and know that many many others are not so lucky.  But that 3rd boy keeps coming to my head.  Each time that another one of my friends or co workers announce an "oops" baby, I'm getting to be more and more bitter.  I want that "oops" to happen to me (but it really wouldn't be an "oops" would it?).  Then I start to think how I would feel if I was infertile, and I feel even more terrible.  Why can't I be happy, or at least be at peace with the family I do have?

I'm tired of the constant battles with medical bills.  I just want to pay the portion I owe and the rest of it go off without a hitch.

I'm tired of coordinating schedules.  Pyrope's school, Jet's four 10 hour days, Obsidian's gymnastics and PT, Pyrope and Obsidian's swimming lessons, the parent and tot events I coordiate, my mom's ability to babysit, the coordination of Jet helping fix various people's cars, my working 2 different jobs in the time I'm not "needed" to do something else.  And then the constant change of who is doing what when, being driven by whom in which vehicle.

I'm just tired.  I want to go sit on a warm (but not too hot) beach.  Or get my house in order.  Or feel like my to do list is shrinking instead of growing.

Thankful Thursday

Despite, or maybe because, there has been so many things happening this week, I've been finding a lot to be thankful for.

1. Jet's willingness to help fix up mechanical things.  For anyone.  He is willing to put in a lot of time, and even more time teaching while he is doing it.
2. Our neighbors to the north.  They don't mind us, I think they might even like us.  There are many reasons that they could not like us.  The kids toys always straying into our yard.  Pyrope riding his bike into their rose bushes.  The constant cars being worked on parked in our driveway which is right next to their patio.  The noise from working on... things.  Jet leaving on his motorcycle at 6 am.  Periodially seeing Pyrope 'watering the grass'.  The list goes on and on.
3. My mom living close enough, being able, willing, and watching the boys when I need help.
4. Obsidian's smiles.  They make up for the stare downs we get into.
5. Despite many near misses, the fact that we have not had any really serious injuries.
6. The fact that although my one job is looking like it is drying up soon, other jobs are always presenting themselves.  It is just a matter of applying and going through the motions.
7. The internet.  It is incredible the amount of information (and misinformation) that is a few searches away.  20 years ago, the amount of time and research to get a fraction of the information was so great.

Wordless Wednesday

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.

Logistics

My life for the past few days has been a logistical nightmare.

I have to back up a little for this to make much sense.  I have 3 brothers (for the sake of simplicity db1, db2, and db3 dear brother 1, 2, and 3; I also have a sister, but she isn't really involved... neither is db3).  The brakes on my mom's car really needed to be changed.  2 weeks ago db1 was supposed to help db2 change them (db1 is 29, db2 is 20 and never had done a brake job by himself so he wanted some help/supervision).  On 4 different occasions, days and times were set up for the two of them to fix the brakes.  Db1 never showed, and only sometimes called to cancel.  The brakes really needed to get done.  Jet had volunteered to help, but Mom and db2 thought db1 should be the one to help as well, it is his mom.  Tuesday on the way home from work, db2 wound up hitting debris from a fatal car accident and his radiator was completely torn up.  Wednesday he drove Mom's car to work and then came over here as the brakes really were done.

Wednesday Obsidian needed to get his stitches out at 8:30.  The company that was putting in our windows were supposed to be here between 8-10 to start.  Jet was home, so this worked out okay.  Pyrope had to be at school at 12:30, and I had to be at work for a meeting at 12:45.  The boys and I had headed over to my mom's house after we picked up Pyrope after Obsidian's appointment.  8 of the 21 windows we were replacing had lead in the surrounding frames, so essentially they couldn't be anywhere near the area that those windows were being worked on (which was 1 window in the living room, 2 in the dining room, 1 in our bedroom, 2 in the boys' bedroom, 1 in a bathroom, and 1 at the top of the stairs... so basically all over the house, for those windows furniture had to be 8 feet away or tarps placed on it).  After feeding the boys lunch at Mom's I left Obsidian there and took Pyrope back home so Jet could take him to school.  I drive into work.  After much difficulty trying to park (they are building a parking garage as well as expanding the building, we were supposed to be assigned to lots, my badge lets me into all lots, but will not let me out of any, and I wasn't allowed into the parking garage as all of the employee spots were full.  So I had to park on the street, which we are not supposed to do either.), I was sitting in my meeting.  My phone rings.  Jet has decided he is going to go help one of his clubs fix a car that was having problems.  So I now must leave work early but it isn't the end of the world. But I really don't have time to pick up Obsidian.  I call my mom, and she agrees to keep Obsidian until db2 come to get her to bring her car to my house so Jet can help him fix her brakes.  (Note: I keep a car seat for both boys at Mom's so if I drop them off there, she can go out if she wants to)  So I pick up Pyrope and bring him home.  Jet, Mom, db2, and Obsidian all get to my house a little after 4.  By 6:45, it is clear that all of the parts that are needed for fixing Mom's car we do not have, and all of the autoparts store can't get the part until Friday.  Mom was going to come sit with my house the next day to let the window people start when I had the boys at speech and physical therapy.  The new plan is that Mom drives my car that night (Jet and I both drive manual transmission cars, Mom knows how to drive them, db2 does not) and takes db2 to his apartment to get clothes, then takes him to her house, so they can wake up and be at my house by 6 so she can watch my kids while I drive db2 to work (Mom doesn't like freeways, and basically refuses to do them at rush hour).  After I get home at 7, I then get Pyrope and Obsidian ready for the day and leave by 8:20.  As I'm waiting for the appointments to start, I get a phone call from Mom.  Window guys have been there and left.  Since we have kids under the age of 6 in the house, they can not replace windows involving lead removal if there are winds over 10 mph.  Yeah.  There were storms all day, definitely winds over 10 mph.  They will be back Friday (the next day) to try again.  They hope to be done between 1-3 pm.  They don't normally work on Saturdays, but agree to finish the job if Friday doesn't work out on Saturday.  So Mom hangs out at my house until I get back to my home, I drive her home.  At lunch time, db2 calls to tell me he convinced a coworker to give him a ride to Mom's house that day and Friday.  Cool.  I still have to drive back to Mom's after a fundraiser at a restaurant, so she has my car so she can drive over to my house the next morning so I can drive db2 to work while she baby sits.  I call dear sister (ds) that lives 1.5 hours away to tell her that I'm not sure when I will be able to get down to visit her.  We were planning on getting there around 3, but I can't leave until windows are done and the car parts are picked up.  On top of this, Mom was going to keep my boys at her house while the lead work was being done at mine, but Fridays are swimming lesson day.  So she was going to drive Jet's car (with the kids) to her house once the window guys get there, then return to my house so I can take them to swimming.  So after I get back from dropping db2 at work.  Jet's car is not there.  And his motorcycle is parked under a window that is being replace.  Yeah.  Call him and find out that he was about to run out of gas with his motorcycle so he brought it back home and took his car.  I point out where he parked his motorcycle.  He says "Oh."  I decide to wait for a neighbor to start to be out in his yard to move the motorcycle.  Now I just wait for window guys.  Jet pulls up in his car, I ask him what he is doing.  The hospital that he was supposed to work at that day didn't have as much work as they thought, so he was done and was going back to his "home" unit, and decided to switch out to the motorcycle on the way.  I am still waiting for the window guys (with my mom and kids in my torn up house).  They don't show.  A little after 10 am, I call to find out.  I'm given some crazy story.  Bottom line, they are not coming that day.  So Jet will be staying at home.  Change plans yet again of who is driving what car where, and it is decided that db2 is bring his broken car to my house instead of db1's house.  Eventually, Pyrope, Obsidian, and I leave by 3 pm for ds.  Jet's day continued to be crazy.  He didn't think he would have a full day of work, but did.  He then went to pick up his muscle car, but the lady next door fell, and the family was having trouble caring for her until the ambulance got there, so Jet helped.  Then the ambulance was blocking the driveway for Jet to take his car home.  Since he had to be at our house the whole next day (the window guys started at 8 am and didn't finish until 4), the guy who was working on the car's wife helped drop the car off at our house on Saturday.  Jet and db2 finished up the brakes on Mom's car (which were in way worse shape than originally though), then rope towed db2's car to our house.  He didn't get to bed until after midnight.  Saturday was a relatively good but very busy day for all.  If all of the car parts for db2 car come in on time, by Wednesday night, I should have a driveway and garage with all fully functioning automobiles.  Which has not happened since mid July.  The logisitics of this last week were just nuts.

Thankful Thursday

This week I have been finding many things that I'm not thankful for.  Some weeks, it is very easy when Pyrope, Obsidian and I say our bedtime prayers to list things I'm thankful of happening in my life.  This week it was really a struggle at times, but at the same time, those are the weeks I really need to remember the good with the bad (or bitter with the sweet as I was told frequently as a child, "Ruby, you can't understand and appreciate the sweet unless you also have the bitter).  So in no particular order, here is what I'm thankful for this week.

1. Friends that have a sense of humor.  I was at a meeting and trying to balance money we collected for some events.  Things were not balancing, we kept trying and it was not coming out (this should have been the last "easy" step, as each event had balanced and now we were just making sure the totals were correct).  I then realized I was literally sitting on an envelope with money in it (I had put it there because it was the first event that was done, and I wanted to remember we had already completed that event).  We laughed.  Others would have been mad at me (as we had just spent the last 10 minutes trying to figure out what was happening).
2. Quite time for me.  Pyrope started preschool and Obsidian naps during the same time.  So I'm as close to "home alone" as I have been in years on a regular basis now.  And I'm loving it.
3. The physical location of my home.  When Jet and I were looking for a house, we wanted it within a mile of a library and at least a convenience store.  We are within a mile of those two, as well as being a 1/4 mile from the K-5 school our kids will most likely go to, slightly over a mile to two different grocery stores, 1.25 miles from Pyrope's preschool, a couple different playgrounds, a bike path, and a very nice park are also all within a mile.  Just as importantly, there are sidewalks that I can safely bike with the kids to do these.  So many people I know live where they are not within a reasonable distance or there is no safe way to travel that distance (although this was a very conscious decision of our as there were MANY houses we eliminated solely for the reason they were either too far from "things" or there was no sidewalks/safe way to access those places if you were not in a car).
4. Access to good medical care.  Obsidian's cut through his lip was a pain to deal with but if it was 100 years ago, neither the ability to stitch him up so he wouldn't have problems with closing his lips for the rest of his life or the antibiotics to protect him from infections while he was healing existed as they do now.  While this was an annoyance for a brief amount of time, it will soon be a fading memory, or just a story to share.  In the not that distance past, it could have been a life threatening or debilitating event.  To this day, in other parts of the world, this would be much more serious than it is.
5. The new Radian car seats I just got.  Car seat safety is a soap box of mine, so good car seats is always something I'm thinking about.  I also drive a smaller sedan, and really don't want to get a mini van.  I don't need the space for the most part.  I hate using more gas to move a vehicle the same distance just because it is bigger when I don't need bigger.  However, I'm starting to car pool more, so I've been needing to put 3 kids across the back seat.  And 3 car seats were not fitting across with my old ones.  I can do it with Radians.  As an added bonus, both Pyrope and Obsidian like the Radians.
6. My MIL's colonoscopy came back clean.  This is the first time since the first cancer diagnosis came that a new medical problem has not come up during a screening or procedure.
7. There were 3 days Pyrope and Obsidian slept in until 8 am.  This never happens.  I get excited when they sleep until 7.  Both of them sleeping until 8, on the same days, multiple times in one weeks is unheard of.  I have never been huge on sleeping in, but it has felt wonderful.

Wordless Wednesday

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.

Bumps, bangs, bruises, and fat lips

Since Obsidian is moving more, he is getting the associated bumps, bangs, bruises, cuts, and fat lips.  Pyrope's injury that kept occurring was black eyes.  I think by the time he turned 3, he had had 5 black eyes.  Obsidian's thing seems to be fat lips.  We were at a relative's house and he fell while climbing off a chair and split open his lip.  That really bled.  Everywhere.  It was over a week before his lip was completed healed.  His lip had only been completely healed for a couple days when Obsidian was on the swing set, swinging and decided he was done and left go.  And fell.  Hard.  Face first.  He bled some (but not nearly as much as the previous split lip), there was a cut below on his chin.  His teeth looked intact.  We put some ice on it, it stopped bleeding.  He didn't eat much that night, but nothing to be really concerned about.  It wasn't that swollen.  Then the next morning, it was really swollen and he wouldn't eat.

I did convince him to let me feed him pudding and yogurt.  Eventually he ate some chewy granola bars and meatballs.  So I took him to the dentist.  When he opened his mouth for the dentist and let him look around, the "real" problem was clearly seen.  He has a huge deep laceration on the inside of his lip.  It was gross.  It takes quite a bit for me to look at a wound and say that, but it looks pretty bad.  "Ahh." said the dentist.  "Ahh." in deed.  He had warmed me that I might have to take him to a pediatric dentist if Obsidian was uncooperative.  Oh no, that was not the next step.  Next step was an oral surgeon.  Finding one that takes kids as young as Obsidian, with a wound as old it is was, was quite the chore.  His nurse was quite frustrated by the exercise.  A trip the following morning to the one oral surgeon who agreed to see him was set up (he wasn't working the day we went to the dentist, so waiting until the next option was the soonest thing, which the oral surgeon didn't want to wait that long for Obsidian would be seen, but there were no other options).  So the bottom line?  That little cut on his chin that we thought was the injury initially, well that is where the teeth poked all the way through.  The options at that point was have him admitted to a hospital and put him under general anesthesia then fix it, or hold him really tight in my lap, give him a shot of Novocain and just deal with him screaming while he was being fixed up.  I went with Novocain.  5 internal and 3 external stitches later, we were done.  I was informed if I would have brought him in sooner it would have been easier, even if it was yesterday.  Dude, I tried.  Antibiotics for 5 days.  Come back in 5 days to get the stitches out.  He'll have a scar, but hopefully he won't have any trouble with his lips (as he went all the way through the muscles). 

For anyone keeping tract of specialties I've had to take my kids to I'm at 8 (if you count specialists it would be more as I've gone through a couple in a couple areas).  Orthopedic surgeon, cardiologist, gastrointestinogist, neurologist, endocrinologist, geneticist, ophthalmologist, and oral surgeon.  Rock on world, rock on.

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?

Remembering Sept 11th

Each year as many other American's do, I find myself thinking about what September 11th means to mean and reflect on the time immediately surrounding it.  While many people remember watching and listening to the endless footage, that was not my thoughts drift to first.  With U2 songs being played as a soundtrack (mainly "Stuck in a Moment" and "The Hands that built America"), still shots run through my head.  The image of sitting in a continuing education class and looking up in shock and the shock on my coworkers faces as we realized what we were told was happening.  The look in my great aunt's face (who was suffering greatly from dementia at that point, she rarely if ever even knew my name at that point) when I told her what was happening and turned on the TV to watch the coverage.  The flags hanging from each house as I went on my evening walks, and the quite there was because no planes were flying (at the time I lived less than a mile from an international airport, under a flight path).  A picture of a little girl on her dad's shoulders waving a flag.  Finding a parking garage that overlooked the plaza that was having a rally so my aunt could watch, and how happy she was when a very nice mother and daughter gave us their flags and candles.  And my gratefulness for them doing that small act of kindness, my aunt was so sad and was having trouble moving past the point that I had forgot ours in the process of getting her out (at 94, taking her on an outing required more planning and work than taking Pyrope and Obsidian).  I still have one of those flags.  They are no different than a thousand of other small United States flags I've got over my lifetime, but that one is different. I remember going to DC afterward and seeing the still damaged Pentagon being repaired.  I remember talking to my dad (when I was eventually able to get through to him) and him telling me that this event would shape the background of my generation.  I find myself thinking, yes and no.  Yes, in many ways it has defined and shaped my generation.  And no, in some ways I think this recent "financial crisis" is going to be the defining and shaping event of my generation.

Above all else, I think of the lives lost because of Sept 11th.  Directly that day, the innocents that were in the Towers, the Pentagon, and on the planes.  The heroes that died trying to save others.  Those that have lost their lives in the quest to find Osama Ben Laden.  The lives lost in the wars in Afghanistan and Iraq (yes, I'm aware that particularly the Iraq war is not directly linked to Sept 11th, but my personal opinion is that we would not have gone into Iraq if it had not been for Sept 11th, and since this is my blog, I can say this).  I think about the hate and intolerance of extremist groups.  Not just Muslim groups towards Americans or Christians, but Christian groups towards Muslim or Jews or atheists.  Whites towards blacks.  It saddens me to think of the waste of lives and energy this costs.  I will remember with sadness what happened.  And I fight against it in the best way I know how, teaching my children tolerance and about other beliefs.

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.

Annual review and goals

Each year around my birthday, I make some goals for myself, and review my "bucket list" of what I have done, and anything I want to add to it.

The only thing I was able to check off this year on my bucket list was complete a triathlon.  I did it in 1 hour and 58 minutes.  Although I had no official goal other than completing it, I was hoping to be under 2 hours.  I did, barely.  There was only 1 person who finished after me.  I was surprisingly not that sore afterward.

 Also on my bucket list is to take a cake decorating class so I can decently finish my cakes.  I'm a decent to good baker.  I enjoy baking.  However when I go to frost my cakes, they come out less than great.  I have read some website and learned how to make and use fondant.  My cakes are looking much better, but I still would really like to take a class.  So progress was made, but I can't check this one off.

So looking ahead to this next year, what I would really like to work towards on my list is getting my SLR camera.  I would somewhat like to get this for living more time with diabetes than not.  Financially, it isn't so smart.  I'm not much of a coupon clipper/user.  I have been thinking of trying to do this more and anything I save by using coupons put in a fund for my camera.  My true goal on my bucket list is to take a photography class, but in many ways I would like to have my camera before taking the class so I can use it while in the class.  Maybe I could take the class next summer, I have more consistent baby sitters during the summer that I could get away for the class and do the homework.

Another item I have on my list is to keep a daily journal for a year.  While at least this point I'm not planning on posting daily, and a blog is not exactly a journal, it is closer to one than anything else.

Moving on to my general goals for this coming year:

My diabetes was a lot easier to control while I was training for the triathalon.  I told myself I was going to keep up on the running, but I haven't.  I really need to do this.  However, knowing me, I need to find another race and sign up for it.  I need a tangible immediate goal.  In high school I used to consistently run 5k's in the 22-23 minute range.  The 3 mile race I ran in June I did in 28:11.  So my goal is to run a 5k race at least once every 3 months, and be running it in the 26 minute range by next summer.

Get and keep my A1c in the 7's (Note: A1c is a 3 month measure of how well your diabetes is being controlled).  I know the official position of the ADA is now UNDER 7, in light of my hypoglycemia unawareness, for me 7's is a better goal.  When I get into the 6's, I have a LOT more lows, which are dangerous in themselves.

Along the same lines, I need to lose 30 lbs to get to my ideal body weight.  I haven't consistently weighed that amount since my freshman year of college (I did briefly weigh that amount during my first 18 months I was married, when I'm stressed I either over eat or under eat, and I was definitely doing the under eating for some time).  I know getting to that weight and maintaining it will help with both my exercise goal and my A1c goal. I'm not fond of low carb diets, but they are the ones that really work best for me on several levels.  I do a modified South Beach Diet.  The weight doesn't come off fast, but it does come off slowly and consistently, particularly if I am also regularly exercising.

Read 50 books.  Reading is a way I relax as well as learn things.  Since Obsidian has been born, I just haven't made the time to do this.  And I miss it.  Before Pyrope was born, I regularly read over 1,000 pages a week.  This past year I bet I barely topped 3,000 pages for the year.  This gets to be about 4-5 books a month.  I should be able to do this with minimal effort.

Read the kids 100 books they have never read before.  This would be 8-9 new books a month.  We go to the library typically once a week, I can easily get 2 different books each time, even just reading them there.  Pyrope in particular asks questions and wants details about so many different things, it would be good to help look at different subjects.  I'm sure I will read many books multiple times, and that is good for them.  I sometimes get into a rut though and never work to expand and explore different books.  This is laziness on my part.

So that is my year in review and looking ahead to the next.

Wordless Wednesday

Meanings of words

In recent years there has been a campaign to remove the "r word" from common American vernacular.  Most of the time the actual word (retarded if you are wondering) is not even used in the discussions.  I am completely against using it in a derogatory way, particularly when describing people (or situations) that are not "intellectually disabled" or "developmentally delayed" or "cognitively impaired" or whatever other phrase is now used to describe people who have below average intelligence.  Before retarded was the word to describe below average intelligence, the words "imbecile" and "idiot" were the official words.  So perhaps in a generation the "r word" will not be so closely thought of as people with low intelligence as that has not been how they are officially referred to as, but will it just be replaced by another word(s).  What the true problem is the disrespect and negative attitude some people have towards people with lower intelligence.

While it is not exactly the same, frequently my thoughts then turn to the "diabetic vs person with diabetes", "epileptic vs person with epilepsy", "obese vs a person of size", or "dwarf vs little person" debates.  Personally, I have no issue with being called diabetic.  I find it similar to being called a brunette.  No one would call me "a person with brown hair".  I'm called a "mother" not "a person who has children".  Yet I do know people who are very offended by being called "diabetic" instead of a person with diabetes.  Their argument is that they are not defined by their disease and take it very personally when they are called a diabetic.  My argument is that it is an adjective that describes me.  I don't want to have diabetes, but it is something that describes me.  And really even defines and shapes me.  While I don't let it rule what I do, it does effect what I do and how I do it and how I view the world.  Even though this is how I feel about the words, for the most part I use the politically correct terms (for many, many things I could care less about being PC).  Most of the time, I think there are a whole lot more important issues to talk about than these semantics.  It goes with one of my parenting and life philosophies "Is this worth making it an issue?"  And for this particular issue, my answer is "no".  I do enjoy getting into a healthy debate about it with people I can talk with rationally. 

So while I find the term "mental retardation" (used in the correct context) not offensive, I have been making an effort to not use the "r word".

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