Updates and Rantings

Yesterday Westin celebrated his 13th birthday.  It has been an interesting year for Westin.  As a quick recap, about a year ago he started having stomach pain, like a burning.  We eventually saw a new gastro and he helped us weave our way through testing to determine the cause.  What we ended up finding was that by helping Westin evacuate, with the use of regular Miralax, his burning was much less.  He still has a constant burning feeling, but not too noticeable.  When he goes without eating, longer than usual, he ends up with worse burning, so he tries to remember to eat.  ;)  We had a visit with our gastro this week and we decided that we would just keep on the same path unless we see things get worse.  Since everything in all the testing looked good, there isn't much else we can do at this time.  We "could" try an antidepressant (I wish I could remember the possible diagnosis) that might help, but since it doesn't bother Westin we are going to just stick with what we are doing.  We will repeat his blood work yearly and probably not see the doctor again for a year.  I wish all our specialist were that infrequent!  ;)  The good news:  since the worst part of this stomach journey, Westin has gained all of his weight back plus a good 5-10 pounds.  He is growing like a weed and seems to be thriving.  One road block we did cross once he started feeling better was a lack of appetite.  It seems his anti seizure med (Zonegran) causes anorexia.  With the addition of Periactin his appetite is healthy and we have been able to stay on the Zonegran.  He has been sucessful in being seizure free on the current dose which makes for one less anxiety for his parents.
His diabetes has been fairly painless lately (on his parents) as we have learned to adjust more quickly to changing insulin needs (probably due to all his growth).  Westin seems to live on temp basals as his needs vary often enough that I feel little I don't need to do a permanent basal change at this time.  Although, to make things easier at our endo appointment at the end of the month, I will do a permanent change when the time gets closer.
Now for the rantings!  :D
I have these things that I just have to rant about that Facebook doesn't feel appropriate for.  This morning, one thing is really bothering me.  Choices!  Parents make choices.  Every choice they make affects their family.  Some choices are barely noticed, others have the potential to make major impacts.  13 years ago we made a choice for me to be a stay at home parent.  Our business was such that we could make it on it's income.  When Westin was diagnosed at 2, it was a blessing to be home with him.  When he started school and eventually we ran into problems with administration and his diabetes, it was a blessing to be able to homeschool him.  But let me say, it came with a monetary sacrifice.  There were times when it would have made sense (in a monetary way) for me to go to work.  But it wouldn't have made sense for my family.
Now, I am not saying that it is critical that all families have a stay at home parent, but what I am saying is that all families CAN have a stay at home parent, it is just a choice.  Our family lives a much more modest lifestyle as a result, but it is a choice.  I can't imagine being gone all day and coming home to still fulfill my domestic duties.  I can't imagine having a job that requires travel.  I surely can't imagine being a parent in the military with the fear of deployment or the reality of deployment.  But imagine what all that would be like to my children, especially if it was thrust upon them after years of having me available.  I definitely can't imagine making a choice to work so that I can afford a bigger house, drive a nicer car, take a better vacation!
Rant over!
What I have been doing lately, that I really enjoy, is working on a new blog.  Earth Sheltered is a blog about current earth sheltered home projects across the internet, that I just happen to love watching and getting ideas and learning from.  We have an earth bermed (think walkout basement with a roof) home in our future, in case you wonder what my fascination is.  I was also fortunate to come across an interesting man on the internet that is building a huge earth shelter home north of us and he has really ramped up my energy and interest.  You can learn more by checking out the blog mentioned above.

Sorry for the long absence.  Can't promise when I will be back.  But if I make this my place to rant, it might not be long!  lol

Stealing Time When Everyone is Sleeping on the Living Room Floor

Boy, it is really hard to "steal time" for myself, including writing in my new blog! As I sit here, on the couch, everyone is laying down for bed. Mind you, they are laying on the living room floor, where we have been camping out since we got back from the hospital. Jason is still uneasy about the possibility of another seizure. He feels he can watch Westin better this way. I honestly don't mind as I get the couch and I don't wake up with my usual back pain. FYI: memory foam type mattresses aren't the best choice for overweight people, at least not me! So, it is like camping in the living room. Westin is on a twin mattress. Jason and Wieland are on a blow up mattress. It isn't too different from our normal arrangement. Normally we are all in our master bedroom.

It started when Westin was 2 and diagnosed with type 1 diabetes. When we brought him home from the hospital we moved his full size bed into our bedroom. (Our bedroom isn't that big so imagine it will a queen and full bed plus dresser.) I would sleep right next to him, to watch for sweats or a change in breathing, anything that would let me know something was wrong. For some reason I didn't think to just check his blood sugar. Later we had a twin day bed sent our way from a friend of my mom. That opened up a lot of room, but now I was sharing a twin with my 3 or 4 year old. Anyway, it worked. Then, when he was 4 and had just started pumping insulin, I was, for the first time in 2 years, doing night checks. I never had checked Westin's blood sugar at night before then. During the start up on the pump, our trainer asked us to do 3 am checks. We went from being use to chasing highs with insulin to being coached to keep his numbers much lower which meant chasing lows with food. We got a little too comfortable and one spring morning, right after waking, Westin had his first and only hypoglycemic seizure. After that day, I became a maniac about night checks. Every time I would wake at night, I would have to check his sugar. I couldn't go back to sleep worrying that I might have woke due to my mother's intuition. What if I was suppose to wake up to check his sugar? For a period of time we did put Westin back in his own room. And for some time my husband and I would take turns going to check his sugar. If I woke, I would either go do it myself or have to wake my husband to go do it. Eventually, Westin just ended up back in our room and I pretty much do all the checks. It works for us.



So along came Wieland. A few months after his 2nd birthday he proved he could climb out of his crib, which was in his own room. So for a little while we got by by extending the top of his crib with a gate and some zip ties. I wish I had a picture to share. It was a little barbaric and family would tend to ask if I was still caging my child. So when he was old enough to handle sleeping on the floor, without too much disruption, we moved him to the floor with Westin, right next to the bed. Everyone is happier this way and I don't have to walk across the house to do the never ending blood sugar checks. We have decided to embrace the idea, rather than beat ourselves up over it. I purchased a queen bed frame that is meant to have a trundle. And I even got a full size trundle frame. Now I just need to scrape up the money for a full mattress. (And a new queen mattress...have I said how much I hate my mattress.)

Now some of you are still probably wondering why I check Westin's sugar up to 10+ times a day?! Westin's blood sugar is never what you would call stable. Remember, type 1 diabetes is a balancing act. They don't have the benefit of the body doing the self regulation. They are completely dependant on the insulin we inject or pump into the body. You are always trying to balance food and insulin. A little too much insulin and you are fighting lows. Too little insulin and you are fighting highs. A little too much exercise and you are fighting lows. An air bubble in the line from the pump and you are wondering if the resulting high blood sugar is from a bad infusion set (where the insulin enters the body), too little insulin, oncoming illness, growth spurt, air bubble, full moon? It is a constant guessing game. So how could I possible sleep well at night for 8-10 hours without multiple blood sugar checks. SO much can change in 8-10 hours! Would I go 8-10 hours during the day without checking him? Absolutely not! I wish I was a heavy sleeper but I am not.



On the topic of sharing a room, we have a three bedroom house and are only using one bedroom for actual sleeping! Why not consider turning our house into a co-op? I say that only half joking. If I could find the right family, I would actually consider having a family live with us and share expenses. We have the room! Ideally it would be great if it were another homeschooling family, especially with another little one. Nothing is harder than trying to homeschool with a 2 year old....well, when it comes to homeschooling that is probably our biggest challenge. We definitely face harder challenges throughout the day.


Okay, so I really got on here tonight thinking I would explain why we started homeschooling. Maybe I will save that for another day. I think I would rather head to bed...well, lay down where I sit typing this (the couch) and go to sleep...after I check Westin's blood sugar of course :)