OMG! I have a blog!

I started this blog with the intention of sharing my family story and haven't been quite consistent. Just when I forgot that I had a blog I decided to check on it.  Yep, it's still there.  Once you put your life out there in cyberspace it's out there... probably forever. When I checked the stats I can see that there has been some traffic.  I even checked out which posts have been getting hits.  Whether that means that it is actually being read is another story.  This made me feel obligated to post.  If the blog is getting hits.  Maybe someone is  ACTUALLY reading it? Perhaps I should stick with it after all?  Here I sit with a timer set for twenty minutes to hack out an update. I'm late for  F's second set of morning meds and I have a sink full of dishes calling me... yet here I sit.

Basically my summer has been filled with so many things. My daughter's swimming (being a swim mom and volunteering at swim meets as a USA official). Being a Taxi mom (getting these kids to all over their locations, Trying to maintain some level of running mileage (I did register for the marathon in December... not really sure what I was thinking when I did that). Trying to get a grip on my twenty plus year marriage (many arguments and counseling... we have an appointment today). I spent at least a month being sick (with some freak upper respiratory infection) and still trying to manage all of those duties.  Let's not forget all the other normal duties of laundry, house cleaning, etc.  All of this makes time fly by... so investing in this blog has not been in the forefront of my mind.  I forgot to mention I even registered as a college student... probably an epic fail for me and reality check. 

So much has happened and each one can be it's own blog entry.  Rethinking F's prednisone occurred yesterday.  Both F and I learned this week we have some weird congenital birth defect from our time as embryo's with baby gills (no joke... true statement).  My experiences as a stroke and turn official has it's own set of lessons and stories.  My list could go on and on.  For now I'll just post this and then figure out where to start.  I posted the draft I found sitting regarding our initial decision to wean F off of prednisone.  I'll try to knock out the follow-up to that one quickly.  Let's not forget the experience C and I had volunteering at the Special Olympics. Our tortoise even escaped and went on an adventure in the neighborhood. .  So I suppose rather than maintain this blog more for myself and my family so they can stop by and remember our adventures. 

The Prednisone for Asthma

In the spring of 2010, Forrest was really struggling with his asthma. He has a complicated lung system by not only the asthma, but his cerebral palsy and poor swallow and management of his own secretions and saliva. Many years without speech therapy had left him drooling with a slack jaw that just hung open. He would also allow his saliva to pool in the back of his throat resulting in some degree of aspiration that contributed to continued inflammation of his lungs and chronic respiratory infections. So that spring his pulmonologist recommended that he try a low dose of prednisone every other day. We decided at that time the benefit would out weigh the risk.

Then Forrest started getting speech therapy. Slowly and gradually I've watched him stop drooling and gag less on his saliva. He no longer has a jaw that just hangs open.  He can close his lips together.  Although he still coughs you can tell it's not always a result of his saliva running down the back of his throat.  He hasn't had pneumonia since 2010. He's done very well with respiratory infections.

I've been so distracted by the skin infections and cysts that I've given little thought to the use of prednisone until this winter when that cyst on his face abcessed shortly after a burst of prednisone. Then the infection returned after another prednisone burst. So far the doctor's have felt that the abcessing of the cysts has been influenced by the use of prednisone and the friction on the cysts based on his physical moved.

A week ago Monday we had F in the doctor office for a cyst under his arm that I just randomly discovered during his shower. We started compresses immediately. The doctor confirmed it's a cyst. During that appointment we discussed the use of the every other day prednisone. It seems that long term use has finally caught up with F.

The writing has been on the wall, but it took that appointment to really bring these secondary infections and the likelihood that there is a connection to his use of the steroids. Over time the use of the steroid begins to inhibit your body's own ability to heal and fight infection. Thus the reason we are beginning to see more and more occurrence of these infections.

We have begun the weaning process for the prednisone. I'm hopeful that with less drooling and improved oral motor skills that perhaps we can get away from the need for the steroid. My fingers are crossed.

This, that, and the other

I've really neglected my blog lately. I've been getting my daughter finished up with our home school year. I've been working on things around the house. I've been preparing my son's education budget for the following year. Just keeping  busy in general and avoiding the computer.

I've enjoyed riding my bike and running at my local bike trail while C has been at swim practice in the evening. It's been very nice to be back on my bike. Now I need to focus on improving my bike skills. I really appreciate that bike trail. Not only is the trail slightly cooler. I can see a myriad of different types of people. People watching is always fun.

Overall I've been trying to focus on what I have and the who I have in my life. I'm grateful for a warm place to sleep at night, food to eat, and healthcare. We are very fortunate to have these basic things. I am lucky.

I've been considering returning to school. I registered with the local city college. I've brushed up on my math. I'm considering nursing. I feel like my skills could rival that of many nurses already. I have a good background in quite a few things and have had exposure to techniques and nursing skills they may not see until they have graduated. I'm not considering this blindly. It may take me years to accomplish my goal. Hopefully I can manage it. Life has a funny way of putting you on another path.

I'm sitting poolside while my daughter gets a swim lesson. Appreciating her beautiful smile and the joy that swimming has brought to her life. She is growing up so fast. I'm also thinking of F. He's at the doctor with his dad. Another ruptured ear drum. The second this year. But at this moment, I'd like to just freeze time for both of my kids and live in these moments right here. How many times have I thought that? So very many. But there are more moments and memories waiting around the corner for us and I just can't wait.

Overwhelmed and lonely

Today I woke up feeling incredibly overwhelmed and lonely.  I feel completely emotional and I've had tears streaming for the last hour.  I have days like this occasionally, but it's been some time.  I am worn down.  The individuals who used to be my closest friends have lives that have transitioned into different places.  They have become incredibly busy and my schedule no loner fits theirs or they have formed friendships that are more purposeful for them.  I know that friendship comes in cycles... I KNOW this.  I long for those friendships and the escape they provided from my daily life.

Today, I also feel that overwhelming sadness of having not a single family member who has supported me or does support me in any way.  I look around at most people I know and many of them have a parent they can call for moral support or even siblings.  My sister who lives locally doesn't have at the time in her day to send anything more than a Facebook post or an occasional email.  I finally had to stop calling and trying to coordinate get togethers with her and her girls because the rejection became just to painful.  It's a hard pill to swallow that your own sister really doesn't want anything to do with you or your children.  She's never said it.  The only thing she'll admit to is being bad at maintaining relationships.  The truth is we make time for the people we care enough about to make time for.  My mother... we don't get a long.  She sends guilt money occasionally which I will happily accept simply for what it is.  But really, she's done her own damage to not only myself, but my kids.  I've tried to move beyond it, but there are times when it's just hard.  It goes back to that saying we make time for the people we care enough about to make time for... I guess I don't care enough about my relationship with her to make time for it.  My brother completely superficial and I think his sexist.  Enough said.

I'm overwhelmed worrying about college, planning for retirement, trying to think of ways to get out from under debt... the list goes on.  I'm also overwhelmed by the thought  that if I were in crisis who would I call.  You know... I can't think of one person I'd call first.  Well, okay one... maybe two or three.  But that's it.  My reality is that I have not one physical person in my life that I feel I can count on in crisis.  That thought alone overwhelms me.  I'm isolated and lonely... I know this feeling will pass, but right now it's painful and it's real!