Tuesday, June 16, 2015

Making Time Stand Still

Well I definitely was not in my happy place with my last post.  I needed a couple of days, a week even to get out of my slump.... 
Thankfully for all, the slump is gone and this post will have a much happier tone.

Alexa has a couple more days as a 6 year old.  Her 7th birthday is this Saturday.  And we have quite a busy couple of days ahead of us.  As of today, regular dance classes have ended for the year! (Hooray! Oops--did I say that out loud?)  All that is left is one rehearsal and then this weekend she will be performing in 3 shows!!  Somehow, we will fit in some birthday celebrations in there. 

It is crazy to think that in a couple of days I will be the mother of a 7 year old.  Where did the time go?  How did it go by so fast?  In the blink of an eye, my baby is not a baby, she is not a toddler, and she is not a preschooler, she is a beautiful little girl!  And growing into such a wonderfully loving child!

Just in case I needed reminding of how big my girl is getting, today we received our dance pictures that we took a couple weeks ago...


I wish I could have time stay still... just a bit. 

Time is flying by and I need to take a minute to stop and soak up all these moments--all the snuggles that I know are nearing an end, all the hugs and kisses that will soon be less and less.  How do I keep all these moments--the moments of laughter, the moments of learning something new, the moments of bonding, the moments of appreciation, the moments that fill my heart with joy--how do I keep them all in the very tip of my memory?

I guess this post was more bittersweet than it was happy.... 



Monday, March 30, 2015

Enough Already

I'm in a bit of a snippy kind of mood and those never lead to good posts, so a little unsure of how this will go.  Here goes nothing I guess.

I've had enough....

Now, let me start off by saying, Alexa is good, more than good really.  In fact, we had bloodwork this morning, lots of it.  Both liver and metabolic, which required being up at 5am to travel 1 hour for a 5 minute draw, instead of our local lab which is a 5 minute drive away. Liver labs have already been reported and they are absolutely wonderful.  I do not expect any surprises from the metabolic set, I think it is safe to say, her health is doing great.

Now, with all that, I am sure the rest of today's thoughts will make me seem, uhhhh, how do I put it? selfish, unappreciative, whiny, etc, etc.  Yes, today I am all of the above!
But sometimes, you feel how you feel and I think that's okay.  I have not forgotten how blessed we are.  I know that well.  But today I am tired...and.I am maybe just over it!

So, if you are not into hearing my whiny vent, you may want to stop reading at this point.  No offense taken, really.  I promise!

Alexa is doing really well academically.  Her latest report card was quite good, but I am finding that she does need to work harder than her peers to understand certain concepts and she is having some difficulty focusing, especially when her prograf levels(immunosuppression drug) are running slightly higher.  Attention issues was a huge concern pre-Ravicti as well as pre-transplant, and while it is much improved since transplant, there are still some difficulties.  This is not uncommon for kids with citrullinemia and also not an uncommon side effect of Prograf.  For some time this upset me a lot, but it is what it is and we will deal with it.

Last week, Alexa had a regular vision check up and to our surprise, we discovered that Alexa is quite farsighted, with one eye weaker than the other.  She requires glasses full time with quite a strong prescription.  
And I am not sure why, but this is the one that might have been the straw that broke the camels back so to speak.  
And it's not because she needs glasses; in fact we went to pick out a pair today and she looks so adorably mature and grown up.  It is not the actual glasses that I have a problem with.

My problems lie in the fact that it is just ONE MORE THING.  

One more specialist appointment among all the others to add to the mix and try to juggle into my new job and new schedule.  And have I mentioned that I am tired. 

Have we not dealt with enough? For once, could it just not be someone else? I mean, we already have the frequent blood draws, we have liver clinic, we have metabolic clinic, we have pediatirican apoontments, we will probably add in psychology for the attention.  Really? Do we have to add opthalmology?? Could this one not have been directed somewhere else? Could Alexa not have been spared just this once?

I know she has dealt with so much more and this is really nothing.  I know I am being petty, but in all fairness, I did preface my vent.  Fair warning was given....

So I guess, I am just over it. 

Enough already!