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!

No News Is Good News...

Or at least in our house, that seems to be the case.

In the week that we have been home, we have had two sets of blood work done(Friday and today) to closely monitor all her liver function numbers.  They look great.  On Friday, the AST was 38 (completely normal) and her ALT was 81, almost down in the normal range--I am told this one takes a bit longer to come down.
Both sets resulted in no dosing changes for her medicine.  That is good--that means that they have figured out the exact dosing required for her Tacrolimus(FK/Prograf) which prevents rejection.
And we do not have to go back for blood work until next Tuesday!  Must mean that they think she is pretty stable.
I must say,  I love the ease of blood work when having a PICC Line--Seriously--no tears, no stressing about whether they will find the vein on the first try.  It is so fast and pain free.  If it weren't for the fact that we cannot get it wet at all, I think I would keep it forever!

Alexa is slowly being weaned off of some of the other medications that she gets.  Her Prednisolone dose which is another steroid to prevent rejection is being tapered down every 2 weeks until we have reached 3 months post-transplant.
Ganciclovir, which is the intravenous medication that is administered by our home care nurse has gone from 2 times per day to once per day, again for about 3 months post-transplant.  This medicine helps prevent some viruses that are pretty bad for immunosuppressed people.
I will be so very happy when she no longer needs these medications.  They are harsh on the body and have some pretty serious side effects with higher doses.  I hate that she needs them, but what can I do, she absolutely needs them to remain infection free and prevent rejection all at the same time.
One of the side effects that I knew about but didn't really envision was hair loss.  The medication can temporarily cause small patches of hair loss.  I know it is just cosmetic and I know that it is only temporary and maybe I am being silly about it, but I still feel like crying when I see it. There are just some things, that no matter how much you know in advance, you just can't be prepared to see--This for me is one of them.   In the meantime, there is a lot of ponytails going on in this house to cover it up.

As for food, we are slowly making some progress.  Chocolate milk, although she is not interested in drinking it on her own, she will drink it at breakfast and dinner.  She may not be happy about it but she drinks it.
She loves cheese and everything that cheese is on!

Eating some good old Kraft Dinner--This meal never disappoints

Tim Horton's is quite happy and will sure to make a nice profit off of Alexa's favourite breakfast item--Bagels with cream cheese!  Don't mess with her when she is eating one of those!

She also had a burger for the first time--I wouldn't say she loved it, but she did eat the portion that we set for her--small victories!

Today is Chris' Birthday.  Alexa and I prepared a very rich meat and cheesy lasagna.  She has helped me before, but this time was different.  She was so happy to sneak the shredded cheese and finally I did not have to tell her that she couldn't.  She loved every minute of it!  And I in turn, loved watching how happy she was!

Before I sign off, I would like to wish Christian the very happiest of Birthdays!  This man has shown again and again how much he loves his family and that he would do ANYTHING for his children!  Chris, you are a wonderful father and husband and deserve only the very best to come your way.  Your children lucked out in getting a true hero for a father and no one is more proud of you than I am.

HAPPY BIRTHDAY CHRISTIAN!!!