Friday, December 26, 2008

Monday, December 15, 2008

update






Our little guy has been doing great since his last update. He weighs in now at 17lbs, 27 in. His favorite things to do now are play with the cat, watch Noggin and sit up on his own. He has started clapping, and is eating big boy food - his favorite is carrots. He also started saying 'momma' :) Our last doc appointments have all gone well and they are all pleased with how well he is doing. And so are we!!!

Monday, December 1, 2008

Monday, November 17, 2008

The Same Scar- by Ashley Auzenne

My dear child,
When you are older and look down at your chest,
You no doubt will notice you are different from the rest.
Don't be afraid to let people know
For your mommy has a scar,too you see,
that just doesn't show.
From the first time I held you and up until even a few minutes ago,
I had no idea, and still don't, of the road you are meant to go.
The plans I dreamed while I waited for you-
which changed from hour to hour,
Have since been given and entrusted to a much higher power.
But please never fear or be afraid to cry
There may even be a day when you ask me 'why'?
I will do my best to show no fear,
Because every minute is a gift-
just to have you near.
When I look at you,
and see your father's face,
Its a gentle reminder that through persaverance,
we gain Grace.
My son,
my beautiful child,
my true gift of love,
Even though we know not the plan that is to be from Above,
Know this-
With every day that you change a grow,
To become that person we have yet to know,
No matter where life takes you- near or far,
Our hearts and faith are kept safe,
For we share the same scar.

Thursday, November 13, 2008

Poem I just wrote 5 minutes ago.....

You know,
I came to a realization this evening. It always amazes me how the brain can let you have moments of clarity in between moments of, in my case, sadness. Let me explain. And I don't explain because I NEED you to understand me better and where I am coming from, but I would LIKE you to try and the only way you can is if I give you the tools.
I apologized to Murvin tonight for my negativity. I have found myself nit-picking alot lately and I hate that. But its like I couldn't shake it and I didn't know why. Am I going crazy- I've often asked myself... what's 'wrong' with me that I'm so unhappy all the time... maybe I need therapy. Well, the answers to all of these is- yes, at times I feel overwhelmed to the point of craziness; NOTHING is 'wrong' with me in the sense that I am handling my life as best I can for a person who has gone through what I have; and do I need therapy? I think so. Therapy in the sense that I can have someone help me see things from an outside point of view and get better coping skills so I can be the best mom and wife I can be.
See- the 'clarity' that came to me tonight was this: the best way to describe how I feel and what I am going through its as if I have been fighting a war. Murvin was very understanding and patient as I tried to give a good analogy to make clear my point.... When Murvin went to War, he saw things and did things that he never thought he would. Things that changed him and how he looks at the world, other people, and himself. But he was conditioned, as he said, to deal with terrible situations. The nit-picking is actually me being jealous that he can cope so well and I am a mess and constantly cautious. I would be lying if I was to say that seeing countless blood draws, handing him over for procedures, hearing him scream and cry from something almost everyday, tending the wounds, gathering and retaining information from countless doctors and being given statistics and probabilites of what could go wrong and having to listen to them tell me when things did, living day to day with the uncertainty of his health and life in general, keeping records of everything he ate, his weight, his sats, his coloring - all while keeping up a brave face for him and trying to be a good first time mom- and retain the ability to get back up again when you get knocked back by a new issue or problem that comes up....... if I was to tell you that these last 6 months haven't affected me, that would be a lie. I have seen things done to my child and heard information like 'survival rates' about my child that many people never have to hear in a LIFETIME.
Its almost like PTSD. Hear me out. While it is like the PTSD you are probably thinking of- Post Traumatic Stress (which I do believe that I and many parents dealing with similar situations go through at some point)- but I also feel like I've got another form of PTSD. A Parent That Still Dreams. Despite all of what I said up there- I still dream and every morning when my little man gives me kisses and wraps his arms around my neck (and pulls my hair lol) its as if my dream has come true all over again.

So- here is the poem that just came to me. I haven't written in so long, but it was very theraputic and I would love to get feedback.

WHEN I LAY HIM DOWN TO SLEEP
by Ashley Auzenne

When I lay him down to sleep,
I pray the Lord, my world to keep.
For if my son is lost from me
On planet Mars I might as well be.

When I lay him down to sleep,
I pray the Lord, my soul to keep.
For if my son and I should part,
An emptiness as wide as the sky would fill my heart.

When I lay him down to sleep,
I pray the Lord, my dreams to keep.
For in his sweet face and tiny hands
Lie his mommy and daddy's wishful plans.

When I lay him down to sleep,
I pray the Lord, my hope to keep.
So easily lost and at times hard to retain
Through hope in the doctors and medicine and surgeries do help us sustain.

When I lay him down to sleep,
I pray the Lord, my fight to keep.
Though no uniform or weapon be seen
The bond between parent and child let nothing come in between.

When I lay him down to sleep,
I pray the Lord, MY EVERYTHING to keep.
For each new day is better than I've ever known
And please Lord, let me have many more before you take him home.

FROM cafepress.com-These purchases help families or organizations.

These purchases help families or organizations. These are some of the things I like and hope to order. Please check out the website and search under ' chd' or 'hlhs' and' aps ' to show your support for Parrish :) They have many different things to choose from like shirts, mouse pads, clocks, buttons, sweaters, kids clothes, etc.
back of shirt- they have ones that say 'my grandson, my nephew, etc also
front of shirt with scar design
' a mended heart is a special heart'
' congenital heart awareness ribbon'

Taken before Veteran's Day dinner for Murvin
He served in Iraq while in the Marines

First feeding-of course, HAS to do it himself lol

What is 'antiphospholipid antibody syndrome'?

What is APS? APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.


so handsome....

mommy and me

daddy and me

he is so cute!!!


in the tree at my mom's

isn't he ABSOLUTELY BEAUTIFUL?!

Its been awhile I know

Hi everybody-

I took a little break from blogging and updates just so I could get myself together. Parrish has been doing REALLY great! His last cardio appointment went well, as did his pediatric one as well. He is all up-to-date with his vaccinations finally, and has started his monthly RSV that would otherwise cost $3000 a piece, but since he has a heart problem we don't have to pay. When we met with hematology last week they said that he has the 'antiphospholipid antibody syndrome' but they want to wait and check his blood again in January before they make any changes. I will try to post info about this. So, we don't have much of a plan except to continue giving his daily injections of blood thinner.
We went out of town for the first time since before he was born and visited my family for a few days. It was really great. On the drive down there with him in the backseat, I felt like I had 'stolen' something really valuable like the elephant from the zoo and was on the loose :)lol. The freedom was very foreign.
We just started cereal a few nights ago and he is uncertain about it. Sometimes he eats it eagerly and other times he gags lol. So, we will take it slow and see how it goes. He is so cute and getting so big. He weighs 16lb and is 27in long. He is usually in a very pleasant mood and enjoys playing with all his toys and giving his 'hugs and kisses'. He really is cutest first thing in the morning though, and I am so happy to get those moments with him- its like a little gift each morning just for me :)

Monday, October 27, 2008

so HILARIOUS- video

my beautiful handsome boy :)





doing good at home- LOTS of new pics


at his last 'baby' cardio appt lol

what a couple of handsome guys lol




mommy cleaned up the mullet in the back!!! not sure
WHAT to do with that party on the top lol

Sunday, October 5, 2008

from sunday- he is getting better



pics before our latest drama- before cath



all hail the Crab King lol


really wants to sit up :)


100 Wishes for Parrish

  • 1.a handsome look- madeline
  • 2.adventure- nathan
  • 3.all the love in the world- uncle matthew
  • 4.best of health- uncle matthew
  • 5.bravery- mommy
  • 6.charming personality- madeline
  • 7.common sense-jane
  • 8.compassion-jane
  • 9.courage- daddy
  • 10.curiosity-daniel
  • 11. generosity- mommy
  • 12. gentleness- mommy
  • 13. health- mommy
  • 14. humbleness- mommy
  • 15. humor-nathan
  • 16. inner strength- mommy
  • 17. integrity-matt
  • 18. intelligence- daniel
  • 19. long, happy & fulfilling life- uncle matthew
  • 20. many caring people in your life that you can call family & friends- the cowleys
  • 21. no regrets- uncle matthew
  • 22. strength-matt
  • 23. true love- mommy