Sunday, October 25, 2009

Simply Madison...

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Today has been a rather quiet day, which is a good thing.  We increased Gavin's Morphine, which seems to be helping his discomfort.  Tomorrow we will be talking with the Pain Team about possibly using a Fentenal Patch, though because of Gavin's size it might not be possible, but we'll see.  Gavin cultures that were drawn yesterday are both positive for the nasty gram negative rods with a little note on the bottom that reads possible other organisms -- great.

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Madison and I took a much need breath of crisp fresh air this morning.  She has been having a difficult time here.  Although we have not talked with her about things I think she probably picks up on a lot -- well, I know she picks up on a lot.  I know all she needs is me.  Adam does a great job helping her with things but she really just wants to spend time with her mommie -- which is just so hard because I just want to spend time at Gavin's side trying to comfort him.  Learning to find a balance is difficult but I'm really trying hard.  

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I find these photos to be simply amazing -- just because they are simply Madison.  Her personality shines -- her beauty is so strong both in and out.  Please pray for our little girl.  So much is going in our life right now not only sad things but also amazing things and I think that is hard for her four year old mind to cope with.  Even Adam and I struggle to balance out the really happy emotions along side the very sad ones.

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I just wanted to add just so we all are on the same page -- nothing has really changed in Gavin's condition.  He has been getting progressively worse over this past year but nothing recently has really changed.  It's just Gavin care that is changing.  Our Doctor said that he can probably be keep Gavin alive for a very long time -- but he can not give him quality of life.  We talked with the doc awhile ago and we all decided that quality is more important to us than quantity -- so that's what we are shooting for. Just wanted to clarify.  Yes -- it is a very sad transition but one that will ultimately lead to Gavin's comfort and happiness.

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21 comments:

KK said...

She's a cutie! Praying for all of you.

Jen said...

she is beautiful! I too found the balancing act so difficult.. just keep doing your best.. I am sure they both know how much you love them.. Praying!

Anonymous said...

I am Sam Connor's Oma and just wanted to let you know that I have been checking in with all the "Little Wonders" as Jason calls them. I am so sorry for all that you are going through.
I belong to an online group and I posted about Gavin, so there are a whole lot of prayers being said from people that you do not even know. I hope it helps a little knowing that there are so many people thinking about your family, and keeping them in their prayers.
Kit Freeman

mandie said...

she is so precious! i will be prayig extra hard for her, too. i know that when you have a sick child that the healthy one(s) tend to get lost in the shuffle.

Tina said...

You are such an amazing photographer.. I love these pictures.

Anonymous said...

Love the pictures of Madison. Thanks for sharing them. Thanks also for sharing your thoughts and struggles as well. I think it was Rick Warren that said that it is not so much mountains (highs) and valleys (lows) in our life but more like two rails of a track (both joy and sorrow) happening at the same time. I continue to pray for all that concerns you and your family. Be blessed and be safe in Him! ~Debbie Hiesey

Jessica said...

She is so beautiful. We also have a four year old in the mix and I love it. I can't begin to imagine how you walk gently beside both of them...meeting all their needs in joy and sorrow.
I'm going to pray specifically for Madison this week. An extra bit of love for a very special big sister.

Little Millie said...

What beautiful pictures. This is a gift that you give your family and to those of us who have never met you but pray for you all the time. Just wanted you to know that I pray that you will have the peace that only God can give about every decision that you will have to make. I am also praying for understanding and peace for Madison in a special way this week.
Praying!

Lorra said...

Madison is a beautiful little girl. The pictures of her are so precious. Praying for your family as you go through daily struggles. May God continue to walk by your side and carry you when you need him most.

Alison said...

I am continuing to pray for you. I am so glad that you got to take a walk outside with your daughter today. Sometimes those moments are the ones that refill our energy so we can get through the day ahead.

Cindy Heintz said...

Madison's pic are just breath taking!! :)
Thought and Prayers Always,along with much love to All.

tripntwinmom said...

Your princess is just gorgeous!

I will pray that you find the courage and the strength to obtain that balance that is often so hard.

Cammie Heflin said...

She is beautiful! Your pix are always gorgeous. I'm praying for all of you, hope things improve soon.

therextras said...

She reflects your beauty, Karen.

I do not expect anyone to judge your decisions here. Any.one.dare.not.

Barbara

Reagan Leigh said...

Love, love, love those pics! The last one is my favorite. You are such a great photographer. I will continue to keep your entire family in my prayers.

Anonymous said...

She is so beautiful. And those eyes, they get it way more than any 4 year old should. She'll be okay. God is taking perfect care of her.

Anonymous said...

I feel for you and your family, i dont know you but i can see you are nice people who dont deserve this, I just wanted to say i know how you feel because i have been there myself i had twins and one of them passed away from liver disease at 10 months , we did every thing we could, omagaven the lot and it didnt work, i lived in the hospital for 6 months and it was the worst thing i have ever dealt with in my life, it is not a way of life,i didnt want that for my baby.

i agree with you and support you 100%

God Bless you and your family

Jodi R said...

Karen, Madison is an amazing girl, her smile brings smiles to our faces also:) I sob everytime I read an update for you and your family. we pray for strength and comfort for you and Gavin. You and Adam are amazing parents, we are here for you!!!!!!

Brooke said...

She is just gorgeous! And photographs so well might i add :) Praying for you guys, especially Gavin, and hoping everything with the new house is running smoothly.

JayCee said...

Simply Beautiful!

kyna said...

Beautiful pictures, Karen. I love you.