Archive for November, 2009

My heart is full to the brim today. I’m having one of those days where you’re so in love that you might burst into tears. Ginger is growing so fast, her second tooth popped through yesterday. I hate that I can’t slow it down, but trust me I’m beyond grateful and cherish every single moment. A few of my favorites are

* The way she buries her face into me when she is tired

* Her precious and infectious laugh

* Her deep blue eyes that seem to know far too much for their age

* The way she gently touches everything with her thumb first and then grabs hold with all she has.

* Squeals for joy (the cat might feel other wise)

* When she wants me to hold her she cries out, Nana Nana! Oh Nana never keeps her waiting.

*Watching her sleep in my arms… Oh I’m crying already…

*Her wild blond hair when she wakes up

* How she goes from a dead sleep to wide awake in the blink of an eye

*When she sleeps she holds onto my shirt so tight so I won’t try to put her down (most times I don’t and this is another reason things seem to never get done.

*Her wet open mouthed kisses. They are very rare and my favorite thing. We joke they’re 10 second frencher’s because they’re long and sometimes she gives you a bit of tongue. I wish I could keep one in a box for when she’s all big and I need one more.

*The way she crawls away mid diaper change every time.

*How one look from her could bring me to tears.

*Her strength and how very brave she is in all situations.

*All I learn from her about what is important in this short life.

*Her curiosity

*The way she bounces to music.

*She can bring anyone’s walls down in a matter of seconds.

*To be able to see what Derek and I are together, and it is far more wonderful and beautiful than we ever imagined. I knew our love and bond was strong and beautiful, but to see her come from us… is nothing short of a miracle, that only we share together. She makes our marriage stronger and more meaningful.

*The miracles that await her, I’m blessed to be able to be part of.

My heart is fragile now. I thought I was strong, but now I know my well being, happiness, and my heart all depend on Ginger. My mom would tell me when I was little to love a child is like having strings attached from your heart to theirs. Your love is so deep it pulls your heart strings. I understand that now. I think she has my whole heart in her pocket though. I can’t even stand to think of being apart from her. I couldn’t live without her. I love this child so deep. She is my life.

You see that belly? Oh how I love that round belly.

It is perfect for kissing and the occasional tickle. Not very often because I think tickling is actually really mean. I might be weird but I hate it so only once in awhile she gets tickled by my hair or kisses but not too much.

I love Christmas! We got our Christmas lights up last weekend which I know is early, but there are a few things I just can’t wait for. The outside lights are my favorite because I always think it makes the house look like a home and it reminds me of a Gingerbread house. Well, it is a Ginger house. Ha! Ginger loves the lights. We put them up across the front gate and brought her out to see them.  She squealed with joy gently touching them with her little thumb.

Oh with all the talk of Christmas I almost forgot, Happy Thanksgiving! I am SO thankful for my family, health, friends, love, faith, hope, and miracles… I’m hoping the year to come is full of all these wonderful parts of life. Especially miracles. *wink*

Whenever Ginger sneezes or coughs my stomach drops into my feet. The other day she sneezed and I made a big fuss. God bless you! You’re not sick are you? Feeling her forehead, I mean the whole nine. She smiled at me and “sneezed” again. I was paying good attention this time and realized it was fake!  I played along and said Oh God bless you sweetie! She smiled and continued to “sneeze.” This has been the fun game all week and the sneezes are getting bigger and bigger spraying my glasses with spit. We keep blessing the fakes, figuring no child (especially, this one) can be blessed too much.

Last weekend Derek and I decided we needed to do something fun. It was his 6 day work week and Sunday was our only day off together. With flu season here our options for outings are limited. We decided with it being fall there really was only one thing to do… Oak Glen!! We drove up there and it was the perfect weather. Crisp, but warm in the sun. We had lunch on the grass and went for a walk. We ate corn on the cob off the bbq and apple dumplings. It was a wonderful day.

Little Ginger in the big Redwoods

Sampson’s <3

I know everyone thinks their  baby’s the smartest, but an eight month old that can do itsy bitsy spider?! Oh yes she can!

Today was a GREAT day! I have been feeling a bit overwhelmed and trying to work on my hope factor. I have this consent feeling that we are in a race against time. Which we are… I just get anxiety when I think of how long it might be before a miracle drug comes out and stops this terrible disease in it’s tracks. I have to protect her from lung damage until this happens. That means no colds, no flu, no sickness at all. This is a lot of responsibility to keep a child from ever getting sick. I know that is impossible but it is the pressure I put on myself. Her health is my only… well, it’s my life. This is my everyday struggle.

Today I felt like my everyday FIGHT to keep and protect my child was recognized today at clinic. I still find myself getting all worked up before clinic. I’m so scared they’re going to say we are being admitted to the hospital again. I knew she was healthy, but I still get all worked up. Ginger is 8 months old now. Today they weighed her and she is… EIGHTEEN POINT SIX POUNDS!!! That is the 75th percentile!!! Very good. Her perfect head is 90th percentile which shows great brain development. (Not like we ever doubted that) Her lungs were CLEAR. The iron we have been working so hard to bring up they said there was no reason to poke her because they could tell by looking at her, with her rosy cheeks, she is HEALTHY! They said we are doing great and our hard work is showing. They said there is no failure to thrive here, she is on the chubby side! Music to my ears. When we asked about the drug development, they said keep doing what we’re doing and make lots of plans for her. Her future looks bright. After a few tears of joy and a thank you prayer to God we headed home. Today was a great day, and  I’m having no trouble with hope tonight!:)

Hyper Saline 7%

“clapping”

I’m not really sure anyone would care to read this but, I have had a few people ask what our day consists of or what meds she is on. I was encouraged to write a day in our life so people could see what we do. This is an average day. Of course they are all different and for some reason it feels much more busy when you’re here. I feel like we never sit down until night. This is what it like to FIGHT for your child’s life. I’ve been told it gets easier and I believe it will. At first it was a consent reminder of the terrible disease that has a hold on our lives. Now that is not the ONLY thing I think about. We laugh and read books and play… I think about it most during clapping. I have been really trying to listen to Derek. He has this sureness about the way he says they will cure her. I believe him because I have to. I want to enjoy my life and that is how I can do it. I hope he has this sureness in his heart is because God is giving him peace and the inside scoop. I pray everyday that is the case. Our cure is coming… Another CF mom I’m in contact with wrote this today and I’m stealing it.

I believe that today would make a great day to find a cure Tomorrow would be okay too! Yesterday would have been even better!!!

4am Ginger wakes up- We do enzymes in apple sauce, diaper change and I bring her into our bed to snuggle and nurse.

Between 7 &9am She wakes up for the day, diaper change, enzymes and milk.

8am I put Ginger in her walker and wash/sanitize her nebulizer. While it is drying I do all the dishes and clean up from dinner the night before.

8:30 diaper change, enzymes, and oatmeal for Ginger-roo.

9:30am Albuterol then Hyper Saline (breathing treatment takes about 40 minutes) Trying to keep a mask on a baby this long is a challenge. I put on Curious George or Sesame Street and stand in front of the TV with her in one arm and the mask in the other. I dance and sing to whole time. This is getting increasingly hard as she gains weight. After breathing treatments comes “clapping” or chest PT. This is a rubber cup that you pound on their back and chest where the ribs are. This last 10 minutes. The back she does not mind but the chest she struggles through.

11:30am Enzyme with applesauce and nurse to sleep. This is when I try to get some house work done or sneak in a much needed nap with her…

12 Ginger gets a bath and dressed for the day. I get ready after her and we brush our hair and teeth together. She loves that part. Oh man she SMILES! I tell her what a big girl! SO cute.

1:30pm Enzymes with applesauce and lunch -clean up

3:30 or 4pm Enzymes and milk, then we do all her breathing treatments again (Albuterol, Hyper Saline, and Clapping)

5pm Derek gets home and we try to go on a walk together. She loves the fresh air and we talk about our day.

6:30pm Dinner (you guessed it starts with enzymes and applesauce) Dinner we add salt, the same amount as the little packets you get with french fries.  A dose of Aquadek vitamins, for the vitamins her body has trouble absorbing. I take my supplements to keep her iron up.  (Derek is so sweet he makes dinner while I do all her stuff. I don’t know what I’d do without him. He’s amazing.)

8 to 9pm She falls asleep. Sometimes for the night and sometimes until 1 am when we would do enzymes and applesauce and nurse back to sleep…

We do enzymes with apple sauce between 7 and 10 times a day. The enzymes last for 1 hour and she has to take them before she eats anything, in order to absorb it. A child with CF needs about double the calories of a normal child, so we eat often.

So that is a day in our home. Here is a picture of all the medical things we do in just one day.

Romans 15:13 (New International Version)

¹³May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

This made me smile tonight. Just passing it on. I’m SO hopeful!