Almost One.

The girls are almost one! As it always does, it seems like both an eternity and an instant since they were born. Alexis continues to be a smiley and happy baby. She is crawling, crusing, and has a vocabulary consisting of one very important word, "Dada." Yes mothers I know its unfair. There is just something about the bond between a father and a daughter or.... maybe its just easier to say.

Bailey has had both an EEG and an MRI in the past few weeks. The EEG was the result of her seizures increasing in both frequency and duration. We continue to try new medications in an attempt to find the right balance to control her epilepsy without resulting in other adverse side effects.

The MRI was completed as she approaches one year of age to allow a comparison of the images with the initial images that were taken shortly after birth. Unfortunately the MRI did not offer any signs of positive development. So we continue to live life and love our brave and strong little Bailey AKA Bo (Alexis is Lu). We pray and long for her to be comfortable and at peace.

Thank you for your Presence, Plates and a Perfect Package

We are continually reminded of Gods promise of enough as we receive little reminders of his care through those around us. Thank you to the friend who brought over a stack of plates knowing that sometimes you just need to break something. Thank you to the thoughtful family for a package of incredibly soft stuffed animals that unexpectedly arrived on a perfect day distracting the older kids. Thank you to a special friend who gets it for the presence and prayer.

Bailey is Doing Better!

Last week all of our kids, like most of the rest of the world, got upper respiratory infections. With the additional mucus Bailey ended up aspirating and was running a high fever. As a result of the fever she had prolonged seizures for a few days. We are happy to report that after a few rough days she is doing better. She is on an antibiotic and we are doing breathing treatments twice a day with a nebulizer.

we remember....

On December 9th, 2004 our dear friends Ben and Jaren Nash lost their precious first born son, Jack Benjamin Nash. Two days after this indescribably painful loss we sat with them in their living room listening to them share their story. They told us they could choose to become bitter or better, and they said they choose better. We have watched them live this out. Thank you for being so real and authentic, and demonstrating that in the most difficult of circumstances we can become better. We love you, we cry for you, and we remember.

Giving Thanks

It's been much to long since our last post. The last month and a half has definately had it's challenges. Bailey continues to have seizures, and still show many signs of discomfort and pain, she is also still struggling with sleep which means Matt and I are as well. Life has seemed incredibly difficult and dark for me personally, but I was reminded today just how blessed Matt and I are to have such amazing family and friends who continue to support us in this difficult journey. I am giving thanks for all of you, thank you for caring and loving us through this.

I pray that you will have a meaningful time of giving thanks for the many blessings in your life over Thanksgiving. We will try to post some more specific updates on how we are after Thanksgiving.

I choose.....BEAUTIFUL!!

I'm not the best communicator but none the less i wanted to share with you what God has been teaching me through my children and especially Bailey during the past weeks.
... On september 14th Bailey had her pediatric opthamology appointment. During our visit the doctor performed a series of tests on Bailey in order to determine how much her vision was affected by her brain injury. Unfortunately Bailey's vision has been greatly affected and she is considered legally blind. Although this wasn't a huge suprise to Matt and I, there is still intense sorrow that goes along with this news. I have felt discouraged, hopeless, angry, and sad that my precious Bailey may never see our faces, or smiles. Bailey will probably never taste ice cream, or eat strawberries, she may never be able to tell me how she is feeling, sing "Jesus loves me," or say "MOM," she will most likely never walk, ride a bike, or dance around with her brother and sisters. However, in the midst of this grief Bailey is giving me a new perspective and is showing me what beautiful really is.
...There are a number of moments throughout my day when it is easy to become frustrated. For instance when Carter and Mckenzie track in mud for the third time that day, or when they spill their spaghetti on the floor, or voice their strong will/opinions (which are typically different from mine) in very loud and passionate ways. Because of Bailey I realize there is beauty in these moments. Carter and McKenzie are able to play in the mud, they are able to eat orally, they can eat things like spaghetti, or ice cream, or strawberries. They are also able to talk and reason and express their opinions. As frustrating as these moments as a mother can be, I would give anything for Bailey to be able to do these things.
...Thank you Bailey for teaching me to see the beauty in things, and for helping me to become a better Mom! You are truly BEAUTIFUL!!

drops like stars...

*i wrote this entry in my own blog a couple of weeks ago and asked

heather if i could post it here...thank you for your authentic selves.  -ben & jaren

i have been profoundly impacted by my dear friend, 

heather and her story.  

her life.  her authentic self.

she and her husband have 4 children under the age of 4.  

one of her twin daughters suffered significant brain damage at birth.

life has significantly changed in their home.

i was able to sit across from her this morning at panera 

and listen to new parts of her story.  

not pretty parts.

indescribably difficult, painful parts.  

the kind of parts where

the words that start to describe it 

can do nothing else but take your

breath away.  

as i listened and grieved these new parts with her...in my mind i wanted

to insulate her...protect her from feeling any more of this ache.  and it 

hit me that if that was even possible, it would keep her from experiencing

some of the most intimate moments that she has had with her Savior.

i saw the most beautiful in her.  

she, in the midst of her sorrow was shining.

{and not the kind that is trying to be -optimistic, positive--blah!}  

it was a true shining all the way through. 

it permeated her.  

and i realized it was because i was seeing the Most High.  

i saw that He was meeting her where she was at...and she was letting Him.

i saw the genuine and the real alongside

seeing the most painful parts that she and her husband are now walking through. 

  

i guess that is why i am up writing this at 4:00 in the morning.  

i couldn't sleep-not without doing something

about my experience today...i couldn't let it go unnoted. 

she lent me this book...drops like stars by rob bell.  she mentioned that it was like a coffee table-kind-of-book and it would take no less than 30 minutes to read.

as soon as i got home, i opened it and read it.  

i couldn't put it down.  i gave it to ben and he said the same thing.

we could relate to it on so many different

levels.  

it is the most accurate to placing words and 

experiences to suffering and loss that i have ever come across.

if you are finding yourself in a place of suffering, or know someone else who is..this book may be a great gift for

you or someone you care about.