Big Helper

If you were to come to our house you would see this very normal, daily routine of me doing my treatments and my little helper there to assist. It's amazing how you become very good at multi-tasking when you have children and add CF to that and you have no choice but to become a super, creative, octopus (many arms)! I took a picture of the most my two hands can do as well as remember what I'm doing and finish everything. Here I have my oxygen on (which thankfully that doesn't require hands), doing my vest (helps break down my mucus. I do twice a day), also my breathing treatment (3 or 4 times a day), as well as doing my IVs while looking at books with Faith or playing games. My little helper is always kind enough to help show me where every plug, tube, and syringe goes and I have to say she is right 95% of the time. It only becomes a real challenge when she feels mama is having all the fun and wants to take a puff of my treatment or push in the saline to my IV. I wish I could explain to her how blessed she is not to be having all this "fun". Maybe someday soon I won't have to be doing these treatments too. I've told Jason thinking about being able to breath well again or not having to do my treatments that I've done daily for 24 years is like telling a paralyzed person they can now walk. Although we pray and hope for transplant we know it is defiantly not a cure and know more or less it is trading one disease for another. We just hope the things that come with transplant are easier then what it is now. We have no new updates with transplant and thankfully for the moment I'm off IVs. Since the last call we got was at Christmas, it is just very hard to know when we might get another call. Every time the phone (which our home phone doesn't ring much since we use our cells more) rings your heart skips a beat thinking it might be the call. We continue to pray it might be this summer!

"Wait for the Lord; be strong and take heart and wait for the Lord". Psalm 27:14

Papa & Mimi

We just got done enjoying a great week with Papa & Mimi in town! As you can tell Faith loved being the center of attention. We look forward to the day when we will live close to them again. Lord willing after transplant we will be moving back to TX and papa & mimi will be retiring the end of the year so we will be heading back to the town where all our family are. I have to say though I've been blessed with wonderful in-laws & Faith loves her mimi & papa!

She loved sitting with Papa one evening just listening to the rain

Mimi is always nice enough to share her tea, food & dessert because whatever Mimi is having Faith wants a bite too!

They got her a bubble gun & we spent a good awhile on the porch trying to catch all the bubbles! She loved it!

She got sooo close to catching one......or so she thought

Family Pictures

Family pictures tend to stress me out, I know it should not be a big deal but with my perfectionist side I get caught up in the details. There is the process of figuring out what everyone should wear and then sometimes having to go buy something if need be. Then you get everyone ready and pray you will make it to the photo shoot without spilling something, spitting up, (when you have little ones) or dirtying your clothes. You get there and do a one last hair, face, and clothes check and then pray your child will smile or at least just sit there for these pictures you have been planning for awhile. I'm getting tired just thinking about it all again. =)Anyway, after having to cancel Faith's pictures early in April due to her screaming and crying because she was scared of our friend, who was taking the pictures (I think she thought we were leaving her) , I knew I was not going to attempt that again! (At least for a time) However, another sweet friend who enjoys taking pictures offered to take our pictures out at her beautiful place. This time we would take family pictures and so Faith wouldn't have to sit by herself. =) To sum this all up I was proud of myself because I didn't get stressed out this time and just let go of any expectations. I would be thrilled to have just one turn out and much to my surprise we got more then one good shot.

So, even though it may be a quite an ordeal getting everyone ready for the big picture day, it is defiantly worth it to capture that sweet moment of your children or family. Thanks Jody, for doing a beautiful job! Here are a few of our favorites.....

A Dream......A Miracle

As long as I can remember I always wanted to have a child. It was a dream most people including myself didn't think would ever happen but I prayed for it, and on September 10, 2006 God gave me the miracle of becoming a mother to my beautiful baby girl. I remember holding her for the first time and thinking, "I can't believe she is mine. Is this really my baby? You are really going to let me take her home?" There are not enough words to describe what you feel when you hold your baby for the first time but it's a moment like none other. I really had a strong feeling we were going to have a girl and God had already chosen her name. I was reading a "Baby Name" book and as soon as I came across the name "Faith" I knew that was it! Jason and I never gave it a second thought. It was a step of faith everyday that I carried her, praying that I would not go into early labor, that she would grow healthy and strong, that I would stay healthy as well. It continues to be a step of faith as I'm always learning how to be a better mother and place the future in God's hands. I continue to pray that Faith will someday put her own trust and faith in her Maker, Savior, and Lord.

Faith has been everything I could have hoped for in a daughter and much more! She can be quite a firecracker (not sure where she gets her feisty spirit..... hmm...) but then has the sweetest spirit that shines through even at such a young age. She has brought much laughter to our home and joy in the midst of difficult times. It's hard to believe how fast time as flown by since she first entered into our lives and I've tried to treasure every moment we have had so far. I never could have imagined all the emotions, lessons and amazing journey that comes with being a mother and I'm forever thankful to the Lord for giving me the blessing of a dream come true.

You were just 5lbs 13oz with pretty dark hair and sweeter then sweet!

Never too young to start wearing sunglasses

Faith, you always make walking the halls at the hospital more fun

You are always the best medicine for mama

Beautiful baby girl

You love to go swimming!

Your 1st Birthday

We both need our naps

Mama loves to kiss you!

Love You!!!

Saying good-bye

Sorry it's been awhile since I last wrote on here. I've been trying to recover from my last hospital stay about a month ago now. The allergies have hit me hard this year and it has made it more difficult to bounce back. I also had to say good-bye to my sister as she has headed back home to TX for the summer. Although I'm very happy that she gets to go home and see friends and family and start a fun job, I will miss her company and support. My mom got to be here this week which was a great time and then she drove back with Callie. We had some good girl time!Pray that Jason will be able to keep up with his two girls by himself. (He does a great job!)

The end of this month will mark one year since I've been listed for transplant. Most everyone (including doctors) thought I would have been transplanted within a several months of being listed but we continue to pray and wait. I told my mom the other night I can see from my perspective why God has not allowed it to happen yet and for those blessings I'm very thankful. Just a couple of blessings in my wait are......

* Being able to be with my sister again & her being able to built a special relationship with Faith.

*Getting to spend time with Hayden (Callie's boyfriend). He is going to school several hours away and would come spend the weekends at our house which gave us a great opportunity to get to know him more. He is a great guy!

* Learning many lessons in my own personal walk with the Lord

* Glad Jason gets to be with us, spend lots of time together

* Have built good relationships with people here

I also think and often pray for my donor and their family and wonder how God might be working in their life right now. He might not be done with His plans for them and therefore His timing is always right. I have to remind myself of these blessings and truths or I find my emotions taking a ride on a roller coaster. I told Jason the other day, "I don't know how it's possible but I feel our life right now is so complicated but yet so simple." I guess I would have to write a book to elaborate on that thought but whether complicated or simple God continues to extend His grace when I need it (which is everyday).

Thanks for your comments, cards, & prayers.......Here are some pictures of Faith having a good time with Callie, Hayden, & my mom before they left. She is going to be bored with just Jason and I. =)

Love my Nana!

Faith loves Hayden. She thinks she is the girlfriend not Callie. She gets quite jealous if Callie puts her hand on Hayden's shoulder. Thank goodness Callie is willing to share him. =)

The girls!

Faith loves Hayden a little too much

Going to miss Aunt Callie

A must see

My grandma sent me this sermon that one of her pastors at her church taught. I watched it once by myself and then I watched it again with Jason and both times I couldn't get through it without tears coming down. Not only is it an amazing story of someone deciding to give another person life by becoming a donor it also paints the beautiful picture of what Christ really did for us at the cross. I strongly encourage you to take the time and watch this and be reminded of the sacrifice Christ made for you. Of course, this sermon touched me deeply because it was a story of someone giving others a second chance at life through a transplant but it has a message for everyone to hear. I would love to hear your thoughts (through e-mail or click the comments located at the bottom of this post) from who ever is able to watch this video. You will be blessed!

http://www.cornerstonechandler.com/
If this opens, select media and click on it
Look for the identity series and click on launch media player
Look for Salvation and click on sermon.
The sermon should start and the bottom of the screen has the controls for the media player

Home

Just wanted to let you all know we got home today about 2 this afternoon, Praise the Lord! The doctors were very gracious to work with me and let me come home and finish my meds at home. Although it is nice for a change to have other people do all the medical things for you (bring pills, do IVs, start breathing treatments) it is hard to be away from my baby. I think Faith was a little upset with me for leaving her this week because she gave me the cold shoulder when I got home (made me feel really great) but by the evening everything was normal again. =) We got to do our normal bed time routine and that made us both happy!

I will continue IVs for a while though. I feel tired and still have some pain (thankfully not as bad as Sunday) but that should get better as the medicine fights the infection down. Thanks for praying!
Here are some things Faith has been up too.....

Hanging upside down

I think I've mentioned how much Faith loves to put things around her neck (scary) but here she figured out that her head bands look much better around her neck then on her head. She looks like one of those woman in Africa with those rings around her neck. =)

All I have to say about this is at least it is a clean diaper!

Update

After a CT scan we found out that my lung has not collapsed but that it is probably an infection that is causing the shortness of breath and pain. I'm thankful to not be facing a chest tube at this time. I am on IV's right now but we have to wait till the cultures come back to show if they are sensitive to the infection or if I need to change meds. Besides the pain the week has gone pretty well and although I'm getting antsy to go home I'm not going to bring it up to the doctors until we get the cultures back. =)

Callie and Faith have been visitng everyday (Cal, is so sweet to drive back & forth) which I look forward too. I think it is confusing at times for Faith that Jason and I are not at home all the time but I know Cal is taking good care of her. Faith seems excited to sit on my lap in the bed though.......or maybe it's just because she gets to watch home movies of herself on the laptop. (See older post) It's hard to entertain a toddler in a very small room and try to keep her germ free.
Thanks for your prayers and for leaving comments and sending e-mails. It always brightens my day!

In the hospital

We were able to get away this last weekend to Atlanta to visit some friends, which was a really nice time. I haven't been able to go on a trip since July so I was very excited to get away and of course it is always great to see friends! However, the night that we came home I started having more pain in my chest and back (which is usually the sign I have an infection or my lung has collapsed) and by the next day it was pretty bad. So, we are in the hospital at UAB (my favorite place). I'm trying to have a more positive outlook then I did last time. For those of you who remember last time I had to spend a week in the hospital at UAB, it was a horrible, draining time. I'm thankful Callie is still here so she can take care of Faith. They will be coming down so we can spend time together.
We are praying the doctors will have wisdom on how to best treat me and then hopefully go home on IVs soon. We'll keep you updated on how the week goes......

I Love Myself

I think obsessed would best describe Faith's constant need to watch her self on the Tv, computer, cell phone, & camera. Don't get me wrong I would want to watch myself too if I was that cute. =) Even though we limit her to how much she "watches" of herself that does not detour her from trying to find where we have hidden the lap top. I think we forget she is getting older and now remembers where something use to be. She is quick to look at the places that we use to hide the lap top. When we would hear her coming through the hall we would quickly hide it under the covers, under the bed, under a pillow or in a drawer. However, she is way to smart for those hiding places now and so our level of hiding has had to go up a notch.

We have also quickly realized Faith is growing up in a very different era then we did. Her ability to understand technology and how it works is scary and yet amazing. I guess given the world we live in with technology changing every moment she will be learning things about computers etc. faster then we do now. To sum all this up Jason and I had a conversation that went something like this-

Faith was watching a video of herself on the computer and as soon as it ended she leans forward toward the computer with her finger about to push a button and Jason jumps up and says,"No, Faith, don't push buttons." I call from the other room, "It's OK, she knows which one to push to turn it back on." I guess I failed to mention to Jay, that our 17 month (at the time) knew how to keep her favorite show going.......home movies of herself. =)