Hanging on.....

Once again I apologize for not staying in better touch, one of my excuses is that AT&T can not get their act together and get us going with our Internet so I've been going over to my sister in-laws house to check my e-mail. Besides that our life has been very busy crazy with Christmas, 4 birthdays, family staying at our house during Christmas and trying to get settled into our new house. Our Christmas was a very nice one and it was a breath of fresh air to be able to spend it with all our family and not in the hospital. However, I am back in the hospital this week. I've never really felt better since my last visit to the hospital and I've just continued to get worse. I'm coughing a lot, shortness of breath and pain in my chest. They think they might have found a fungus in my lungs but they are also not sure if it is really effecting me. The treatment to help this fungus is very toxic and hard on the liver and kidneys so they don't want to do the treatment unless they have a better understanding of how it might be effecting me. They plan to do another bronchoscopy tomorrow but as of right now they don't have any answers for the way I'm feeling. It's been frustrating and discouraging as I feel like I am back to where I was before transplant. I'm not sure if the H1N1 has damaged my lungs permanently or if this is something I can get over. I'm not sure what God's plan is in all of this and we just continue to ask for wisdom and grace. Please pray we would have peace and joy in this situation. Thanks...

Ok, on to more interesting news..........
I thought I would share Faith's most recent adventure..........hanging on.....at least to the garage door! The other day we were headed out and as we walked to the car to load up I pushed the garage door button to open it and walked around the car. Faith ran the other way around the car and before I got to the car door she began to scream! I had no idea what had happened so I rushed to the back of the car and couldn't believe what I saw! My daughter had grabbed the garage door and it had pulled her up and she was hanging in mid-air. She was not about to let go and her little hands were hurting from holding on. I grabbed her and after comforting her began to explain that we never do that because you will fall not to mention could break the door! So now every time we go into the garage she says, "I have to be careful of the garage." I'm just glad it was our 8 ft high door and not the middle door that is 14 feet high!

Also, we ended 2009 with a bang! I'm so proud of Jason and Brandon (my brother in-law) for working so hard to meet their goal in the Chick-Fil-A business. We are ranked the #1 Chick-Fil-A in the chain! We had the strangest Christmas because it snowed (we never get snow around Christmas) for several days and it really killed our sales so we weren't sure if we were going to make the goal but somehow by God's grace the last two days of December we were busy crazy and made it! Very proud of them!!!

Well, I promise I'll get a picture up soon of our house but we have really enjoyed it and it's more then I deserve or could hope for. Hope you had a wonderful Christmas and that 2010 has started out on a good foot for you.

Going Home

I'm getting out of the hospital today! I'm still not where I need to be but I can do my IVs and treatments at home..............our new home! I still appreciate your prayers as I continue to try to get well but very thankful to be going home.

We also have some other great news. Brandon and Christie (my brother & sister in-law) were able to finally adopt Georgia (Sissy)! It's been quite a journey trying to keep her but we are so thankful the Lord provided the way for her to officially be apart of our family! Georgia and Faith sure are good buddies so it's a huge blessing to have a good cousin close in age. Our new house is right by Brandon & Christies so I'm sure they will be playing all the time now. =) We love you, Georgia!!

Success

Thanks for your prayers......they were able to get the PICC in! The PICC sure saves me from lots of sticks! I'm going to really try to get out tomorrow and go home on IVs, I'm hopeful my doctor will agree. Yes, Katey my doctor here wants me to get a port but they won't do it while I'm sick so I have to get over this and then I'll come in to get one put in. Most people are surprised that I don't have one but it's only because I've never wanted one and held out this long but with being in the hospital so often it probably is the right step to take. Anyway, thank you again for your prayers and I'll let you know what the plans are for going home.

Pray for success with PICC

It looks like I will continue my hospital stay possibly through the weekend. I'm feeling a little better but not a huge improvement right now. Also my veins are pretty used up and my arms are sore and black and blue due to all the IVs this week so I think they are going to try to put in a PICC line because I'm running out of options for an IV access. As you know it's never easy to put IVs or PICC lines in so I would really appreciate your prayers for that. I'm not sure when they will be trying to get one in today but I'm hopeful it is soon as I haven't had a working IV since 5 this morning. I am so ready to be home and I'm hopeful that if they can get this PICC in then I can go home on IVs.



Please continue to pray for my sweet hubby as he has so much on his plate right now. Our CFA store is trying to hit our goal of 6 million (we would be the first store to accomplish this). So between trying to work at the store, living between houses, caring for Faith (our family is helping a lot with her) and me and finishing little things on the new house, it getting to be a little overwhelming.

Thanks for your prayers and I'll let you know how today goes.

A good place to start....

Hmmm, either the Lord in some way (which I can't imagine) finds me faithful and so I continue in these physical trails OR I'm not learning my lesson and so I have to re-take the class over and over again. Whatever the reason my be, I'm continuing in this season or valley of sickness and it's been difficult to "praise the Lord". Although I've never been strong physically, the Lord has always provided a strong fighter in me mentally and I think that has helped me get through many things. When I had the H1N1 flu this summer the doctors and nurses were very surprised at how much sedation I needed to keep me in a "coma" to be still. But, they reassured my husband that was also a good thing because I was fighting. Although it's been very difficult physically I feel like Satan has attacked me mentally this round and more then I would like to admit I have let him whisper lies of defeat. I've tried to write down the blessings in my life during the hard times so I can focus on that instead but I have not done it this time around but Emily T. reminded me that it would be a good place to start for my mind and heart.


Romans 12:21 ~ Be not overcome of evil, but overcome evil with good.

I do believe speaking and writing out the word of God and the blessings He has given you is more powerful then just thinking it. You are putting into action overcoming evil with good. So here is a beginning list of what I'm thankful for. Maybe, you are having a tough month, year or Christmas season I encourage you to write your blessings either on your own or on my comment page so you can SEE there is always beauty even in the dessert.

I'm thankful for~
*My husband who is so patient with me and tenderly loves me through every season we have gone through.
*My daughter who gives me a reason to smile when I can't seem to find one. Her sweet voice when she tells me I'm going to get better and that she loves me gives me strength to fight for her
*All of my family and friends who pray for me, are patient with me when I'm not fun to be around and help Jason and I in so many ways!
*Our new house that I'm looking forward to living in
*The good conversations I have had with my brother, Tyler while I've been in the hospital. I'm not sure if we would have had them other wise.
*Not dealing with rejection right now
*My new red wig, hehe
*The Lord prolonging my life this long and how He has been able to use my CF to help others.
*My dear, sweet friend Emily.....my angel who knows me so well and for some reason still loves me and stands by me through thick and thin.
*My family who cheer me on and give so much to me
*The Lord giving me new lungs to live with
*The Lord never giving up on me
*and to all of you who follow our journey through this blog. You prayers and encouragement are so uplifting to us.

Tuesday update

Well, I don't have a lot to report. It doesn't look like rejection at this time but they are sending the reports to another lab to make sure. They believe it is a pseudomonas, pneumonia. For those of you who know my CF history pseudomonas is the main problem I had. I could never fully get rid of it and it caused much scare tissue. Anyway, I don't really know how this all plays out with my new lungs but it definitely is growing in my lungs and causing pain, low oxygen and coughing. I am on IV antibiotics right now but as of right now they don't seem to be doing very much in helping knock this out. It's been a frustrating and draining time for the both of us. My body is worn out and at times I don't know just how much more it can take but like we have seen before God can still do miracles.

I'll update anything new as we hear.

Back to the hospital we go....

Just wanted to give everyone a quick update. I was admitted back into the hospital on Friday due to coughing and low oxygen. The doctor did a bronchoscopy on me yesterday but we probably won't know the results till Monday or sometime this week. My transplant doctors seem to think it's some kind of infection however my doctor here thinks it might be rejection. They have started me on 3 antibiotics but it's too early to really tell if they are working or not.

Jason and friends and family moved most of our stuff into the new house on Friday, which was nice to get done. Our holidays never seem to be normal or easy and this year is proving to be no different. I know it's a small thing but I haven't been able to put up my Christmas stuff or go buy a tree this year because we were trying to get moved in and now with me being in the hospital I'm not sure if it will get done. I love doing Christmas things with Faith so it's been hard. As always I pray that this is not my last Christmas either. There has been a lot going on I think we are all ready for a season of rest.

Well, I will give an update as we get them. We appreciate your prayers......

*I shared this story on my facebook but I thought I would go ahead and tell it again for those who are not on facebook. It's fun to see Faith grow in her understanding of things and have more in depth conversations with her. However, I'm not always ready for what may come out of that little mouth.............. We were rushing around trying to get out the door and Faith was not obeying and moving at the speed of a snail and I lost it and snapped at her. As we drove to our destination, I was frustrated with myself for snapping at her and I knew I needed to make amends. I very calmly apologized and waited for her response.......and this is what I got.

Faith: "I not talking to you.......you need to go in time out!" Though she was probably right I needed to take a time out, her response caught me off guard and it was hard not to laugh.

Oh my........RED!

Yep, you guessed it........I am now a red head! I never thought I would change my hair color but as I'm finding out life has lots of unexpected turns. My mom and I went last week to the wig store and when we got there she asked me what style or color I was thinking. When I told her I wanted to see what red would look like she was quite shocked and I could tell she thought I was a little crazy BUT when I tried one on she changed her tune very quickly. It was even more interesting when I tried on a blonde one and we both thought it washed me out and that the red really looked better with my skin color and eyes. With my new do, I thought we should head over to the CFA and see if my husband noticed me. When we pulled up to the store, he was standing out in the parking lot and so Faith, my mom and I started walking toward him. He looked at me and quickly turned around but after hearing Faith say, "daddy! daddy!" he turned around again and you could see he was confused to see his daughter...... but with a red haired lady. It didn't take him too long to figure out his daughter had not been kidnapped by a strange woman and he got a big smile and kept saying, "wow....oh my goodness......wow.....you look so great.....I can't believe you really went red!" (If you remember from my last post Jason has always liked red heads so I probably never would have done it if it weren't for him) =)

So, for the rest of the day I enjoyed showing off my new do. I gave my sister in-law, Christie, quite a shock as I walked into her house and she thought, "who is this strange woman just walking into my house!" It's been quite humorous walking up to my family and friends not acting like anything is different and they looking at me like I'm some stranger that knows them but they don't have a clue who this person is. I about gave my brother a heart-attack when he walked into my house and I was cleaning dishes and all he saw was me from behind. He said he had to make sure he was in the right house or confront some stranger in my house. Over all I think most people like it and I have really enjoyed it. So, if my hair comes back maybe I will have to turn it red. I told Jason the red unfortunately matches my temper better then blonde so maybe I was suppose to be a red head all along. ;)

*We have had some unexpected problems come up with the house so we weren't able to close on Monday but hopefully we will this week and move maybe over this weekend. I'm so ready to get in so I can put up our Christmas stuff. I'll try to get a picture of it up so you can see how it looks now!

Proverbs 31:30

We are still here! I'm sorry I haven't written in a while. I would like to just say we have been too busy for me to write but that's not the whole truth. I've been avoiding my blog and having to talk about my struggle and attitude of recent. Never could have I imagined how God would use this blog to not only keep family and friends connected with us but teach me so much about what it means to walk with him as I expose my weaknesses and a constant need of a Savior. So before I begin to explain my absent I just want to thank all of you who read this and thank you for letting me be real and honest with you.



My body has gone through many changes due to my CF and transplant and although I have excepted many of them I was not ready for what was in store for me this fall. Due to catching the swine flu this summer and the toll it took on my body I began to loose my once long, thick hair. I have always been thankful for my hair. I would always say it was the healthiest thing I had and if you asked any of my friends who cut my hair they would tell you they have NEVER known anyone that had such thick hair. Whatever pounds I was lacking on my body I made up for it with my hair. =) It began falling out in September but the doctors felt like it would stop as I regained my strength. However, so far that has not been the case. I spent most of last week in the hospital due to pneumonia and the continual stress on my body caused my hair to really come out. As I lay in bed during my hospital stay I could tell my hair was thinning a lot and I couldn't bare to look in the mirror, and as I fell into depression the Lord kept whispering Proverbs 31:30. "Charm is deceitful, and beauty is fleeting, but a woman who fears the Lord is to be praised." I did NOT want to hear that verse and I pushed away what the Lord was trying to say! I was angry, WHY?! After, all that I had gone through why couldn't have the Lord just let me keep one thing I treasured. I got out of the hospital Wednesday afternoon and I was so embarrassed and angry that I chose to not be with my family on Thanksgiving Day. I wanted to sleep and hide away and so Faith went over to my sister in-laws house and spent Thanksgiving with all of our family while my sweet husband stayed home with me.

Not only did I miss being with our family this Thanksgiving and being far from having a thankful heart for what I did have, I didn't want to see what God was so gently trying to help me see. The truth was He did care about every hair that fell from my head because He not only did He give me all that hair, He knows the number of them (Mt 10:30). Although that had been stripped, He thought I was still beautiful because I am still His child and He was using something in my life to help my heart become more like His. Because, like in Proverbs 31:30, He knows things in this life can be fleeting and He is faithful in helping me become the woman He talks about in this verse. I am far from being the Proverbs 31 woman but with tears and a surrendered heart I can honestly say I pray that maybe...... just maybe my willing heart and faithful Lord will help me become such a woman.

I am getting better from my pneumonia and I am in the midst of trying to get over a stomach bug too but with all that said I am doing better. So, what is my plan from here......well, tomorrow I am going with my mom to possibly find a wig. So, the next time you see a picture of me who knows what I'll look like. =) For all of those of you who know me well, you know it was a HUGE deal for me to start getting highlights, you could say I'm not a risk taker when it comes to my hair but NOW the possibilities of style and color are endless. Jason has always had a thing for red heads so maybe that's in the near future for me.....hmmm......who knows? =)

If you could keep us in your prayers this week as I try to get over this sickness and pack up my house because we could possibly be moving into our new house this weekend! Thank you and I hope your Thanksgiving Day was a great one!

Princess Faith

Well Princess Faith finally had her princess party that she has been waiting for. We bought her a Cinderella dress for her birthday and if we let her I think she would wear it everyday. She puts it on and says," Oh wow, I look beautiful!" And for the past few weeks she tells me that she needs to go to the ball, so for her party we rented a big princess castle jumper. She thought that was pretty special.

Princess Faith

Beautiful princesses~ Georgia (Sissy), Marin & Faith OR

should I say Snow White and 2 Cinderellas

She loved her castle cake with all the Disney princesses

It's hard to believe my little one is 3 years old already!!! My how time flies by so fast!

Princess Bike from Emily Mulkey on Vimeo.

Health update~

I'm doing pretty well. My strength is coming back and I've been able to gain some weight back. When I get tired I have to remind myself that I'm still recovering. I've been able to get back into my Teen Moms group, which I have missed. The next month or so should be a little crazy as we finish up the house and then hopefully be moving the beginning of December. We finally picked the color for the house and thank goodness it turned out great! I'll be posting some pictures up soon. Hope all is well with you during this fall season!