Praising Him!!!!

"You will not fear the terror of night, nor the arrow that flies by day". Psalm 91:5

God brought me to these verses yesterday and I remember thinking I have been doing the very opposite. My fears would start to set in around 10 pm knowing what would probably await me in the night hours. I remember praying, "Lord, only you can help me not to fear the night and the pain that comes with it." Well, last night my legs and ankles swelled so much that I just knew I was in for a long night and I was fully prepared for "battle". I woke up at 7 am almost in a panic wondering how I had slept that long............because I slept pain free for the first time in a week! PRAISE THE LORD!!!!! I was able to get out of bed and walk and even attend the first day of MOMS (it's this great women's group I go to every week!) My legs and ankles are still if not more swelled but praise the Lord I slept pain free! I had tears of joy telling my friends at MOMS that the Lord was soooo gracious to give me rest. PRAISE HIM!!!

Thank you for your prayers!

"He will cover you with his feathers, and under His wings you will find refuge; His faithfulness will be your shield and rampart." Psalm 91:4

Today's Mercies for Today's Troubles

It's been a rough couple of days but God is faithful and He has showed Himself through His Word that He is right here with me. I just happen to come across a sermon that Callie was reading and it was exactly what I needed to here. Please take the time to read this very powerful message of God's mercies for today's troubles. Here are a couple of good points in the message~ http://www.desiringgod.org/ResourceLibrary/TopicIndex/32_Suffering/867_Todays_Mercies_for_Todays_Troubles/

• So we must not compound today's load with fretting over tomorrow's. We must not doubt God and say, "I have no more strength; so tomorrow will be impossible to live." That's not true. You will not be asked to live tomorrow on today's strength. What you need today is not tomorrow's strength, but today's faith that tomorrow's mercies will be new and will be enough.
• Today's mercies for today's troubles; tomorrow's mercies for tomorrow's troubles. "As your days so shall your strength be" (Deuteronomy 33:25). Don't be anxious about tomorrow. The troubles and the mercies are appointed day by day.
• The second was that there is fresh mercy from God for each day's appointed pain. Today's mercies are not designed to carry tomorrow's burdens. There will be mercies tomorrow for that. Today's mercies are for today's burdens.

I'm not sure how long this will last nor do the doctors. I pray this will pass as I can't imagine living like this forever. I hope not to have to go back into the hospital but we just take one day at a time and like this sermon said God gives us enough mercy for that day. Nothing much has changed as far as the pain other then the fact that I am very swollen all over (legs, ankles, feet, wrists, face, & stomach). I'm not sure what is causing me to swell up but I guess it is just part of this strange side effect. Jason took a picture of me earlier today and I thought I would share it with you.........

I wish I could say just kidding but it's not too far from the truth....=)

We did have a good birthday for Callie though. I wish we could have done more but I think Callie had a good time. Jason cooked out and made a wonderful birthday dinner!

20!!!! It's hard to believe my little sister is 20!

The girls!

It's good to be home with my sweet girl

Thank you so much for the comments, words of encouragement. Your dedication to praying for us and lifting us up means so much to me. It challenges me every time to do the same. Now I understand why God doesn't ever want you to journey the Christian life alone, you need the encouragement, example, and support of fellow Christians. So, thank you for challenging me as well as cheering me on.

The Lord's lovingkindnesses indeed never cease, for his compassions never fail. They are new every morning; great is Thy faithfulness. Lamentations 3:22-23

Conflicted

I was discharged yesterday and spent my first night home in a while. The doctors felt there was nothing else that could be done and it is just a matter of time for this to resolve itself. Although I love being home I was reluctant to go home only because I knew the pain I would be in. I was of course, put on some pain medicine and Motrin to help with the inflammation and pain. I have to get a nap in the day because I know the nights don't bring much sleep. My pain always gets worse without fail around midnight and continues throughout the night as well as not able to walk (I needed help to the bathroom again. My knees, legs, & ankles can't bare my weight due to the swelling and pain) Anyway, as you might be able to tell I'm struggling emotionally today and feel overwhelmed in many area's of life right now. As much as I ask for your prayers for healing please pray for me/us emotionally. I know God has a plan through all of this but it's just hard to see that this morning and have hope when your body is always hurting and changing.

Today is Callie's 20th birthday so I'm going to try to put away my petty emotions and focus on her and her special day! She has been so amazing to help us out and not to mention she is an AMAZING woman, sister, aunt (Ya-Ya) and friend and I'm so excited for her and Hayden!

HAPPY BIRTHDAY CAL! (YA-YA!)

Priceless Pictures

They say a picture is worth a thousand words so here are some pictures to describe our Sunday afternoon or a very normal day in the hospital. =)

Sleep whenever you can.......

Our favorite game to play in the hospital (too bad for Jason that I beat him most of the time, hehe)

the TV has only one channel..........The Olympics!!! (Or we just choose to keep it on 24/7)

What I tend to look like in the morning (drugged) when I finally am able to get some sleep after another long night of pain in my joints. (This picture is staged.....although I'm not entirely sure I look any better if it were a true shot)

Of course, a healthy stash of snacks to eat throughout the day (we really don't eat this bad but as you can see I threw in the MiraLax just in case, hehe)

A nice Sunday stroll around the nurses desk (work off all those healthy snacks)

So the things to do in the hospital are endless. =) I guess it wouldn't be hospital with an update so here is the update~ My joint pain continues to hit a new joint every night and last night was another long ordeal trying to find some relief from it all. The MRI came back clear (praise God) so they are now pretty certain this is a rare side effect (inflammation in my joints) from the Thymo. If I could get my night pain to a manageable place with a low dose of pain meds then I could go home but so far that has not been the case. We were joking that maybe we can go home in the day and just spend the night in the hospital (when it is worse). We just continue to take one day at a time and see how everything goes.

Praises~

• My lungs are doing good!
• Callie is here to help with Faith as well as our good friends
• When I say I'm in my second home that IS a good thing in the fact that I know the wonderful nurses and doctors (second family) and know the floor inside and out.
• A family (a CF/transplant guy who we have befriended) is up here due to some complications and we have been able to pray for them and kind of walk through this together
• My MRI came back clear
• I've been able to spend some good time with the Lord

Well, I better get back to my fun, Sunday activities but we pray tonight will be a healing one. Hope you and your families are doing well!

"For the Lord your God has blessed you in all the work of your hands. He knows your going through this great wilderness. These forty years (or 25 years in my case) the Lord your God has been with you. You have lacked nothing." Deut. 2:2

Hey, from my second home

Well, I wish I could say I had a better night but we pretty much repeated the same scenario as the night before with pain in my legs and running up to UAB early in the morning. So.....I am staying till we find out the problem. I had a MRI this afternoon for both of my knees and we should know something in the morning, however the doctors are now feeling it is related to the Thymo treatment I was receiving. They said it is uncommon for something like this to happen but not totally out of the question (I just happen to be the odd ball, hehe). We do pray that this is the cause of my pain because it should clear up over time (not sure how long) now that I have stopped the Thymo.
Thank you for your prayers as I was able to get some relief and even some MUCH needed rest. We (including the doctors) are interested and curious to see how tonight goes but at least I will be in the hospital were they can manage my pain if need be and maybe get some sleep.

Jason went home for a while today to be with Faith and took her swimming so that was great for them both! They did come visit mama tonight and we now know Faith knows the hospital is mama's second home because Jason said as soon as they walked into the hospital she said, "Mama....mama". =)

Sweet baby.......

A long week

I don't have much energy left but I wanted to give everyone an update on our crazy week. I finished my round of Thymo treatment yesterday and although it went well it has left me very drained. We were looking forward to sleeping in and just being with Faith and Callie since we have been away from them for the past 3 days but I woke up around 4 am in horrible pain in my ankles which moved up through my legs into my knees. I took some pain medicine but it did not even touch the pain and after hours of not getting any relief we had no choice but to head back to UAB to get help. I was not able to stand or walk because of the pain so Jason had to carry me to the car and by the time we reached UAB I was ready to pass out due to my pain. Once we got there my doctor removed some fluid from my knee as well as take some blood in hopes to find out what could be wrong. Dr. Young was pretty curtain my problem had nothing to do with my recent treatments but yet he wasn't sure what could cause this. They have now ruled out the more critical things which is great but they want to do an MRI to confirm what they believe might be some time of arthritis. It was another long day and once again we were able to just barely get home before Faith headed to bed. I think she thinks mom and dad have left her this week and her hugs are so tight and kisses so sweet when we do come home. Praise the Lord though that Callie has been here with Faith, Ya-Ya (Callie) is pretty special!

It has been a very long, full week and has left Jason and I pretty drained. We know the first year after transplant seems to be the hardest due to all the changes that go on with your body and we are beginning to see that through our own experiences and watching our new friends (other CF, transplant families) go through tough times too. Although we are ready for a season of rest we are thankful for these new lungs and second chance. It's been a rough journey but we have been blessed in so many ways and God continues to extend His grace to us.

Well, I'm sorry if this post is a little scattered as my thoughts are not quite all together but I appreciate you all keeping up with us and of course your prayers!

"For when I am weak, then I am strong." 2 Cor. 12:10

Monday Update

Well we got to go home last night which was great to be back with Faith and in my own bed but we are back up here doing my treatment again. We will have 2 more days of my Thymo treatment and then have another bronchoscopy in a month to see if it helped knock down the rejection. My sister is here with us so that is a huge help with taking care of Faith while we finish my treatments. I know God has many blessings in store for all of our friends & family who have served us in so many ways. I got a letter today from someone I have never met but knows one of my friends and they have been keeping up with our blog. For them to take the time to write and give me some encouraging words and let me know they are praying for us brought tears to my eyes. Again I stand in awe of the amazing support God has provided for us and I again want to say THANK YOU!

Here are some pictures of Faith all dolled up. Although she put the bracelets up her legs and they got stuck so it took me a minute to figure out how to get them off. =) It's hard to believe she will be 2 next month!!! It seems like she is doing something new every day, keeps us on our toes!

Waiting is apart of Life.......

If I could tally up all the hours I've waited in medical waiting rooms I think it would be double the years I've been alive. =) You learn very quickly to bring a book, computer, games, or something interesting to do because more then likely you will be sitting there for a good while. We got to the hospital around 9 am and waited in the ACT (the room on the HTICU where we waited to see if I would receive new lungs) all day to start my medicine. Now I will have to say I did feel sorry for the nurses because they were having a rough day. Around 11 am one of the heart patients unexpectedly coed and passed away. It was crazy with the over head pager going off to tell all nurses to come to that room and everyone rushing around. The reality of how life is so precious and that in one way or another each patient on the HTICU is hoping for a second chance at life and at the same time fighting for life. Jason and I spent some time praying for the family who just lost a loved one yet also rejoicing because a family we have come to know is finally going to be able to go home today! (We were waiting for the same lungs and I got them but he got his the next week! However he has had a very difficult time and has been in the hospital since June so we are thrilled he is doing well now!)
There were some other funny, crazy things (that's really all you can describe how yesterday went) that allowed us to have to wait so long. One being they were all full on the floor so I was waiting for a room to come available. Around 5 pm two rooms did but then I was told another patient would be taking my room because they had two patients with the same last name next to each other and they can't do that so I would need to wait for the other one to be cleaned. (That's one reason I love having Mulkey for a last name, usually don't get confused with someone else.) So to make a long story short I was able to get into my room around 7:30 pm and begin my meds. (Which takes 6 hours to finish)
Jason and I did enjoy hanging out together (he left around 4:30 pm to pick up Faith from our friends who had been taking care of her all day, THANKS SHAY!) and he always makes things more enjoyable. My nurse was explaining how this medicine wipes out my T-cells (cells that fight infection, they have to really lower my immune system more in hopes to stop my body from attacking the new lungs) and Jason said, "So, it's pretty much like "Rambo" going in with his machine gun and wiping everything out!" I was laughing so hard and told him you sure would have an interesting way of explaining procedures to patients, but then again maybe they would understand that better then the medical language. =)

Thank you for your prayers though so far things are going OK. We won't know if it is working against the rejection for a while but we just continue to pray for healing.

Our journey continues....

My journey thus far living with CF has been one with many mountains to climb but with the Lord's mercy and mighty strength I have had the awesome blessing of standing on top of the most amazing "mountain" tops. When I'm faced with yet another mountain to climb it can seem too big and I feel too tired but then the Lord reminds me just how beautiful it is when we get to the top. My bed time routine with Faith is probably my favorite time with her and tonight as I rocked her and sang our song (which now I have air to sing it! Our song is the Cuppy Cake song) I couldn't help but let my tears fall. Having a baby was a mount Everest that I was not suppose to be able to climb and the Lord was gracious to show me that with faith in Him, we can move mountains! I will never forget the relief and overwhelming joy when I first saw Faith, it's really beyond any words for me to describe.
Tomorrow I go in to the hospital for hopefully only a couple of days to start a round of medicine in hopes to stop this rejection that is continuing to be persistent. After I get out of the hospital we will continue to go back and forth to the clinic to do the medicine for maybe a week. One of my sweet nurses told me once that she feels God whisper every morning to her, "Do you trust me today?" and from there she has a choice to once again place her trust in the One who knows what she will face today. I have never forgot that and I too hear that answer being asked of me, "Do you trust me today?" and once again I say,"Yes, but please Lord, help my unbelief." He is always faithful......

We ask for your prayers that I would tolerate the medicine well and with that no other complications would arise. Pray this would stop the rejection. Pray for Jason as he takes care of his girls.... he just continues to amaze me how he just keeps going and always stays positive! He is another amazing blessing and my best friend. Prayers for Faith as once again mama is not around and it's hard for a toddler to understand our crazy life.

Again I stand in awe of how amazing our support has been and continues to be through our journey. Your words of encouragement and your prayers have given us the courage and strength as we have faced these mountains. Thanks for cheering us on and giving in many ways!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there and it will move. Nothing will be impossible for you." Mt. 17:20

Back Home to the Lone Star State!

Well.....I think I've given my lungs a good test to see just how well they will hold up in a fast pace life. Starting with us running a little behind (or what we & others call Mulkey standard time) to catch our flight out to TX, we had to speed walk with me pushing Faith in the stroller & carrying my hand bag. I'm excited to say I made it without any stops to catch my breath. It felt as if we were traveling too light without my heavy chest vest, nebulizer, cold meds and oxygen. It was nice to not have to explain to the security what my chest vest was. =) As I said before it has been 2 years since I last went home and so from the moment we landed to the time we left it was none stop seeing family & friends as well as getting ready for my mom's wedding! Being able to travel again and going home was the greatest feeling, almost like letting a bird out of its cage. Although it was wild and crazy we loved seeing everyone and am so thankful we were able to go. The wedding was beautiful and we are excited to have Darryl apart of the family.

Prayer~ I will have another bronchoscopy tomorrow (Monday) to check for rejection/infection again. We pray the round of meds I did has cleared up the small rejection I had two weeks ago. Thank you for your prayers....

"Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my might rock, my refuge. Trust in him at all times, O people; pour out your hearts to him for God is our refuge". Ps. 62:5-8

We have many loved ones going through a difficult time and this is our prayer for them that they could rest in the Lord and know He is their strong rock and protection. He is ready to fight our battles and give rest when we cannot go another step.

Papa, we love you and we know the Lord is holding your hand.

My baby looks sooo grown up! Of course, for her first plane ride I had to get her, her own back pack......and it had to be a Dora back pack! (Dora the Explorer is her favorite show!) Although I think I stuffed it too full with books and the first time I put it on her she fell back wards! She was very proud of her own bag to carry.

Although she is yawning in the picture she really does think Darryl is lots of fun.

She was reunited with her long lost boyfriend, they have been separated over the summer =)
FLASH NEWS!! We are all excited because Hayden will now be also apart of our family as he purposed to Callie last week! They will probably be married this December over winter break.

Back with my Ya Ya (Aunt Callie)

Faith did not get a nap the day of the wedding so she was not in the mood to take pictures but she made a beautiful flower girl!

She wasn't into walking down the aisle by herself so mama helped out. Nor did she like just throwing the petals and not being able to pick them back up. Being a flower girl is such hard work....
My mom looked very beautiful!

Faith loved being with her cousins, Josh & Marin (Dave & Melissa's children)! They danced all night!

One last picture for the night....we always forget about the family pictures till we are all tired and pooped!

Many cousins to play with and eat ice cream at Nana's (my mom) and Darryl's Ice Cream Shop! Here are Brandon (Jason's brother) & Christie's children; Jane, Tom, Jake, Peter & Sissy (their foster baby girl). We are excited about two new nieces due in November (That will make 6 for Brandon's family & 3 for Melissas)!

Here is a video of the kids dancing or should I say doing the splits at the wedding. Faith is very much into doing splits these days.