Update on Shaun

Thank you for your prayers for Shaun and his family. I'm getting my updates through another transplant friend, Katey, and today she talked to Shaun's mom on the phone. This is part of the update she wrote on her blog about Shaun-


Many of you have been praying for my friend Shaun, who is critically ill right now. He's a CF/transplant patient, who has, for reasons unknown to us, taken a turn for the worse this last month. He's had setback after setback after setback, but each time stabilizing somewhat. As of Sunday, he had stabilized from his most recent set-back, and started to improve a little. Today is a different story.

I called his Mom earlier to find out that he was not doing well. His prognosis was not good, and there was nothing else the doctors could do for him. His left lung has now collapsed, and consequently, has 4 chest tubes. His O2 sats are 73/74. He is on full pressure vent settings, as much as possible. His poor little body is as swollen as can be! It's now basically a waiting game, to see if God's ready to take him home or perform a miracle and let him continue his life here on Earth.

As you can tell things have continued to look worse and they continue to need your prayers. Although he is not conscious I am believing God is right there with him, giving him peace and strength. It's difficult to think how full of life he was and now he is barely holding on. The Lord has been quietly reminding me to NEVER take life for granted. To LIVE each day to the fullest, to enjoy what the Lord has given, to cherish each moment and the relationships I have. Shaun always has a positive attitude about life and it shines where ever he goes. So as you pray for him, remember to~

• Kiss your children and tell them you love them
• Call that person that has been on your heart recently
• Do something special for your spouse
• Tell your friends how much their friendship means to you
• Give someone that compliment you have been thinking but haven't said
• Write someone a note of encouragement
• And share the Good News of the Gospel to someone you have thought about witnessing too, because there may not be another opportunity.

So then, as we have opportunity let us do good to everyone, and especially to those who are of the household of faith. Galatians 6:10

Please pray with me......

It's hard for me to even write this but my friend, Shaun, is in desperate need of your prayers. The first time I met Shaun we were both waiting in a room together for the same thing.....new lungs. We both had got the call on December 15, 2007 to come in for a possible match. We sat in the waiting room for at least 6 or 7 hours so we got to know each other pretty well. When they came in to tell us that Shaun would be receiving the new lungs I was very excited for him. He is so full of life and so animated in all he does that I just knew he would do well.

He did do very well up until this past month and for unknown reasons he took a huge turn for the worse. Now the doctors don't know if he will make it through the night or the week. Medically there is nothing more they can do for him, but I know the Lord is not limited by our boundaries and that He can still do a miracle if it is His will. It's so hard not to be able to be there to see him and his family. So please intercede for him and his family. Thank you......

This was taken last summer of me, Katey (also a transplant friend) and Shaun

"I look up to the hills, but where does my help come from? My help comes from the Lord, who made Heaven and earth". Psalm 121:1-2

"Let us, then, feel very sure that we can come before God's throne where there is grace. There we can receive mercy and grace to help us when we need it". Hebrews 4:16

GREAT STRIDES

Hopes or dreams were not much of a reality for people with Cystic Fibrosis when I was born, yet today not only are hopes and dreams coming true there are miracles! When I was diagnosed with Cystic Fibrosis at the age of 3 months old, the hope that I would ever live very long or have a normal life were small. Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States.

Though my journey with CF has been quite a battle to fight, I am thankful for the life I have and the many blessings I have been given. I have had the wonderful blessing of being a wife to an amazing man and in 2006 we found out we would be expecting our miracle baby. Faith, who is now 2 1/2 yrs. old is healthy, beautiful, fun and a joy to our family!

In 2007 I was put on the transplant list due to my failing lungs. My lung function at the time was 16 to 18%. It was a difficult year as I waited for some healthy lungs, but on June 8, 2008 I was given that miracle. A family that didn't even know me gave me a second chance at life. THANK YOU!!! I no longer have CF in my lungs yet I will always deal with the other issues that go along with CF (pancreas, sinus...etc). My journey with CF, and now as a transplant patient has been a rough road and I could not have done it without the amazing support of my family and friends. Over the years you all have given so much to us and we could never say thank you enough.
There has been great steps in furthering the quality of life for those with CF, yet there is STILL so much to be done. Until we hear the words "Cure Found" our mission is not done! Please consider making a gift that will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.

Making a donation is easy and secure! Just click the "Click to Donate" button on this page to go to make a donation that will be credited to my team. Any amount you can donate is greatly appreciated!

If you would also like to come out and be apart of the GREAT STRIDES walk with us, the walk will take place on Saturday, May 16th at LCU starting at 8:30 AM.

Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!

Many Blessings,

Emily Mulkey

Who Loves Chick-fil-A?!

My friend, Cynthia (who loves CFA), posted this on her facebook and I just thought it was GREAT!!! It always makes you feel good to hear people say they "Love Chick-fil-A!" It is an awesome company and we feel very blessed to be apart of it.
Chicken, waffle fries, sweet tea and a cow what more could you want?! =)


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P.S- Check out Tim Hawkins website. I have never heard him in person but I would love to attend one of his shows. His videos will keep you laughing!

Crazy Lady on the Loose!

I'm thankful the Lord has much grace for this crazy lady. I'm very excited to report the bronchoscopy went well and that there is NO signs of rejection or infection!!! This is a huge answer to prayer! I know so many of you were praying for me and I can't thank you enough for your support. I have done good after the bronch......well at least other then being a little on the crazy side! I am so thankful I did well after this one however I am starting to believe I am becoming more delirious and irritable the more bronchs I do.

For example my rump (or bottom) is sore due to getting a shot of Benadryl in the recovering room. My husband says I WAS persistent in them giving me some even though my IV was not working anymore and they would have to either start a new one or give me a shot in my rear end! OK, let me pause here to say I would NEVER have them start a new IV just for that nor would I want another shot, that is if I was sane!

I also called my sister later that afternoon (don't remember that either) and gave her a recipe that she was wanting (popcorn cake). I called her on Wednesday asking her what exactly I said to her because I had no idea and she said, "Well, the cake turned out great!" So, I guess I can give out recipe instructions by memory (which is a miracle) but can't remember the phone conversations. =)

Jason also said on the way home he needed to get some gas and I insisted that he not stop at this one exit and go down to the next one in which Jason knew it would be a ways till the next exit. So, I guess we were very much on the E when we pulled up to the gas station. I'm very thankful I married a VERY patient man.

Over all though we are rejoicing at the good report! It's been wonderful to catch up with friends here and get some things fixed on our house. We will head home on Saturday. Hope you and your families are doing well.

Tuesday update

Well, it has been a long day but praise God the bronchoscopy went well so far. We'll see how I do tonight, I'm just mainly tired. We go to clinic tomorrow to see the doctors but I'm not sure when we will get the results back from the bronch. Thank you for your prayers.

I did have a wonderful time being with Emily T. and her new sweet daughter, Savannah! I also was able to go visit my sister which was very awesome! So I got to drive all over the east and then I picked Jason and Faith up in Birmingham last night.

I'll try to give updates through out the week. Hope you all are doing well!

Just Me & Maggie

Just Me & Maggie from Emily Mulkey on Vimeo.

Tea Time! from Emily Mulkey on Vimeo.



For those of you who are wondering why Maggie has a split on (not because of her owners) it's because she is not walking on her leg the right way and so this split is helping her learn the correct way, before it gets worse.
Although Maggie & Faith have sweet moments Maggie can also be quite the little biter (puppy stage) so Faith runs from couch to couch trying to stay away. She will holler out "Scared....Maggie! Faith is very helpful though, she is already learning how to take care of a dog. She feeds Maggie 3 times a day. She will call, "Supper Supper Supper....Maggie!" We hope that they will grow up together being good buds.

You can be praying for us as I leave tomorrow for AL. I will be going out early (before my clinic stuff) so I can be with Emily T. and her NEW BABY GIRL, Savannah!So excited for them and the new journey they have begun!
Jason and Faith will fly out on Monday to be with me for my bronchoscopy on Tuesday and clinic on Wednesday. We thank you for your many prayers for us as we travel and I do my tests. I'll try to keep everyone updated on how things are going. Hope all is well with you and your families!

6 Years!

Jason and I celebrated our 6 year anniversary on the 15th. We were able to take a little weekend trip together, which was a great gift to both of us since it had been a while. (Last time we went on a trip together was 3 years ago when I was pregnant with Faith)

For those of you who have children you know the feeling of going anywhere for a long period of time without them. I find myself double checking where she might be and making sure I have a sippy cup, diapers, wipes & of course blanket. (If you forget blanket good luck in having a good night sleep!) hehe
I also find myself rushing through dinner so that I might finish before she does so I can keep her entertained for the rest of the meal which usually gets cut short anyway. And then, knowing your alarm clock to the sound of "Mama Mama, are you?" will be waking up at the crack of dawn.

NOW, I would not change these wonderful gifts that come with being a mama but it's also nice to come away and spend sometime with your man. =)

These are our dating years......very romantic =)

It's been 6 years filled with joys, heartache, challenges and blessings. We began our journey together with the Lord and not a single idea what would be ahead of us. Therefore I'm thankful the Lord was with us or I'm not quite sure how we would have made it through some of our valleys. Though our valleys have been difficult we have enjoyed some beautiful views, or blessings from the mountain tops and I'm forever thankful I have had Jason holding my hand through it all!

This is my lover, this is my friend. SOS 5:16

Thoughts

Well, I thought I was doing pretty good at keeping up with my blog but today I had 2 friends ask me when I was going to update it about my health and how we are doing. I guess we have had so many other things going on that I have just been blogging about that. It's actually been a nice breath of fresh air to blog about the exciting things we have been doing and just the day to day things of life. As I told Jason pre-transplant, "Once I get my new lungs you won't be able to keep me down!" So far that has been the case, I just want to go and do everything!

However, I did get in "trouble" with my sister in-law, Christie for not keeping her informed about my swallowing problems. =) (We have to keep each other in line sometimes, hehe)
I don't want to sound as if CF patients are the toughest people around (even though they are tough) yet when you live with a disease all your life you just learn to do deal, live with your body not quite functioning the way it is suppose too. Therefore you tend to not mention or say anything about a little issue if you can live with it. It also means that if you mention it there is a pretty good bet that you will be scheduled with another doctor or put on another medicine. This way of thinking might sound crazy to some of you yet I'm just giving you a little glimpse of some of the way CF people think.
I remember writing in my journal when I was very young that I NEVER wanted my CF to keep me from doing anything yet over the years I've come to realize a couple of things.
1) That no matter how hard I tried CF did limit me in some of the things I wanted to do
2) That I didn't want CF to limit me but if I let the Lord work through me then I WAS not limited in what He had planned for my life.
He has blessed me with so many wonderful gifts (my husband, daughter, family & friends, new lungs!) and He has given me opportunities to share what He has done in and through my life.

Sorry I kind of went off the subject but then that's the nice thing about blogging.....you can say whatever you want to share. So, here is my health update.

I did my swallowing procedure last week and it went well. The doctor believes it is just inflamed and should get better over time. I see her next week for a follow up so I might know something new then. We go back to AL the first of March for another bronchoscopy and clinic. I really ask for your prayers as I go in for the bronchoscopy as you might remember the last one was pretty rough. Thanks again for your support and prayers and as always I love hearing from you too!

Got Tagged

Well, I never end up doing the blog tag thing, mainly because I don't have the time but my friend, Micahl tagged me and I thought this one would be fun to do.


So here are the directions:
1) Choose the 4th folder where you store your pictures on your computer.
2) Select the 4th picture in the folder.
3) Explain the picture.
4) Tag 4 people to do the same.~No cheating (cropping, editing, etc.) Have fun!!

I couldn't think of a BETTER picture! This is what Faith looked like as she came out of the play house, LOTS of beads and a "Mask of Zorro" hat!

Tagg~

Christie

Katey

Suzanne

Tiff