5/1/09 - "I'll Praise You In This Storm"

Look at your hands right before you. I am looking at mine. You see hands that are soft, gentle, caring, loving, but powerful hands that you use to hold your child tight while also using those same hands to lift up to our God in prayer. These hands of mine, they hold my family's hands every chance I get. They touch the face of my beautiful wife, right before I kiss her. They cradle my sweet Kayleigh's tiny body, while she sleeps comfortably and peacefully. These hands fit perfectly together when I kneel at my bed, praying the Lord will heal our child and fix her sick body.

As you type or click at your mouse tonight, look at your precious hands. Know that your hands can do so much for others that you love. What are you going to do with your hands tonight? Are you going to walk in to your child's room and brush through their hair, feeling blessed that your child is alive and well? Are you going to sit next to your husband or wife, and hold their hand, comforting them with your love? Are you going to praise God with your hands, asking our Father to forgive you and others for their sins, and lift up someone special to you in prayer?

Tonight, I am going to hold Aimee tight with both of my hands, comforting her poor soul from a tough day of bad news. I am going to have my phone in my hands, praying that it doesn't ring, praying that the doctors don't call me with more news we don't want to hear. I am also going to be praying that our Lord will comfort our sweet precious daughter through these current difficult circumstances. I will also pray with these hands that my heart will stop breaking.

"Lord, with these hands, I'll praise You in this storm"

Kayleigh is not well right now. Her injured brain is swelling and is deteriorating by the hour. The damaged brain according to the scan today, caused by lack of oxygen and/or blood flow, is showing excess edema/swelling and deterioration of the injured section. Praise God that her fontanelle (separation in skull/softspot) separates to relieve the swelling in her brain or unfortunately her spinal cord would be crushed, causing Kayleigh to have a bradycardia (drop in heart rate) that will not be salvageable by a full resuscitation. Depending on direction of swelling, this may still happen at any minute and I am only praising God because this has not happened already.

Our time with Kayleigh may be short, but we are still praying for a miracle. God is amazing and He can do anything at anytime. However, we have also been praying that God gives us a sign to direct us in a path that allows us to understand His plan. It seems that God's plan may be telling us Kayleigh is on her way home to Heaven soon. She is such a precious Angel here on Earth, so I can't imagine how beautiful she will be in the presence of our Lord.

Aimee doesn't usually post much, so when she asked me to post tonight, I would more than thrilled to let her open up to all of you. She is by far the most amazing person and I am so blessed to call her my wife. Please lift her up in prayer and give her words of encouragement as a Mother's love is far beyond the reach of any words well written on a piece of paper.


What does a mother say? I have wanted to write for the blog, for my therapy, & to document my feelings lately but I can never seem to find the right words. Tonight I feel that I must discuss how I am feeling so please bear with me. By the way, it has taken me 29 minutes to come up with this paragraph.

The last few weeks have been the most difficult weeks of my entire life. It is hard to explain the feelings that I have been having. When we first heard the news that Kayleigh was "brain dead" I was in complete shock. I mean, if they would have said that Kayleigh had an episode or 20 other things I could have believed that I think. But, brain dead? Never.

As you know, it has been a very emotional roller coaster filled with doctors giving grim outlooks. Adam & I have always stuck to our guts & we have always been right. So, what did I feel that night? I don't know. If I was forced to pick a word I would say emotionless. I couldn't even find the strength to be sad, mad, confused, etc. I was just stunned, quiet, & emotionless. I think that I cried once that night. There just weren't any tears to let out. I woke up the next day with my usual denial, determination, & strong faith that I used to have after bad news from the doctors while I was still pregnant. I thought this would carry me, but I was wrong.

The first time that we saw Kayleigh with her eyes open after the news was very hard to take. I think this was the worst feeling that I have ever had involving Kayleigh. To look in my little girl's eyes & feel like there was nothing there is heart breaking. She will always be my beautiful princess but you could tell that she was no longer Kayleigh. Her eyes would roll back & lock into position. She just laid there for two hours staring at who knows what. Feeling comforted in my arms or feeling nothing at all. To feel no bond at that moment was ripping me apart. I always try to stay strong around her but it was time to let that go. I just need to hurt & to be sad. All I could think was, "God, please give me Kayleigh back. Please don't take my little girl's mind."

As the days went on Kayleigh's eyes would start to settle & she would appear to be looking straight on. Two days ago I had the most fabulous visit with her. I have tried my very hardest to remain very hopeful. Not naive, just positive. God has worked miracles on my precious baby before & I was not about to give up on the idea that could happen again. Yes, I realize that we have had 3 EEGs & a CT scan saying that there is no hope but my gut said that it wasn't true. Since my gut has always been right I decided to follow it again.

I played with Kayleigh & talked to her the whole time. I felt that there were times when she was really seeing me. Not just looking in my direction. I kissed her over & over & even played with her cheeks trying to get her to laugh. I honestly felt like she wanted to smile. The doctors tell me that she doesn't feel emotion but I felt her emotions in MY heart. I felt like she was comforted & happy. When we put our hands on her head she instantly responds by relaxing & closing her eyes. When I tried to hold her hand she would open her fingers. I don't think I am going crazy yet. I know that this happened. To feel our bond again was unbelievable.

The thoughts of bringing Kayleigh home to spend time with us all as a family is what has kept me going. I love the staff at the hospital & I appreciate everything that they do for us. However, I just want my baby home, in my arms, in her room, undisturbed, taking naps with us, & going for a walk. I want more than 20 minutes of true family time.

I want Brandon & Allyson to know her, to love on her, to see how cute she is in real life & not just in photos. My heart aches thinking about how they must feel. Losing a sister that they really only met a handful of times. They have been cheated out of a huge part of the most amazing person I may ever know. The kids have been so supportive, loving & patient this past year. I owe them so much. I hope that they will be able to see Kayleigh soon. The RSV ban should be lifted on Sunday. It will be a glorious day. I am so looking forward to our 2nd family photo. Oh Lord, how I wish for many more of those to follow.

Tonight we received a phone call that I was not ready for & has devastated me. Kayleigh's brain has started to swell which is not a positive direction for things to go. It sounds more like the beginning of the end. I think they actually used the words brain deterioration & liquefy. If I try to focus on those two words for too long I can actually feel my heart tearing. The doctors don't think that she has very long left. It could really just be days. Here I was living in this little bubble of safety. I thought we would bring our princess home, play with her, have family time, & then God would let us know in this magical moment that it was time to let our baby go to Heaven. I feel like I see the light but it is just a train heading right for me. I feel like time is running out & I don't know what to do.

My husband would describe me as strong & if he were being honest with you all he would through in control freak as well. (This is something that I am working on but that is for another day) What does a control freak do in a situation like this? I feel like my brain is in overload. I am a person who LOVES to sleep. I could stay up until 3am but then I want to sleep until 1pm. I feel like I don't want to sleep at all. My mind is always going & I can't make it stop. Even when I go to bed I feel like I am awake all night. Yet, I wake up rested.

I can't tell you the last time that I yawned. I have started to feel a little light headed the last few days. Adam is worried that I am just going to come crashing down. I am worried that he might be right. By the way, I am not drinking caffeine either. Just water. I want everything to be perfect for Kayleigh & I feel like even though I am not ready to let her go or even the idea of letting her go, I have to make plans.

I am sure that many people could help me with this but I feel like I have to do it. So, what happened tonight? I had a mini freak out in my head because I don't own a black dress! Who needs this? I don't even like to shop much less for this reason. Fortunately for my family who also hates to shop we were right next to a Dress Barn. I went in & found three black dresses that were decent. I tried them on & luckily one fit pretty good. I told Adam that I didn't want to look great & I didn't want to love it. I will never wear it again. I won't want to.

I never thought that I would see the day that my own babies could go home before me. I never visualized buying a dress for my daughter's funeral. I never imagined that I could feel this pain inside of me. This has been the hardest year of my entire life & the hardest moments aren't even here yet. I know that my gorgeous little girl will be safe in Heaven but I just can't imagine not holding her in my arms, feeling her against my skin, making her first sounds, & taking her first steps. I can't imagine her not coming home to see her perfect room. I can't handle the thoughts of what this is doing to my amazing husband. He loves her with everything in him. We are not just dealing with this pain individually. We share in everyone's pain. Our other children, our parents, our siblings, our friends, & all of you. Our hearts break over & over.

What keeps us going? Our faith. I have only been really close to God for a few years & I can't imagine how I would have handled this before then. Knowing that Kayleigh is going to a better place where we will all meet again gives us strength. Knowing that God gave me the most amazing husband in the world to pick me up when I am down, hold me, love me, & wipe away my tears.

Knowing that even though there will be many tough days for us & the kids, they will help us get through it. They actually made us laugh a few times tonight. If it weren't for them being home with us we both would have just closed up & stayed miserable & depressed. They will bring us joy & remind us everyday of the good things in life. Knowing that we have an unbelievable support system is indescribable. Thank you to all of you. Adam & I could NEVER express what you have done for us spiritually, financially, & emotionally. There are many days that we felt like we couldn't have made it without all of you.

I do not know what the next few days or weeks will bring for us. I am afraid. I am nervous every time my phone rings right now. Please continue to pray for us & have your friends & family pray for us. Your prayers have worked miracles in the past & I know they can do it again. We love you all & we feel terrible that you are hurting as well. Please know that we will all take care of each other & we will all get through this together. We may not "know" each other in the normal sense of the word but we will certainly all meet again one day. When you all meet Kayleigh she will look more amazing than she ever has. She won't have any pain, will be whole, & will welcome us all with open arms. How glorious will that be?

With Love,

Aimee

"Kayleigh, we love you with all of our hearts. You are such a blessing to us and we are so grateful to be your parents. Our faith and love is stronger because of time we shared with you.

We know how powerful our Lord is and how He can do anything He wants to do. I feel in my heart that He is deciding to bring you home with Him. Your body will be made new. Your brain, your heart, your lungs, your eyes, and your tummy will be healthier than you ever imagined. You will be so happier in your new home.

As we all prepare for eternity here on Earth, I want you to know that you have touched thousands of lives with your strength and determination. You are the strongest person we have ever known and we are so proud of you for fighting so hard. It is evident that Jesus has laid His hands on you and created a miracle in so many ways. His love is so great! We continue to pray for one more miracle.

We look in to your eyes, Kayleigh, and we cry because if you must go to heaven, we will miss you so much. We just wish you could share your story with millions, personally and help so many others with your own voice. We just wish you could stand with us in front of every single person and pour our hearts out together, holding hands, but we know you will be there looking down on us from heaven. We hope you are proud of us as we did everything we possibly could to save you when no one else believed you could be saved.

We love you so much."

4/30/09 - Daddy's Little Girl

Before I update you on Kayleigh and show you a few new pics, I wanted to let you know about something real quick.

Remember our guest blogger, Brent Riggs? The guy who twisted my arm Monday and put up that wonderful post for us? He’s been working on a book on for over four years, an incredible story he told me about when I went to stay for a week at his home. The book is called “Terrorist to Evangelist: The True Story of Kenneth McClinton”. I was talking to him last night and he mentioned it will finally be available today. Here’s what Brent wrote me about the story:

“Ken was a terrorist. He killed people, bombed things and lived a life of violence and hate. In solitary confinement in prison, all alone with an old Bible, God transformed Ken. It is a modern day “Damascus road” conversion that took a man from being a killer to a believer, from violence to love, from terrorism to evangelist. Ken’s life is a fascinating story and it is nothing short of miraculous that he even lived to see that day of conversion.”

Brent has put up a couple of free chapters on his website for people to preview. We really hope you’ll check it out. You’ll love the book, and you’ll be helping us say a great big “THANK YOU” to Brent for what he has done for us over the months. Check it out here at:
http://www.brentriggs.com/kenny_mcclinton_terrorist_to_evangelist.asp

- - - - - - -

There was not a whole lot of news today with Kayleigh. We met with the Neurologist and he really didn't have anything to offer that anyone else has talked about. No offense to any neurologist reading this post right now, but I have never seen anyone skate through their answers more than this guy today. There was never a yes and no answer and the guy just seem so nervous to talk to us.

According to Dr. Brain, there is no cure or procedure to help with this issue and our odds are (worse than) next to nothing. Not the cooling pads, hyper-barometric chambers, replacing stem cells, or anything else you can possibly think of for many underlying reasons. Because of Kayleigh's bad health in other, such as lungs and heart, the procedures would only be detrimental to her. As you can see, we have NOT given up hope if you can tell by the never-ending questions or research we have been doing lately. We do not want Kayleigh to go, and if there is a chance, there is a will, but unfortunately, we can't find the way. We will continue to pray that God makes this decision for us.

On a brighter note, Kayleigh had a wonderful day today. As I held her peacefully in my arms, she didn't cry or thrust heavy breathes the whole time we were there. She seemed to be content and just plain comfortable. Ya know, whether or not she can understand something that her brain does or does not tell her, move in a direction that is purposeful, act normal as any other child in this world shall act, she is still by far perfect in God's eyes and ours.







Our goal is to bring her home as quickly as the doctors will allow us. Being that she will continue to have nursing care at home, it may take a couple weeks before she reaches the normal max feeds that it will take to make that glorious journey out of the NICU. We are so thankful for everyone who has been there for us through this trying time and we continue to ask for prayers of strength and of course, another miracle.

God Bless,

4/28/09 - Thank You

Twenty-five minutes have gone by on the clock while I sit here and think of the best way to thank you all for your support and I still can't find the right words to say. Not to mention that I am typing with one arm because Brent twisted my other arm right off, begging to write on my blog to reach out to others to help our family. Brent you are a complete blessing and I am thankful I prayed, listened to God, and let you post. Brent, I am thankful God has blessed us with such an incredible friend such as yourself. If you missed Brent's very generous post, read it (HERE).

I really did not want to let him write for us because every single one of you have helped us out so much before. Whether you prayed for us, donated your hard earned money or supported us with your love, we are forever grateful. In just one full day, you all have helped lift such a huge burden off of our backs. Dealing with Kayleigh's situation is one of the hardest thing any parent should have to go through, so thank you to every single one of you for helping take our minds off of our financial stressors so we can focus on Kayleigh who needs all of our positive thoughts. We are SO VERY THANKFUL!!!

Please understand that we would love to share with everyone how much was donated, but several people made a very good point, mentioning an amount can cause possible security issues and we would rather protect our family from any possible criminal activity. Unfortunately, this has already happened in the past. That is also why we are going to post a PO Box soon for those of you who asked for our address. Worrying about shooting an intruder family protection at this time in our lives is something we don't need right now, especially since we will be bringing our sweet Kayleigh home soon. Thank you tons for understanding.

Kayleigh looked so beautiful today, but doesn't she everyday? More of her swelling from the surgery has gone down and she seems to be in a more comfortable state than she has lately. There are very few cries of pain or discomfort and her rapid breathing has ceased for the most part. She was awake today while we held her and even though her eyes are distant, they weren't being pulled in direction that seemed noticeable. She looks straight forward, which made us feel almost as if she was looking at us. To clear some confusion up, she has no cerebral cortex brain functions, but still has brain stem functions. This allows her to breath, heart to beat, to move without purpose, and unfortunately cry/feel pain. She doesn't understand anything, won't learn, talk, comprehend anything she she sees or hears, and will never have purposeful movements.











We were able to speak with the doctors and share our plans with them. We plan to care for Kayleigh in the NICU until she is able to come home, just as if she was normal and had no brain injury. There were questions of whether or not we bring her home with normal nursing care of palliative care. We plan to bring her home on normal nursing care, so we take our time to live as a family before we decide to say good-bye. God is almighty and we will continue to pray He lays His hands on her to create a miracle, so no quick and rash decisions will be made. We will listen to our Lord and decide when that time is right.

So we are happy to continue to share the journey of Kayleigh's triumphant road home like every single one of us planned for so long. Just because Kayleigh's brain is not working the right way, doesn't mean she is not looking down on us with pure joy that we are able to follow through with the plans we always dreamed of. We know she is rejoicing in this moment with us and is happily smiling from a better place. She is our precious daughter, miracle and gift from God, and we will not let anything get in the way of our dreams and wishes.

Thank you all from the bottom of our hearts for the love and support you have given us. Please pray Kayleigh continues to progress with her feedings and everything else, so she can come home sooner than later. That day is still going to be one of the most glorious days of our lives because we still remember everyone telling us she will never make it that far.

We can't wait to hold her here in peace and quiet. We can't wait to see the sunlight dance across her face. We can't wait to see the wind blow in her hair peach fuzz. We can't wait to cuddle up next to her while she naps and we REALLY can't wait until we are all home as a family for as long as we possibly can.

God Bless you all and God Bless our sweet little Kayleigh,

4/27/09 - Guest Blogger - Brent Riggs

Hi friends, this is Brent Riggs, guest blogging for Adam and Aimee today. They didn’t ask me too, I begged them to let me.

First, I know many of you know me and know that Adam and I are good friends, but a lot of you have no clue who I am. Because of what I’m writing today, it is prudent to give you a quick “who is this guy?” My wife and I have a blog at www.riggsfamilyblog.com. We have seven children, three are internationally adopted, two from Guatemala, one from Ethiopia. Our four year old from Guatemala, Abby, has Leukemia, and four times in the past year we spent days at a time unsure if she would survive. So we know a little bit about how Adam and Aimee are feeling, and what they are going through (actually we know a LOT about it).

Adam and I have become good friends over the months. I’ve been honored and blessed to have him stay in our home, and to be able to offer spiritual encouragement and advice. You’ll find my ministry site at http://www.seriousfaith.com/ and my professional site at http://www.brentriggs.com/. We also featured Kayleigh’s story in our magazine called “Serious.Life” in a story called “One Pound Miracle” (http://www.seriouslifemagazine.com/default.asp?issue=9). That issue received over one million page views.

So what? Did I get on Adam’s blog to promote myself. Nope. I just wanted to establish some credibility and background with you before I began to talk about what I really wanted to say today. One last thing, I want to make it abundantly clear that I CALLED the Freeman’s and asked to be able to speak to you on their blog. They were immediately hesitant and it took a couple of conversations for me to convince them. They are already overwhelmed and infinitely grateful for all the help and prayers that you have provided up to this point. The fact remains for them as they wake up each day, they need help, a lot more than they would ever publicly say.

Let’s recap for the newer readers:

You remember that little mortgage crisis last year? It was “in the news” for a while but it continues to devastate the lives of those who were unsuspectingly caught up in the disaster caused by politicians. The Freeman’s had a thriving real estate business, one that was blessing others, providing for family members and helping the community. The real estate crash disintegrated their entire business and income at the same time they began the long journey of relentless medical crisis with Kayleigh who was born three months premature and has been on a life crisis roller coaster from day one.

The bills skyrocketed, the business plummeted. So along with the emotional strain that comes with the daily battle of wondering if your child will be alive tomorrow, they have also endured the stress of mounting bills, threatened foreclosure and repossession, bill collectors, medical expenses, and all the expenses involved in the constant travel and dislocation at the hospital… this type of situation causes all expenses to rise, new expenses to occur. All the while, their income simply disappeared. We aren’t talking years, we are talking about a matter of months. People of lesser character and strength would have succumbed to despair with half this stress. During this time, I’ve watched Adam try to start a new business, work on getting the real estate moving again, and reach out to help others. We aren’t talking about some lazy “victim-minded” people… these are genuinely good, hard working folks who are walking through an EXTRAORDINARY set of trials.

I know that people have already helped the Freeman’s, as have we. In particular, enough money has been given to keep the most critical element in place: insurance for Kayleigh. I know from personal talks with Adam that this money is almost gone too. Adam would barely even consider letting ME write this blog post because they feel you have done so much already (I had to be very persuasive to get them to consider it). This is FAR from over for them. It was not a one time, short term situation. You can’t name a bill or expense they are not so far behind on that “action” is not being pursued. In the meantime, their precious daughter is lying in the hospital with “no hope” according to the doctors.

No hope? For those of us who believe in our Creator, we know that there IS hope. God could miraculously revive Kayleigh. THAT is hope. God could bring Kayleigh into His presence, if He hasn’t already. THAT is hope.

What we have right now is not a loss of hope, but a family enduring both the crushing stress of losing a child, and the debilitating stress of debt piling up exponentially. There is simply no reason for ME, and YOU, and the tens of thousands of other Christians who frequent this blog to not relieve the one part we CAN relieve: financial stress. We live in a land of PLENTY. Yes, times are a little harder right now, but I doubt many people reading this have anything much less than a comfortable life with plenty of material possessions, entertainment and leisure. I’m NOT about guilt trips. I only remind my Christian brethren of this because sometimes we lose sight of how good we really have it. And I ask you to consider how much YOU would hope and pray for help if you were in the same situation.

The Bible teaches us that if we have two coats, why do we let our brother go cold? If we have water, why do we tell them “God be with you” and not give a cup of water? Prayer is critical and required. GIVING puts prayer into action. There is no need for this precious family and their children to have endure ALL of this suffering. Yes, they will endure the sadness of the probable loss of their child. Can’t avoid that, no way out unless God intervenes. But together WE CAN remove the financial stress, the strain of bill collectors and relentless creditors. Sadly, and we hope it won’t be necessary, we need to remove the stress of how they might have to pay for a funeral.

Friends, as a Christian family, we get to love together, rejoice together, cry together and hang tough together. There is simply no need for the Freeman’s to have to endure the paralyzing stress of both critical illness as well as enough financial stress to cripple most people. One or the other is bad enough. Both? May it never be.

I’m not beating around the bush about my request. With the tens of thousands of people who are visiting this blog, we can all click the DONATE button up there on the right side, and we can almost instantly remove the financial stress so this family can spend possibly the last couple of weeks with their daughter without the overwhelming burden of losing everything they own, and the relentless inquiries from bill collectors. It would be hard for one person to give a hundred thousand, but it’s not hard for 50,000 people to give two dollars, or 10,000 people to give $10 or 1000 people to $100.

I’ve got a daughter with Leukemia. I have seven children. When the financial crisis hit in the Fall of last year, my income was cut IN HALF. But I see a family in greater need, and if we can sacrifice, I know you can too. Our family will lead the way by giving $250 first. It’s not much, but if the rest of you join us, it soon will be.

I’m not one for emotional appeals or begging, never have been. However, this is a case of Christians caring for their own. We should not let our fellow Christians suffer under so much without joining them in their trials. We all have hard times. We all experience stress, and perhaps you are feeling the financial crunch today. I understand that. We are too. But the Freemans are enduring EXTRAORDINARY circumstances, and it is simply to God’s glory that we, as a Christian family, pool our resources together and alleviate some of their burden.

Follow me, as I follow Christ…

Brent Riggs
www.seriousfaith.com
www.riggsfamilyblog.com

UPDATE: Based on some valid incoming comments, I want to say that this post was not meant to imply that those who don't share our Christian faith are incapable or unwilling to care and help. Of course they are. We speak in "Christian terms" because our Christianity saturates our life. We know that people who do not hold to Christianity as their faith are just as capable and willing (sometimes more willing much to our shame) to give and help and care as much as those of us who profess Christianity. Again, I write in Christian vocabulary to our Christian family because that is what we base our life on and we can no more exclude it than we can exclude breathing from our life. It is not in any way meant to make others feel excluded or unwelcome to help the Freeman family. Of course not, but evidently that needed to be clarified. ~ Brent

4/26/09 - Too Beautiful for Words

God Bless,

4/25/09 - God's Hand

"I sat and watched as my beautiful wife held Kayleigh in her arms. Through the tears in our eyes, we watched her sleep peacefully on her soft pink boppy pillow. There were no words spoken, but heartbreaking emotions raced through our bodies. Seeing this amazing miracle from God, loved by millions across the world, made us realize how lucky we are to have been blessed with 10 amazing months of love. I laid my head next to hers, smelling her soft fuzzy head, I closed my eyes to pray and fell sound asleep next to her.

For once, I felt as if nothing was wrong and no troubles to stress. We laid comfortably together, enjoying the closeness as a Father and his little girl should feel every single night. I've never gotten the chance to be so close and I may never get that chance again until we meet again in heaven someday. She is my precious sweetheart and it will be so hard to let her go when that day soon comes."

We are not sure if Kayleigh's traumatic and unforeseen circumstance is the cause to her new found issues. She is no longer tense with constricted muscles, but she seems to be breathing heavier and cries out silent cries of agitation. The doctors tell us she feels no pain as this section of the brain controls no emotions, but when she is awake, her uncomfortable condition seems to tell us otherwise. She doesn't hold our fingers anymore and retracts her hands and feet at the slightest touch.

This is so uncomfortable to see and our emotions become at ease when our nurse gives her some sedatives to let her rest. We are all fearful of Kayleigh continuing to act this way as we were told this is how most people with this brain condition will act unless they're asleep. No parent should ever have to see their child like this and I lift my hands in prayer to those who do.

Aimee and I have plans to bring Kayleigh home to her precious room, we so anxiously prepared her for, so she can live out the remainder days of her life. We want Allyson and Brandon to spend some time with their sister, which they were unfortunately not able to do since August of last year due to RSV season at the hospital. We are not sure when that will be due to her lack of feeding abilities, but we only pray the Lord will bless us with our wishes.

Many of you asked if Kayleigh's organs can be donated and this is something we wish we could do, but with the major organs having so many issues, it is not possible. There are options to donate some minor things, but that could only be done before Kayleigh passes and we would rather have her with us at home during her remaining time.

I learned today that God has given us a gift of love and no matter what or when our decisions may be, it will be filled with love. We don't want to regret any decisions we have to make, so we want to be 100% sure we are doing what we feel is right on this inside. No one can tell us what is right or wrong, only God can fill our hearts, making the perfect decision for our daughter when it is purely made out of love. Kayleigh will always be remarkable, whether she is with us here on earth or not. But, we do know that heaven shares no pain and Kayleigh will be made new again.

Someone very special to me told me something today that has touched my heart so deeply that I want to share with all of you. I want you to look closely at the photo above where my hand is holding Kayleigh's. Do you see God's hand holding mine? I do.

I would like to praise God for my parents who walked for us this morning in the March of Dimes walk in Charlotte. We wish we could have been there with you guys, but just know we will walk every year for here on out and for those who can will be more than welcome to join us. Here are some photos of them with Kayleigh the other day and this morning, during their walk in Kayleigh's name. Thank you two and we love you so very much! Also, thanks to all of those out there who also walked in Kayleigh's name. We really appreciate it.







God Bless,

4/25/09 - We Are Lost

First off, I want to apologize for not posting a newer update lately. I am sure you all have been itching for an update and quite honestly, we are having a really tough time right now dealing with this.

Kayleigh had a repeated EEG this morning and the results on her brain waves have not changed. Kayleigh remains in a state of a flat reading and besides being able to breath on her own and maintain a stable position otherwise, she shows no other signs of improvement.

It breaks my heart to say that we have no idea where this recent news will lead us, but the doctors feel with the unchanged brain wave diagnosis, Kayleigh will not recover from this traumatic incident.

The CT-scan showed that the lack of blood/oxygen loss happened within the last 12 days somewhere, so this happened either during or shortly after the surgery. We will continue to see if there are tests to tell us if she had a stroke or something else to give us some kind of answer and understanding.

Aimee and I are in complete shock as we continue to read about others who have come back from a flat reading within a 24 hour period, but no success story goes as far as several days. We know that God can do anything He wants at anytime, but the more time goes by with no improvements, we may feel He has decided this is just the beginning of Kayleigh's triumphant journey to heaven.

As Aimee and I are strong in our faith, there are still questions about our precious little girl's state right now. We question if Kayleigh is in heaven already since her mind is no longer here. Just because she has a beating heart and the ability to breath, with no brain functions, is she already playing with all the other beautiful children in heaven? We don't know and it is a very tough position to be in.

We fear the doctors will soon be asking us the dreaded question to no longer give her the support she needs. We are lost and we need your help, not from an opinion point of view, but of what the Bible teaches us. Over the next week, we are going to be faced with uncertainty, so we beg of all those who are preachers to contact us to pray over us and to help us through this difficult time in helping us come to make a decision that God would want us to make.

We pray that no one should have to go through this in a million years and all we ask if for your prayers of strength. We have cried many tears and are completely lost and need guidance from our Lord. We honestly don't know what our Lord would want us to do here. Our lives are shattered.

All preachers, please email me at Adam@TeamFreemanProperties.com and leave me your contact information so we can call.

All of your prayers have been so amazing and we are so grateful to have everyone supporting us through this unbelievably difficult time.

Thank you so much and God Bless,

4/22/09 - "Our Sweet Little Girl"

After a long and emotional day, we were able to gather some information about Kayleigh's prognosis to pass along to everyone.

A CT-scan was completed this afternoon to determine what may be the cause to Kayleigh's shocking lack of brain functions. It appears there was a lack of blood and/or oxygen supply to the brain during or shortly after her surgery this past week. The other option is that Kayleigh had a pre-existing condition that worsened with the surgery. However, the latter of the two can be cancelled out as there were no obvious issues that can relate to the problems she is having now.

Being that Kayleigh had two blood transfusions this past week and a very low blood pressure number tells me that the problem may be with the lack of oxygen/blood to the brain, but no one is for certain at this time. The doctors still want to see how her body reacts with time, but Aimee and I are pushing for other tests to be done in case there is a reason and it could be something that may be fixed. Time may hurt us if we just sit back and wait to see how Kayleigh reacts. Aimee and I asked for the CT-scan to be done and that is why it was performed today. Even if they may feel nothing can fix the damage that is done, we at least want some answers.

If you look at the bright side of things, Kayleigh is coming down more on her settings. Her oxygen is practically at room temperature, she has been able to get the pain meds out of her system, her blood pressure is normal, and she is not desatting at all. She has woken up and moved around, but the blank stare in her eyes and the repetitive movement in her limbs quickly tells you there is something seriously wrong.

She did react to our voices and seemed to kick her legs a little more, but none of her movements show any kind of purpose. Before, she would reach for her mouth and suck on her fingers, she would grab for her toys, or she would grip your finger when you held her hand. Now, there isn't anymore of that happening and it breaks our heart to see her in this condition.

If time is to determine what is wrong and if things don't progress, we can only hope that Kayleigh's brain will allow her to breath on her own. Starting tonight, the doctors are going to wean her pressure control to see if her body can breath without the help. If she can't breath on her own, then Kayleigh's future prognosis is not going to be good news at all.

It was a blessing for Aimee and I to hold her for several hours and talk to her about many things, such as her big sisters birthday tonight and what bacon tastes like since that helped with her progress in December. We talked about playing at home one day and how fun it will be to have the whole family together. We talked for hours about everything so she could hear our voice and know that no matter what, she will be okay.

We have not lost hope and we trust that God has a huge plan for Kayleigh. He has done many wonderful things with her so far, but we would be sad to see Kayleigh go and not be able to personally share her story for the rest of her life. Although, If God has plans for her in heaven, Aimee and I promise with all that we have, we will continue to share her story to help others through their own journey.

"Kayleigh, you are such a blessing to us and we are forever grateful to have you in our lives. Your Mommy and I could not be more proud of you for the strength and determination you have showed us in the past year. We are all much better people because of you and we love you so very much. May you continue to fight this fight as hard as you can and know that our Lord is holding your hand every step of the way. We are so blessed and honored to call you our sweet little girl."

Thank you all for your overwhelming support through these difficult times. Your words of encouragement have lifted us up throughout the day to stay strong and continue to be there for Kayleigh while she fights for her life.

God Bless,

4/21/09 - Please Lord, Help Us!!!

We are sitting here thinking of the right words to say, but there are never the right words to say when your life has been turned upside down in a blink of an eye.

"I am praying, Lord, that you will speak through me and deliver this message to shine a light on others for them to show you how special Kayleigh is to all of us and how we are not ready to say goodbye."

We need your prayers right now! Something terrible is going on with Kayleigh and no doctor or specialist can lay a finger on what has caused this to happen. Our hearts are breaking right before our eyes and we are in complete shock at the moment. Please help us.

As you all know, post surgery seemed to go as expected. Normally, it gets worse before it gets any better, but Kayleigh was showing great signs of recovery. Although, after a couple days and things progressing normally, sweet Kayleigh is not waking up anymore. She is no longer on the Nitric or any pain medication. She is on very low settings beyond the expected pressure control to help her breath. Her sats are great and her heart rate/blood pressure is right where it should be. However, she is still not waking up like she should be at this point.

Her sweet tiny body lays still, with very slight (unexplainable) movements at times, while her muscles are contracted beyond any measurable understanding. The thought of some kind of neurological problem quickly raised a red flag and an EEG test was conducted only to show that a big section of Kayleigh's brain (cerebral cortex) is not working at all and may never work again. In other words, the doctors stated she has a flat reading, which is another term for being brain dead.

This is so hard to write and so hard to take in right now. The doctors plan to do more testing to see what could have caused this to happen and why she still makes unexplained movements. Was it the excess pain medication they gave her to calm her down? Was it a stroke that she encountered while fighting off the pain the other night? Was there not enough oxygen or blood flow to the brain? Did the Nitric cause this? Barbiturate poisoning can cause flat readings at time, so could that be the case? (She had some phenobarbital this morning) With all these questions running through our heads, we have no idea, but we pray we will get the answers as quick as possible.

This has all happened so sudden and we don't know what is going to happen from here or what to even do. All we can do is pray there was some error, some mistake, something was overlooked or by God's grace, her brain will miraculously start working again. We have all seen miracles happen with Kayleigh many times before and I have learned my lesson by giving up hope and not trusting that the Lord has the final decision. That is not even a question in my mind anymore.

Unfortunately and sadly, no one else is optimistic when it comes to Kayleigh's recovery from this and when the doctors comforting love turns in to the "matter of fact" attitude, we know they have once again lost hope. The doctors have been amazing through this journey and we know they will do everything in their power to help Kayleigh through this. There is no one else in this world we would trust other than them, but it just hurts sometimes to compare Kayleigh to other situations when Kayleigh has created her own case study of uniqueness.

With all the faith in the world, it still hurts to think that this journey may end so drastically and beyond understanding. Kayleigh is our precious gift from God and He has given us this sweet miracle for a reason. Whether she touches someones life to bring them closer to God or closer to their family, we may never know the true reason until we meet our creator face to face. We have to trust God for the things He does, but staying strong and patient for those answers are practically unbearable at times.

We know the doctors are not as optimistic and statistics prove that Kayleigh's chances are very slim right now, but we all know our Lord all too well and His way will be the right way. We don't know what is going to happen in the next day, week or month, but if we could ask for anything from you all, please pray your hearts out and please keep us strong with your support through these difficult times. Please pray that the Lord will fix Kayleigh's brain waves so she can continue to bless all of us with her amazing strength, love and that adorable little smile. Thank you.


"Lord Almighty, You are so amazing and your love is beyond greater than any words we could ever imagine. We are not blaming you one bit or nor are we angry at you for what is going on here because we trust in you and we love you with all of our hearts.

We beg of you not to take our little girl from us. Heal her troubled body and give her the strength to make it through this devastating circumstance so she can come home to our family who anxiously awaits with open arms.

Our faith is so strong and we know you are so powerful to do anything your will desires. If Kayleigh is ready to go to heaven to be with you, we completely understand, but then please give us the strength to live our lives without seeing her precious smile and filling our hearts with happiness every single day. Give us direction to continue to share her precious story to help so many others come to know you Lord, love each other and find hope in their own journeys. We know that we are here to prepare our lives for eternity with you, so we trust that your decision is the right decision.

We are just not ready to say "Goodbye, for now."

Please Lord, Help us!!!

4/21- Please pray for Stellan who went into surgery this morning. Http://www.MycharmingKids.net

4/20/09 - Where Are You Praying From???

Ya know, I was sitting here thinking and I thought of a great little project that I would love to put together for Kayleigh and beyond that, it would be awesome to just see a video of all the photos.

I have seen comments come through from all over the world and I have looked at Kayleigh's World Map to see where everyone is located. We recognize names, but we don't have faces to go with many of those names. It would be a great opportunity for us to see who you are and where you are from.

Here is how it works. Take a photo of you, your family, your child, a landmark or whatever while holding a sign that says: Praying for Kayleigh in... (and of course put your city/state or country)

If you haven't seen my good friend, Jennifer's (McKmama) blog, and how she does it for sweet Stellan, it is similar except that we just want photos of you with your sign reading: "Praying for Kayleigh in...."

Once I gather all the photos/location signs, I would like to put together a video of everyone who is praying for Kayleigh so we can all see where everyone is from.

Please send your photos ASAP to: Adam@TeamFreemanProperties.com

4/20 - Kayleigh is still making slow, but good progress. She is starting to wake up a little and open her eyes every now and then.

4/19 - Kayleigh's making great progress. They started to wean her off the Nitric. Her swelling is way down & her blood pressure is great. We are so excited!!!

4/18/09 - Post-Operation Update

Just wanted to thank you all for the great comments on the videos. It was a blessing to bring you all in a little closer to our family. If you missed the videos, check out the last post and watch how our day (yesterday) went down.

Kayleigh-bug, little munchkin, petunia, little miss thang, heart attack giver is doing better and better as the hours go by. I didn't want to alarm anyone, but last night was scary as all get out. Just after I posted the "first/failed attempted" videos, we got a call from one of the nurse practitioners telling us Kayleigh's body was not accepting the crazy amount of pain medication they were pumping her with and she had a pulmonary hypertensive episode to where they could not get her sats back up without putting her on the Nitric Oxide. If you all remember how "December" went down, you will remember NO2 all too well. Basically, NO2 was a life saver.

Needless to say, with her oxygen and vent settings up as high as possible, enough pain meds for 3 grown adults and the Nitric Oxide flowing through her body, Kayleigh was saved from disaster. Besides having to get two blood transfusions already, and several doses of Lasix to remove excess fluid off her body, she's recovering slowly but surely.

The biggest scare was her blood pressure though. The median number was creeping in to the 30's and that is not a good sign, especially when she has pulmonary hypertension. The normal median number for her should be in the 60's, so half of that spells bad news. On the other hand, the swelling in her abdomen is the cause for this by putting pressure on her lungs and heart. With the Lasix pulling fluid off, she has been peeing quite a bit and is probably half the size she was yesterday. Aimee and I were beyond shocked to see how blown up she was from the surgery. Kayleigh's belly can get big sometimes, but damn WOW it's HUUUGE!!!

So right now, Kayleigh is not being bothered by anyone so she can rest and get herself recovered fully before another attack hits. The more she is calm and the more the swelling goes down, the better she will get. Please pray that happens quickly.

Sorry, I have to interrupt to tell you something funny. The doctor just called and of course every time you see the hospital number come up, your heart drops. Anyhow, we joked about this today with her at the hospital, but she normally is the same doctor who can't catch a break and calls us every time there is bad news. Well, she just called to prove a point that she doesn't always call when it is bad news and told us that she is looking at Kayleigh right now, satting at a 100% while sleeping peacefully with a much better blood pressure number. We laughed pretty hard and it felt good to laugh.

Okay, so please pray for Kayleigh to pull through this as she seems to slowly be doing. We have made it too far for something like this to get in the way and bring her down. She is a true fighter and has shown us that so many times. Can you imagine, she has been through so much more than 98% of all humans, in less than 10 months. Goodness gracious.

Praise God for His amazing gifts. We are so blessed to have Kayleigh show us how precious life is and how awesome your love is. Thank you Lord!

I didn't get to show this other day when I wanted to, but this was the first newborn outfit Aimee and I bought when we found out we were having a girl :) I am so proud and emotionally touched that I finally get to see my sweet little girl wearing it.



God Bless,

4/17/09 - Let's Try this Again

Let's try this again. Now I have got the videos working and we are ready to go...

Yesterday was one of the longest days of our lives and I still have to somehow capture it all again just perfect for you in this post. Well, maybe not...

Aimee and I decided to create a VLOG (Video blog), starting Wednesday night and all the way through the day yesterday (Thursday) to share with everyone a day in the Freeman family shoes. It is not top notch quality but hey...it works. We need to learn more about editing, but that will come with time. I hope you will enjoy getting to see some behind the scenes with our family.

Also, we would like to warn everyone that Kayleigh's after surgery is not intended to show Kayleigh at such a vulnerable state, but to let you realize how serious and intense this journey has been. It is to open people's eyes who need to feel the impact of such a world many of us come to unfortunately know so well. After all, our whole goal is to help make a difference in someone's life by sharing the truth of how amazing our Lord can be through His blessings.

We hope you all enjoy it and please say a prayer for Kayleigh. She is still struggling to get under control with her tolerance to the pain/sedation medication. She is such a bull, that it is taking her "A LOT" of medication to control her. Pray that this will subside and she will recover quickly and feel no more discomfort. Kayleigh has had her fair share of troubles, so it is time for her to live happy and healthy.

All of your thoughts and prayers were amazing today and we couldn't thank you all enough for the support. I wish there was a way we could give back to every single one of you. Thank you all from the bottom of our hearts.

Enjoy the show and God Bless!!!

Kayleigh Day (Video 1)
Kayleigh Day (Video 2)
Kayleigh Day (Video 3)
Kayleigh Day (Video 4)
Kayleigh Day (Video 5)

5:22 - Aimee, the kids and I are on our way to speak at a March of Dimes event and help raise awareness for these little miracles.

3:26pm - Picking the kids up from school. Ready to play with them, so we can laugh & relieve some stress. Kayleigh is somewhat stable still.

2:03pm - Please pray this recovery is quick so she can get back to normal. It's hard to see her like this. She has 6 more scars to tell her story.

2:00pm - Poor Kayleigh. She's not feeling too good. Her whole body has swelled up pretty bad, and her sats are struggling to stay up.

1:41 - Just got the call. On our way up to see Kayleigh back at her bedside.. Woo Hoo!

1:30pm - We should be getting a call any minute to go up to see Kayleigh. We are so anxious to see her and give her some smootches.

12:30pm - Surgery is over and was a success! Recovery will be tough on her, but dr felt the procedure went better than expected. Whew!!!

11:00am - Drs are finished with the G-tube, Nissen & biopsy. They're finishing the hernias & all they will have left is the central line.

10:37am - So far so good. Moving right along. Kayleigh is doing great, but her parents are a nervous wreck :)

9:55 - They have taken Kayleigh into to surgery and will begin shortly. Updates to come as we receive them. Please pray things go smooth.

8:05 - They are running behind and have not taken Kayleigh down to surgery yet. She is smiling more than ever and looks just precious.

7:15am - Good morning. We are on our way to the hospital to see Kayleigh off to surgery. Thank you for all of your prayers.

4/16/09 - "Thankful Thursday"

Before I kick of this weeks Thoughtful Thankful Thursday, I wanted to thank you all for your prayers and please continue to pray as the surgeries will begin at Thursday, 8:00am (EST). I will be updating through Blogger/Twitter/Facebook all morning to keep everyone posted. Please say a prayer, not only for Kayleigh, but for all the doctors and staff who are involved with the procedures. Thank you so much!

This week is going to be different and I would like to see if by doing things this way, we will get a lot more people involved to share their stories. .

Okay, here is how our "Thoughtful Thankful Thursday" works.
This week, I would love to hear about someone special in your life who you are thankful for and why. This will be a great way to let everyone know how awesome that person is in your life and I am sure it will make them feel all warm and fuzzy too. Whatever you are thankful for, I want you to spill your hearts out like never before.

God has blessed us with so many people in our lives and I feel that I could never thank those people enough. So I am going to shout it from the roof top so everyone knows who has found a place in my heart for a special reason and who has molded me in to the man I am today.

This week, I am going to kick it off with none other than my beautiful wife, Aimee.







Wow, just look at those pictures (the last is my all time favorite) Yowzers! Is she not beautiful or what??? I am glad that 95% of Kayleigh's followers are female and the 5% that are male are married, because I would have to beat them off with a stick if I wasn't careful (lol).

Seriously, beyond the amazingly beautiful looks, this is the strongest person I have ever met. If you want to know where Kayleigh gets her strength from, then here she is. Aimee is such an intelligent and strong willed woman that she has left an imprint on my heart that makes me realize how lucky I am to have landed such a keeper.

Aimee and I have "that kind" of relationship. We are "those" people that you see, who are head over heals 24/7 and practically do almost everything together. We are continuously showing each other affection and we just can't seem to get enough of each other. I am so glad that I have a woman in my life who shows me on a daily basis how much she loves me and makes me feel so special.

Don't get me wrong, there are days full of stress that lead to arguments, but our communication allows us to work through our problems and make the changes we need to keep each other happy. Because of that, I am so proud to have my best friend as my wife. I have learned so much from Aimee over the years and she has given me the drive to be the best at anything I put my mind to.

She is my rock and my shoulder to cry on. I am so blessed that God has given me Aimee to be by my side through this journey with Kayleigh. She is an awesome Mom and I am so lucky to be the man in her eyes.

Thank you so much Aimee for putting up with me through thick and thin. I want you to know that I love you more than anything in this world and I am so thankful God has blessed me with you. I can't say enough wonderful things about you and I hope continue to see how much I love you even when times may be tough. You are my everything and you always will be. I love you! <3

Okay...Here's how you get your link on our blog for "Thoughtful Thursdays"

Go to YOUR blog, create a new post for "Thoughtful Thursdays". Start by copying and pasting all the following HTML code at the beginning your post.(NOTE: Make sure you are in HTML mode or view when you paste in HTML code!):

<a href="http://www.kayleighannefreeman.blogspot.com" target="_blank"> <img border="0px" src="http://www.brentriggs.com/thoughtfulthursdaybadge.jpg" /> </a>

Then, click the Mister Linky's Link DOWN BELOW for the form to enter the title of your BLOG (not your post, your blog), and the link to your blog, or the blog post, either one. (if you don't have a blog, feel free to leave a comment, but we would prefer you put up a post if you have a blog.)

That's it! You'll be linked in today's entry.

Can't wait to read your blog posts for "Thoughtful Thursdays"

Surgery @ 8:00am (EST) - Procedure consists of G-Tube, Nissen, Bilateral Hernia Repair & a new Central Line Placement. Please pray for Kayleigh and the doctors.

Great News!!! Blogger just updated to where I can update the blog by phone instead of just being able to do Twitter and Facebook. Sweeeeet!

4/14/09 - Back on Track

As of right now, surgery is scheduled for Thursday morning. They wanted to do the procedures at 8:00am, but we are checking to see if a later time that morning is possible because the kids have to be taken to school. If it changes, I will let you know so everyone can be praying.

Kayleigh is doing really well and she is tolerating her feeds. Her belly has blown up a little, but nothing more than her norm. It is nothing to be concerned about because she is still having stools and her bowel sounds are good.

This weeks "Thoughtful Thursday" is going to be a little different than others. I am going to do a "Thankful Thursday" instead and thank someone who has impacted my life so much. If you are interested in joining in, just write a post and link it to our blog so others can see who you are thanking and why. This will allow those who are being thanked to feel blessed your life was impacted by theirs for the kindness or leadership they have given you.

I am looking forward to writing my post and I can't wait for that person to read what I wrote because I don't feel like I have said thank you enough. I want the world to know how awesome this person is to me.

I wish you all a wonderful Tuesday and I will give you more updates with hopefully some new cute photos of Kayleigh soon.

God Bless,

4/12/09 - HAPPY EASTER!!!

I am in heaven after spending some quality time with Kayleigh tonight by myself. Don't get me wrong, I love having Aimee with me when we go to the hospital, but there are those rare times where I get to spend one on one time with my sweet daughter and tonight was one of those times.

Kayleigh is doing much much better and I am pleased to say that "hopefully" she just had a cold that caused her to act up this past week. Whoever has been following Kayleigh from the beginning will know that she can handle the tough times like a champ, but when it comes to something small, she hits rock bottom.

Kayleigh is on her way back to full feeds. They started her the other day and are moving up quickly. Her belly is handling it quite well. It has enlarged a little, but it is soft feeling which is normal for her. She is no longer on any antibiotics and is not producing any yellow/green mucous out of her nose/trach. The great news is Kayleigh's recent Echocardiogram has showed that Kayleigh's pulmonary pressures have returned to her normal baseline. Her baseline is still on the elevated side, but much better than where they measured out to be the other day. Also, her heart's right side functions have return back to normal as well. Praise the Lord!

The cardiologists met on Thursday for their weekly meeting of the minds and are possibly deciding to transfer Kayleigh's hypertension medication (Flolan) to Trachlear, which is a medication most pulmonary hypertensive patients go on, but we didn't think it would be this early in the game. Trachlear is sort of a liquid form of the Nitric she was on before and will do the same job as the Flolan is doing now. Once they get her on the Trachlear, they will start to wean her off of the Flolan and remove the central lines that are placed in Kayleigh's chest. The good news about Trachlear, is it will be administered through her "future" G-tube and orally when she starts to take a bottle later down the road. The bad news of this drug is that it has potential to disrupt or even harm her liver functions. I think the older she gets, the less of a chance that will happen. I am guessing that now she is bigger, she has a better chance of it now harming her. We at least hope so or that could be another problem we don't want.

Speaking of Kayleigh's weight, she is over 9 pounds now. What a chunky monkey! You can tell by one of those photos, she is putting on the pounds. It is hard to believe she is nine times her birth weight. Yowzers! She hit the 9 pound mark last week, but quickly fell below once they gave her some Lasix to remove some of the excess water retention she was holding on to while she was ill.

Last but not least, Monday we will be scheduling Kayleigh's upcoming surgery for the g-tube, nissen and bilateral hernia repair. We are beyond excited to hear we are getting close once again to proceed with the surgery plans because the quicker we can do this, the quicker she can come home.

It is tough to write about some fun thing when Kayleigh isn't doing well, so I am going to rehash our events when we went to Joyce and Terry's house (Aimee's Mom and Step Dad) last weekend. We all went for a hike on their nature trail down to a lake that is near their home. Besides sneezing and blowing my nose a million times due to the nasty pollen issues we are having here in Charlotte, it was a great escape from the real world. It felt awesome to finally get out of the house/work/hospital to have some wonderful family quality time. Here are some of the photos that we took from that day.








Everyone loves licking the brownie bowl! "Sorry Ally" :)


I can't say enough how much I appreciate everyone's thoughts and prayers through this journey. It is a blessing to receive so many thoughtful comments on here and on Facebook. I am trying to answer more of your questions, so please let me know if you have any and even though we are so very busy, I promise to do my best to get back to you in this lifetime a timely fashion.

Happy Easter Everyone!!!

God Bless,

4/9/09 - "Thoughtful Thursday"

Before I kick of this weeks Thoughtful Thursday, I wanted to give you an update on sweet Kayleigh.

Our visit today was extra special and Kayleigh seemed to be in high spirits. After watching her sleep the whole visit yesterday, it was great to see her awake and batting at her play toys. Yes! She was grabbing at the toys hanging from her "clothes line" that streams across her bed. She has a rattle she especially loves where she will swipe at it or grab and try to shove in her mouth. It was beyond cute to watch her interact with it and such a blessing to prove even a bigger point that she sees her toys clear enough to locate with her hands.

Some of the other tests have come back and it seems they want to chalk all this drama up to be a cold that she came down with. Honestly, with all the pollen going around and Charlotte, NC being a hotbed for dust and allergens, I wouldn't doubt it if the issues were caused by a several allergy attack. It seems that several nurses, family members and even myself had intense diarrhea of the nose sneeze fests this past weekend. I can only pray that is what threw Kayleigh in to a tiffy.

Good news is the doctors felt Kayleigh was in a better position to start her feeds up, but they will be starting slow and build up from there. The news is, we will be waiting until next week to do any type of surgeries in case this cold/allergy issue surfaces again.

The great news is she is showing quick signs of improvement and not heading in a wrong direction anymore. I am not going to jinx it anymore because it has not been working for me, so I am going to just say it this way; If Kayleigh has surgery sometime this year and can come home before I wind up where she is of old age, I will be more excited than a child on Christmas morning.

Thank you all for the prayers and let's keep them flowing stronger than ever.

This has been on very crazy week for the Freeman family and we are happy to share our sixth "Thoughtful Thursday" event with you. We will be doing this every week and we would love for everyone to join in and do something nice for someone out there.

Okay, here is how our "Thoughtful Thursday" works.

You all are going to go out in to this crazy world and do something EXTRA nice for someone else. You can do something nice for someone you love, someone you don't love, or someone you you have never had the chance to love and come back here to share about it each and every Thursday.

God has shown Himself through Kayleigh and we need to glorify Him in all that we do. We need to touch other people with our kindness and spread the love of God with Kayleigh's story to everyone we possibly can. When you deliver your good deed to someone, let them know that they were touched by Kayleigh and share her website with them, so they too can join in on Kayleigh's journey and our "Thoughtful Thursdays" to glorify God.

This week, I want to spotlight Kerren all the way from South Africa. Her Rambling of My Life blog is great and she is doing a special Thoughtful Thursday for Brandon and Allyson. Since South Africa is such a distant location from where we are, Kerren is putting together a care-package full of artifacts about her country and city for Brandon and Allyson to learn/educate them more about where some of Kayleigh's blog followers come from. I thought it was a very sweet idea and such a kind gesture that will share just how special Brandon and Allyson are to so many too. Click Here to see her blog and read her post.

NOW...You you have got to think outside the box and come back and share it with us and the world. Be creative and make your stories stand out. You never know, your story may be in the spotlight for ALL to see.

Here's how you get your link on our blog for "Thoughtful Thursdays"

Go to YOUR blog, create a new post for "Thoughtful Thursdays". Start by copying and pasting all the following HTML code at the beginning your post.(NOTE: Make sure you are in HTML mode or view when you paste in HTML code!):

<a href="http://www.kayleighannefreeman.blogspot.com" target="_blank"> <img border="0px" src="http://www.brentriggs.com/thoughtfulthursdaybadge.jpg" /> </a>

Then, click the Mister Linky's Link DOWN BELOW for the form to enter the title of your BLOG (not your post, your blog), and the link to your blog, or the blog post, either one. (if you don't have a blog, feel free to leave a comment, but we would prefer you put up a post if you have a blog.)

That's it! You'll be linked in today's entry.

Can't wait to read your blog posts for "Thoughtful Thursdays"

God Bless,

4/8/09 - Quick update

Kayleigh is feeling better today, but not all the tests results have come back. She is acting more like herself and is not having as many secretions. Her sats are staying where they are supposed to for the most part and she isn't showing signs of discomfort. The cardiologist meeting is on Thursday, so we will know a little more about what they plan to do.

I will be sure to update more as I get more information. Sorry this isn't much, but we haven't really gotten a whole lot of news either :)

Thank you for your prayers and please keep them coming.

God Bless,

4/6/09 - POSTPONED

After we got all that great news yesterday, the NICU roller coaster is at it again. We have not gotten official results back from all different tests, but Kayleigh started to go downhill yesterday and quick! They have not idea why this happened and they are taking all measures to figure it out.

The only test that has come back yet is he RSV and that is negative. The ECHO showed Kayleigh's pulmonay pressures were elevated and her heart's right side was not functioning as strong as it normally is. The cardiologists are getting together for their weekly meeting on Thursday to determine whether or not to do another heart cath procedure to determine what is going on with her heart. Their fears are the heart may be causing this vicious cycle.

To explain what happened, yesterday Kayleigh was doing great and then all of the sudden, she was coughing, spitting up and having mucousy drainage out of her nose and trach. Her sats dropped quickly and they had to increase her oxygen and pulmonary pressures to get her sats in the right position. After a few hours of controlling her stability, she started to struggle again with the same problems.

The Gastroenterologist came in and felt like Kayleigh's liver and spline were enlarged, so they will be doing an ultrasound on those to determine what may be causing that. With problems rising and multiple tests being performed, hopefully the doctors find something soon.

Please stay close for updates and pray that whatever is causing this issue will be discovered and taken care of quickly. Please pray it has nothing to do with her heart and we can move on from the nightmares we had with her pulmonary pressures being high. Unfortunately, with all this going on, it does postpone the upcoming surgeries for this week.

Please pray for our sweet Kayleigh and I will update as soon as I hear something.

God Bless,

4/5/09 - "NEGATIVE"

For those who did not see my Tweet on Twitter or Facebook yesterday, Kayleigh's biopsy came back NEGATIVE for Hirschsprung's Disease. WOO HOO! We will still have to keep our eyes out and figure out what is going on with her belly, but this is a step in the right direction. Many of you posted comments on other possibilities, so we will be bringing those up to the doctors on Monday. Thank you so much!!!

On another great note, one of our primary nurses (possibly two now) will be part of the staff that will take care of Kayleigh when she comes home. We are so pumped and excited to hear that. It will make this transition that much easier and exciting. We love our nurses so much that we were afraid of having to get to know and love someone new, so it is a blessing that we will have couple that already know Kayleigh really well and can be a strong advocate for her.

Many of you know that having a new nurse or a nurse that doesn't know your child can be the most stressful part of the NICU, especially when you have been there for quite some time. So this is by far some of most exciting news we have gotten in a while. It feels like so much weight has been lifted off our shoulders.

On the other hand, many of you asked about our home and how that situation is going. We met with United Family Services and they were able to help us extend our foreclosure from March 29th to April 27th. The bank has agreed to look at our information to offer up a possible solution, but Aimee and I feel they won't make much of a change for us. But, at least we were able to stick it out for another month. The donation money was not able to help us catch back up what the bank needs, so we felt our best option was to make sure our family's insurance will not lapse and our on;y vehicle can get us around for work. If the bank doesn't come up with a good option for us, we may have family who will allow us to pack in their home, but I will let you know that later when the details are more concrete.

Please pray that things go well this week. The surgeries are going to be Tuesday or Wednesday, but I will let you all know the second I find out. Keep up with Twitter and Facebook because sometimes I will update there first. Thank you all for your resent prayers because God was certaily listening :)

I hope everyone is having a blessed weekend.

4/3/09 - Biopsy Completed

This is a quick post to let everyone know that Kayleigh had her biospy procedure this morning and we are waiting for the results. Please pray those results are negative for Hirschsprung's disease.

We should get the results back within 24 hours, so hopefully tomorrow we will be able to post the news.

Kayleigh is having another great day today and she handled the procedure like a champ.

Thank you all for everything and God Bless,

4/2/09 - NEW PLAN - PLEASE PRAY

Okay, today was a busy day and my head is spinning in a million different directions. Aimee and I have been faced with a tough decision, but we feel God is leading us in the right direction.

We sat down with one of our neonatologists, our cardiologist NP, our primary nurse and a couple other NP's and discussed a new medication that will take place of Kayleigh's Flolan, which treats her Pulmonary Hypertension. The name of the medication is called Remodulin. Unlike the Flolan's three to five minute window in case something goes wrong with the central line, the Remodulin has a four hour window to fix the line. This will help us stay a little more calm when she comes home and we can get to the hospital in time if there is an emergency.

Now here is where we need your prayers. Beyond the new medication CHOP (Children's Hospital of Philadelphia) mentioned, the main doctor there said they complete the Nissen procedure on all of their pulmonary hypertension neonates. We mentioned before that if Kayleigh does not have reflux or and aspiration problems, then we don't need to do it. But, no one mentioned that if Kayleigh develops reflux down the road that the aspirations can tear down her lung tissue, that may cause Kayleigh to need a lung transplant.

We thought about these last couple weeks and how everywhere we turned, someone was talking about Kayleigh needing the Nissen procedure. Now when her belly blew up to cancel the procedure the other day and now a hypertension specialist mentions the Nissen procedure, we feel that God is telling us something. So, we feel it is in Kayleigh's best interest to go through with the Nissen procedure, risking the negative issues of the procedure that will occur upfront, just to prevent a bigger issue (lung deterioration/lung transplant) down the road. We completely trust that God is leading us in the right direction.

Since Kayleigh is going to have the Nissen procedure done, she will get the g-tube placement instead of the PEG. The reason for this is because Kayleigh will have to have a three inch incision for the Nissen and they will just do the more invasive g-tube procedure at that point since she will be already open. It doesn't make sense to do the PEG microscopically when they will have her already opened up.

Tomorrow morning, they are going to complete the biopsy to either determine or rule out Hirschsprung's disease. If we get the results back the same day, the doctors will complete the procedure on Monday. If they don't get the results back, they will be doing the procedure on Tuesday. Here is where we need your prayers the most. If Kayleigh's biopsy comes back positive for Hirschsprungs, they plan to complete a colostomy surgery and they will do this next week when they do the Nissen and G-tube procedure, pushing the bilateral hernia repair to a future time. That may mean we will have to stay in longer to recover and to wait for a future surgery to repair the hernia's.

AHHHHH! This is enough to drive someone insane, but we are being strong and praying that everything is working the way it is supposed to. Poor Kayleigh has been through so much and just when you think she is getting close, more things seem to pop up in the way. We just need your prayers that these procedures are the last of it. I really feel we are close to getting her home and we need to all pull together and pray our hearts out.

Thank you all for being there for us through thick and thin, but we need you all now more than ever before. Please pray that Kayleigh does not have Hirschsprungs or anything major that may cause her to have another procedure. Pray we can tackle the Nissen, G-tube and Hernia procedures and get her out of there. She was so precious smiling and playing with her rattle today. I am so tired of seeing her sick and recovering from yet another procedure. It is time to bring her home, so please pray hard with me this is the end of the NICU journey and our new life can begin at home.

We love you all!

God Bless,

4/2/09 - A Chance to Help/Thoughtful Thursday

Tomorrow morning at 11:00am, I am posting an introductory post about Kayleigh on the 5 Minutes for Special Needs blog. It is a blog that consists of multiple families who act as a support system for others who have or are expecting a child with special needs. This is another chance for Aimee and I to reach out and help others through their own journey. Lord knows we have had our share of expertise with Kayleigh and all that she has been through. We look forward to being a part of a special blog and helping anyway we can.

This has been on very exciting week for the Freeman family and we are happy to share our fifth "Thoughtful Thursday" event with you. We will be doing this every week and we would love for everyone to join in and do something nice for someone out there.

Okay, here is how our "Thoughtful Thursday" works.

You all are going to go out in to this crazy world and do something EXTRA nice for someone else. You can do something nice for someone you love, someone you don't love, or someone you you have never had the chance to love and come back here to share about it each and every Thursday.

God has shown Himself through Kayleigh and we need to glorify Him in all that we do. We need to touch other people with our kindness and spread the love of God with Kayleigh's story to everyone we possibly can. When you deliver your good deed to someone, let them know that they were touched by Kayleigh and share her website with them, so they too can join in on Kayleigh's journey and our "Thoughtful Thursdays" to glorify God.

This week, I want to spotlight Jenney from TheDraysToday blog. The thoughtful gesture was not actually done by Jenney, but her sister Melissa, who really stepped up and helped her loving sister. Click Here to read the story.

NOW...You you have got to think outside the box and come back and share it with us and the world. Be creative and make your stories stand out. You never know, your story may be in the spolight for ALL to see.

Here's how you get your link on our blog for "Thoughtful Thursdays"

Go to YOUR blog, create a new post for "Thoughtful Thursdays". Start by copying and pasting all the following HTML code at the beginning your post.(NOTE: Make sure you are in HTML mode or view when you paste in HTML code!):

<a href="http://www.kayleighannefreeman.blogspot.com" target="_blank"> <img border="0px" src="http://www.brentriggs.com/thoughtfulthursdaybadge.jpg" /> </a>

Then, click the Mister Linky's Link DOWN BELOW for the form to enter the title of your BLOG (not your post, your blog), and the link to your blog, or the blog post, either one. (if you don't have a blog, feel free to leave a comment, but we would prefer you put up a post if you have a blog.)

That's it! You'll be linked in today's entry.

Can't wait to read your blog posts for "Thoughtful Thursdays"

God Bless,

You gotta see this...

Go check out Brents April Fools Joke! www.riggsfamilyblog.com

I think some people are taking it seriously, but stay on to see the joke. It is so funny and a very good April Fools prank indeed.

I laughed myself out of my chair this morning when I saw it, and I am still laughing.

God Bless,