I just wanted to do a very quick update since I am so far behind on updating.  We have had a very busy summer and I haven't had much time to really post.  We are about to be keeping Madison in for the winter so I will have a lot of time to post about our summer and share some great stories, videos and pictures.

In May we submitted all the forms for the Madison's Make A Wish trip.  We are leaving this coming up week going to Disney.  I think Shane and I are more excited than Madison.  The entire family is going to get to go!  Amy, Paul, Aubrey, Grandma Jackie and mom!  All eight of us are staying in a two bedroom suite!  YIKES!  It's a good thing we all get along. 

I promise that as soon as we get back from our trip, I will do lots of blog posting.  Please be patient with me.  I am sorry that I haven't posted like I used to but I am so very thankful for being so busy.  That just means that Madison is happy and HEALTHY and able to be on the go. 

Thank you all for loving our precious Madison and taking this journey along with us. 

Day 3 Birmingham

We had our last appointment this afternoon. It was with pulmonary and was not until 12:45. We took advantage of the late appointment and slept in until 9:00 this morning. We all slept 12 hours last night and it felt wonderful!

The pulmonary doctor went over the sleep study and just did a check up. He was pleased with how well she did with the sleep study and the results were good too. Normally, Madison sleeps with 1 liter of oxygen. During the sleep study they turned her oxygen off completely just to see how she would tolerate. When Madison's oxygen levels dropped below 88, they turned her to 1/4 of a liter. She did not drop any on that amount however she never got in to a deep sleep. The doctor agreed that we should keep her on one liter so she will rest better. 

Madison has also started a wheeze but there is no consistency to it at all. One day she will wheeze while in her walker, the next it will be in her car seat. It is never always in the same thing and it is not everyday. He wants us to do breathing treatments for a month twice a day and if we see a difference then that will become permanent. Overall, it was a good appointment. 

It is 6:50 and all three of us are already in bed. Mom and I are both on our iPads and Madison is out. We will be getting up early in the morning to go and get the newest member of the family: Madison's new puppy which is a teacup poodle.

We are ready to get home. We have missed Shane like crazy. I hate that he can't come on these long trips with us, but I love that I have a Mama that can come with us and we enjoy all the time we get to spend together.  She is such a huge help on these trips. This was our first visit without Dad and it has been so different. He was always our comedian and kept us in stitches the entire time.

There is no way I can thank you all enough for lifting our family up in prayer this past week. We will do this all again in another 6 months. I will post again after we get the new puppy. We still haven't decided on name yet. Our picks are Charlie, Bo or Bentley. I am sure though that Madison will end up calling this dog just "puppy!"

Day 2 Birmingham

Today was the day we had to do a lot of walking downtown. We woke up to rain that was expected to last through lunch time. Out of all the times we have come up here, we have never had to deal with rain. Our first appointment was at 9:00 with the genetic doctor. Due to the rain, Mom dropped Madison and me off at the front of the genetics building and then waited for us to finish. This way we didn't have to park in the parking garage and walk 3 blocks.

The genetic appointment went very well. The doctor was very pleased with how healthy Madison has been able to stay and her growing vocabulary. After that we went to cardiology. This appointment always makes me nervous. The past 4 visits, we have been monitoring a minor leak in the mitral valve. Today, that leak looked better! However, the cardiologist did notice that the aortic valve is not opening properly. It is still opening well enough for the blood flow to and from the heart is not being affected. He said that it is still considered VERY mild but still something we need to watch. He also said that this is probably a sign of the disease progressing. Right after that statement he added that we might not ever see another change in the way the valve is functioning. We are praying that we won't see a change for the worse.

Our last appointment this afternoon was with the ENT. Madison had tubes put in December 2009. One of the tubes had already fallen out, but the tube in the right ear was still in there. Over the past 6 months, Madison has had a lot of drainage coming from the right ear. After he examined the ear he said that the tube needed to come out because it was infected and that was the cause of all the drainage. He tried to pull the tube out and Madison was screaming so hard, I asked them to stop. The doctor then asked if she was going to be put under anesthesia anytime soon and if so, he would pull it out then. When I told him we had no plans of such he decided to try one more time. He finally got it and it only took about a minute for him to pull it out. Madison was screaming so badly, but once it was out she stopped. The tube looked DISGUSTING!!! Hopefully now that the tube is out she won't have so much drainage and ear infections. We will have to wait and see. Tomorrow is our last appointment and that is with pulmonary. We will also get the results of the sleep study then.

Day 1 Birmingham

It is only Tuesday and it seems like this week has lasted forever. We left yesterday morning to come up to Birmingham.  I had pretty much packed everything Sunday night but just needed to pack the stuff we needed for Monday morning. I couldn't sleep at all Sunday night. My mind was racing thinking of things I needed to remember. Finally at 3:30 Monday morning, I woke Shane up and told him I was getting up. As soon as I snuck out of the bed, Shane moved over and snuggled with Madison. She has to be touching you while she sleeps. I turned on the baby monitor shortly there after only to hear Madison crying for Able (a.k.a me), and Shane saying, "Hold on, I'll go get Able." Well, as soon as I got in the room Madison yanked her oxygen off and started laughing. I guess it's safe to say that if I'm up, she's up!

I was actually thankful we were both up early. She had plenty of time to play in her walker and I wasn't rushed getting the last minute things packed. We left the house at 8:30 and pulled in to the hotel at 4:30. We had to get everything unloaded, eat dinner, and then check in at the hospital by 7:00.

I was very stressed about how the sleep study was going to go. We have attempted 3 in the past with only 1 going well. Our pulmonary doctor wants to do one once a year! God has a way of putting things into perspective. All the stress that I had been having and losing sleep over seemed minor when we got to the third floor of the hospital. As soon as we stepped off the elevator we saw the Critical Care waiting room. The room was packed and quiet and the look on those parents' faces said it all. My heart broke for all that were in there.  Suddenly my stress for this sleep study seemed minor.

I am thankful that the sleep study went well. Madison was such a trooper. She cried the entire time they were hooking everything up. We were able to sleep beside each other and we held hands all night. We will get the results of the study on Thursday when we meet with the pulmonary doctor. Today we met with the orthopedic and it was a good appointment. We were supposed to meet with a nutritionist at 2:00 but we we exhausted and my brain was fried. I canceled that appointment and we came to the hotel to nap. It was the best nap! Tomorrow we meet with the genetic doctor at 9:00. If she thinks we really need to see the nutritionist we will before we leave. At 10:30 we see the cardiologist and then at 3:15 we see the ENT. I will post updates tomorrow from those appointments. Thank you for all the phone calls and texts to check on us, but most of all thank you for all the prayers that you have said for our precious Madison. We love you all.

Last night before they got Madison all hooked up, we were able to FaceTime with Paul, Amy, and Aubrey.  We all enjoyed the laughs!

Finally!!!

I have had very good intentions of posting before now but time has been something I have not been managing well the past few months. Madison went through a very clingy stage right before Dad passed away. Luckily, that has now passed BUT...Madison will NOT stay asleep if she is by herself. I used to update the blog during her nap times but now I find myself taking naps with her everyday which isn't so bad. =)

I am really sorry to the many of you that follow this blog on a regular basis. I am really going to try and get better at this again. I couldn't think of a better day to update the blog than today. It is very hard to believe that TODAY is Aubrey's first birthday. We hate so bad that we can't be in Dallas to celebrate the big day with her, but we are going to have a party for her when they come this summer.

Aubrey Renee Cristina

  The week after Aubrey was born, Mom and Dad went with us to Birmingham. It was also the week after the Tuscaloosa tornadoes. I look back on that trip, and all the other trips that Dad went with us, and cherish all those sweet memories that were made.

  The next week Mom and Dad flew out to Dallas for Dad to meet Aubrey for the first time. This was when Dad started retaining fluid. There are days where all that has happened over this last year seem so long ago and other days where it seems like it was just yesterday.

  Well the Riley family does have some big news to share. We have decided to get Madison a puppy! About 4 months ago Madison started asking about a dog on a regular basis. She only carried books that had dogs in them. I told Shane I thought Madison was trying to tell us that she wanted a dog. Of course, Shane said no way! Of course, Madison and I changed his mind!

After doing a lot of research and being some what picky on what type of dog to get, we decided on a tiny toy poodle. It was very important to me that Madison always be bigger than the dog. Since she is in her walker 95% of the day, I did not want her to feel intimidated by a big dog. I also did not want a dog that sheds. I found a breeder in Augusta, GA and called and talked to her. After we talked I told Shane I wanted the dog to come from one of her liters. I didn't care how long we had to wait. Well, the puppy was born in March and we get to pick it up in two weeks.  The puppy will not get above 4 pounds and is black.  We (Madison and I) are so excited. Madison asks about this dog ALL the time!

We leave on Monday, May 7th to go to Birmingham for Madison's six month check up. This visit will last an entire week. She will be admitted to the Children's Hospital Monday night for a sleep study. Tuesday we see orthopedic and the nutritionist. Wednesday we see genetics, cardiology, and ENT. Thursday we see pulmonary. It is going to be a very busy week. We are going to stay Thursday night and then get up Friday morning and drive to Augusta to get the puppy.

While we are in Birmingham, I will post everyday...I know that's hard to believe! I wanted to post a few pictures and videos. If you are my friend on face book then you have already seen these. Thanks for following with all the latest on Madison. Please keep her in your prayers as the Birmingham trip approaches.

Madison giving Mommy the "serious" look.

I can't remember if I have posted this on the blog yet or not.  I recorded this in January and she still does this every day!  She has us wrapped!

Madison laughing at me.  This is something she gets to do everyday!  =)

Madison playing in Daddy's truck.

Madison was trying to tell us something last week and we could not figure out what she was trying to tell us.  This conversation that I got on video lasted almost 2 hours!



Celebrating our Dad

 

As many of you know, my Dad passed away December 22.  Amy and I have been talking that we needed to update both of our blogs, but agreed, that the first post should be a tribute to our Dad.  Amy updated her blog last night.  She put our feelings into words so beautifully that I decided to just share with you what she posted on her blog.  At the end of her post, I have added some videos of Dad.  We will cherish all the sweet memories we have of him everyday.  I was blessed to call him Dad for 28 years.  He truly was the greatest Dad we could ask for.

Celebrating My Dad ~ Amy Cristina

I know that my posts are usually all things Aubrey and after a six week hiatus, it will still be a little while before she makes her debut again.  This post is all about my sweet, precious, amazing father, Capt. Richard Holley, who passed away on Thursday, December 22, 2011 at the age of 64.  

The last nearly ten years of Dad's life have been filled with one medical obstacle after another: intestinal blockage, triple bypass surgery, complications with diabetes-including the amputation of toes, and ultimately, his diagnosis of advanced liver cancer on May 28, 2011.  Despite all these setbacks, my Dad never once wavered in his faith in the Lord and prayed without ceasing until the very end.  

There's so much about him I miss--his bright smile, beautiful blue eyes, loving hugs, rambling voicemails, encouraging words, contagious laugh, crazy stories--just to name a few.  But when those waves of sadness hit me, I give into them for a moment and then am reminded that I've only said goodbye to him for just a little while because of our shared faith in Christ, we'll one day be reunited forever in our eternal home.  

I'm not going to lie, I think my Dad was pretty awesome--as a son, brother, husband, uncle, father, grandfather, friend, boat captain, magician, Sunday School teacher, comedian, and story teller--and any other hat he wore.  He was the eternal optimist and had this uncanny ability to make friends with nearly everyone he met.  He was never ashamed to tell you about the things he was passionate about, namely, Jesus Christ and conservative politics.  He loved the Lord, his family, and his country.  

I'm thankful that Paul, Aubrey and I already had a trip planned home for December 10-17 and I got to spend some precious time with him before his death.  In the early morning of Friday, December 16, only hours after our family had gathered together in Mom & Dad's living room to celebrate Christmas, my mom called to tell me that Dad had stumbled and due to his increasing fluid retention, he could no longer bend his legs, making moving and walking a difficult task.  Paul and I left Aubrey at Shane and April's and raced to Mom & Dad's.  When we arrived, we were greeted by a dear family friend and an ambulance.  He was admitted to the hospital and on Saturday we learned that Dad's kidneys were slowly shutting down and that there was some fluid building in his lungs. We made the decision as family to bring Dad home on hospice, but due to his swelling and some bleeding from a few places on his arms, that did not happen until Monday night and Dad came home to a full house--April, Madison, Aubrey and me were all there with Mom to welcome him home. 

    

The two full days we had Dad home are still very much a blur, but our home was filled with love and laughter as friends and family came by to offer their love and support and spend time with him.  While I will always believe Dad knew it was the end, being the strong and courageous (and sometimes very hardheaded) leader of our family, he continued to fight and encourage us until the very end.  I'm so very thankful that Dad was still mentally 100% Dad even when his body was completely broken.  He always knew when someone walked in the door, could call them by name, and was constantly checking on Madison and Aubrey, and as usual, kept us laughing and smiling and trusting in the Lord. He lead our family in prayer on Monday and Tuesday night, still praying for everyone else before he pleaded with the Lord for healing of himself.  On Wednesday night, he was too weak to speak, but he held our hands as we prayed our nightly prayers over him. 

For as long as April and I can remember, we've been told the story from Dad of how my Granny's final words to her father when he died were that she'd love if it he could just let her know he'd made it to Heaven okay and then how on the night before his funeral, she had a very vivid dream in which she heard very specific words that were repeated verbatim later that day by the pastor, a dream which she shared with no one until after his service was over.  When Granny passed away in 2003, Dad was by her bedside, holding her hand in the family Bible as he read Scripture to her.  We knew Granny's heart so while we didn't need any outward confirmation of her eternal fate, I know Dad was praying that the Lord would visibly present Himself as He welcomed Granny Home. While that didn't happen for Dad, it most definitely happened for us and I know that the den at 1104 Carolina Ave was truly holy ground as we witnessed the beginning of Dad's eternal life with his Savior He loved and served so faithfully.  These words, taken from the beautiful and touching eulogy Paul gave at Dad's funeral, describe Dad's homecoming...

In the last night at home before he died, we held what turned into a worship service in the den, and each of his family around him bathed him in prayer--prayer that asked for healing and God's will.  Who but a family of believers can ask the Lord to take their beloved husband and father if it be his will? How does a family get that faith--it has to be taught by a spiritual leader.  It was taught by Richard. Richard passed away at 6:54 a.m. surrounded by his loved ones.  We believe he waited long enough for Madison to awake that morning so that he could hear her words--Hey Baba--one more time.  Just moments after she joined him at his side, Richard opened his eyes, looked upward, lifted his arms off the bed, and spoke the same words four time, each more clearly than the last: Hurry...

Then his breathing slowed to a stop, his heartbeat ceased, and he was gone.

We were fortunate to witness Richard peacefully leaving his earthly body, which was broken by disease, and joining his Savior in Heaven to receive the complete healing for which he prayed.  How could anyone ask for a better ending to their life and testimony? 

We spent Christmas morning looking at old home movies--the Holleys attempt at assemblying an above ground pool, birthday parties and Spring Break trips aboard the A.R. Holley, old magic shows performed by my Dad in area elementary school cafeterias, fishing trips with his high school classmates, and Dad's appearance on a local fishing show in the early 80s.  It wasn't exactly how I imagined spending Aubrey's first Christmas, but it was perfect.  

On Monday, December 26, we held Dad's visitation as the First Presbyterian Church of Lynn Haven, the church where he and Mom have faithfully served for over 30 years.  We were humbled by the number of people who came, standing in the cold rain, as they waited to pay their respects to their friend and my father.  His funeral service was on Tuesday, December 27, and we wanted it to be a celebration of his life and faithful service to the Lord.  We wanted the Gospel Dad cherished and knew so well to be shared and we prayed for the Holy Spirit to do mighty things in the hearts of all in attendance.  

I'll end this post with a few pictures that I could readily find of Dad through the years and with the closing words of his prayer that he prayed in his hospital room, with family and hospital staff gathered round, that once again gives witness to his faith in Christ Jesus:

Heavenly Father, above all, I want your will to be done.  And if it is in your will for me not to beat this cancer, so be it.  It just seems appropriate for me to stand beside you when we welcome Madison into Heaven's gates. 

The early years...that's Dad sporting the sideburns in the white shirt on the far right, at the wheel on one of the Davis Queen Fleet party boats, and rocking me in the nursery while he was probably singing a song that he'd tweaked the words to to make them include "Amy Holley" somewhere in the lyrics!

Mid 2000s...Dad and me dancing at Mark and Rachel Jones' wedding (2003), with April and Dad before her wedding, and Mom and Dad walking down the aisle after April and Shane's wedding (2006). 

2007-2011...Dad really wanted to be Paw Paw, but once Madison started talking, his name was Baba and he loved hearing her say it and relished every minute he got to spend with this sweet girl.  These pictures include the first time he held her in the NICU, an Easter morning tradition of family pictures in front of the church's red doors, and lots of hugs, laughter, and playtime together.  

Will, Ben, and Ella weren't his grandchildren by blood, but he loved them as if they were.  Here's Ben and Ella with Dad, Christmas 2008.

And I couldn't leave out his granddog, Scout.  She loved Dad for a number of reasons, perhaps some of the biggest being that she always got to ride shotgun in the truck, he gave her AMPLE amounts of table food, and that she could sit with him in the recliner, but only when Mimi wasn't around! ; )

These next few pictures are probably the most precious to me.  When Aubrey was two weeks old, Mom and Dad flew out to Dallas to spend a week with us.  It was towards the end of this trip that Dad started not feeling well and was just two weeks before his diagnosis.  In classic Dad style, he changed the words around to a song so he could add Aubrey's name (or something close, in this case, Aubrina) to it.  I'm sure that's what he was doing in the first picture below.  The original song is from the 60s and is called "Corinna Corinna." Around here its called Aubrey's Song and we sing the chorus all the time, I mean, ALL THE TIME.    

These pictures are from June, just after Dad started chemotherapy.  I know I posted the family pictures once before, but thought they were worth including again.  The one with Paul, Dad, and Shane still cracks me up.  I can't remember what the conversation was but love how they're hamming it up for the camera. 

I made another trip home in October and here's a few pictures I took from that visit.

And these are the last pictures I took of Dad, taken exactly one week before his death, as our family celebrated Christmas together.  The last picture is of me opening my most favorite gift for Aubrey, a recordable book of The Very First Christmas read to her by Dad.

I know that blog posts should not typically be this long, but when it comes to my sweet Daddy, I've got a lot to share.  But what can I say, my gift of gab is something I'm so thankful to have inherited from him! 

Dad seeing Aubrey for the first time.

 

Aubrey's first visit to Mimi and Baba's house.

Madison dancing to Baba's piano playing.

Dad singing to Aubrey.

This is our last video chat that we did with Dad.