Friday, May 11, 2012

Lucy's 4th Month - Jan. 17th to Feb. 17th

  This month was a crazy one... it might take me a while to get through this. 

   The video below just shows how difficult it still was for Lucy to hold her head on her shoulders. She is and has always been very happy. At this point though, I was starting to get concerned about how little control she had.

   This one is just of Jason entertaining us at dinner. I'm not sure how much Lucy enjoyed it though.  

I took the girls to get pictures made at portrait innovations.... Can't say I love them, but I had them done when Ella was 3 months so I wanted to do the same for Lucy.

From Lucy - 3 months
From Ella - 3 months
Here's a couple more:
Portrait Innovations
Portrait Innovations

    Here are a couple of pictures the next day, after a bath. She loves bath time and looking in the mirror at herself.  I love taking pictures in this makes them glow :)

After a bath - January 29, 2012
After a bath - January 20, 2012
After a bath - January 20, 2012
She sees a pretty girl!  January 20, 2012
January 20, 2012
    It seems like Ella Grace came out of the womb bearing weight on her legs...this is Ella at about the same time (3months). Although at this point, she had been doing this for a couple of weeks. Even as I write this (Lucy is almost 7 months...I'm really behind on my posting), she is still not doing this. When I look at Lucy, though, I don't see a baby that is behind! She is even ahead of Ella's development pace in some areas. Babies are such miracles! They are unpredictable. They are on their own timetables and set their own pace. There is no way to read a book or search the Internet and predict their progress. Only the creative hand of our Heavenly Father could author their steps. If Lucy had this "reflex" when Ella did, she could have broken a leg, her bones could have bowed, she could have damaged her spine...etc. Her bones had not ossified properly at this point. When I think about these things, I am in awe of my Lord Jesus, how can anyone deny His perfect timing?

 Ella Grace - 3 months

     Here is our big girl now, singing "We Fall Down".

Monday - January 23rd We had an appt. with Dr. Wellons, a neurosurgeon at Children's hospital. He was recommended by our orthopedic Dr. since at our last visit, he was concerned about possible instability in her cervical spine.

    The cervical spine begins at the base of the skull. Seven vertebrae make up the cervical spine with eight pairs of cervical nerves. The individual cervical vertebrae are abbreviated C1, C2, C3, C4, C5, C6 and C7. The cervical nerves are also abbreviated; C1 through C8.

From Lucy 3 to 4 months

From Lucy 3 to 4 months

Cervical Vertebrae and Supporting Structures

The cervical bones - the vertebrae - are smaller in size when compared to other spinal vertebrae. The purpose of the cervical spine is to contain and protect the spinal cord, support the skull, and enable diverse head movement (e.g., rotate side to side, bend forward and backward).

   We approached this visit very light-heartedly.  We had noticed that Lucy was not looking very often to the left.  We assumed that this was because she preferred her right side, since she had broken her left arm.  It had not sent off any alarms in my mind there might be something wrong.  Dr. Wellons sent us for a neck CT so he could have a closer look.  He was concerned that there was a "lack of bone formation between the anterior and posterior elements" of her vertebrae involving C1, C2, C3, and C4. 
   The CT showed that the "ossification centers were still quite open" - which mean that the bones were had not fused together yet and "does not appear to be an acute fracture but there does appear to be significant subluxation" - which means the the bones were not located in the proper place or "dislocated". :

CT - January 23, 2012
CT - January 23, 2012
X-ray - January 23, 2012
    Looking back I would not have done the CT - I found out later that it has 50 to 100 times the amount of radiation as a regular x-ray! It makes me sick when I think about it. Doctors keep telling me to not get hung up on that, but who's going to protect her if I don't? Ultimately, the CT did not change the course of her treatment. It served no more purpose than her previous neck x-ray's. I wasn't educated then, but believe me, I am now!
      Dr. Wellons told us that she would need an MRI. He needed to see if her spinal cord was being compressed. He told us that her neck was very severe and the course of her treatment would be very complicated. He said that we needed to try to hold off on surgical intervention for as long as possible. He did not know the reason that her spine was doing this and could not answer very many of our questions.

     I could hear him talking and I was trying to take it all in, but once again, I was in total shock. Surgical intervention? What was he talking about? What kind of intervention? MRI? What would that show? She had to be sedated! There was a increased level of concern about this because if she had an adverse reaction to anesthesia and had to be intubated, they could have difficulty placing the tube for her airway. Everything was happening so fast. We stayed in the exam room in tears for quite a while. I couldn't even think to form a prayer. I really didn't even know what was going on. Could we lose her? I hadn't even considered it.

   That night Jason posted an update on Facebook. We desperately needed our friends and family to pray for Lucy.

From Facebook....
From Daddy.....
    Want to give you all an update on our 3 month old, Lucy. We went to Children’s Hospital today to meet with a neurosurgeon about Lucy’s Cervical spine. They did a CT Scan and took some other X-rays. I don’t know how to explain it but here it goes. Most cervical spines are fairly straight and they go up towards the brain. Lucy’s c-spine bends at the top, meaning that her spinal cord is being stretched and could potentially have irreversible damage. They have ordered an MRI tomorrow to look at her spinal cord and brain at 6:00am. They will have to sedate her which in itself scares me.
   They will continue to give her a CT scan once a month. If her c-spine continues to bend, surgery will be necessary, but as of right now, because of her unknown disease where her bones are not ossifying properly, her bones are too soft for a rod or pin to straighten the c-spine. Ideally, they would like for her to at least be 1 year old before surgery. The surgeon told us that it would help a ton if genetics could determine what her specific dysplasia is. He also told us that whatever is causing her c-spine to bend the way it is is very rare.
   We definitely were not expecting this kind of news….but having said that, I believe that is what we have been saying about her before she was born. Like Joel said yesterday, the last month or so, things have been so good, I’ve gotten so comfortable with living the easy life because I have been so blessed. But knowing Lucy’s history, I firmly believe in prayer and that Jesus will take our prayers to the feet of the Father on Lucy’s behalf. Forward this on, re-post it on Facebook or whatever but I need prayer for my baby girl. Thanks

Getting Ready for Her MRI
At Children's Hospital - January 24, 2012
Meemaw entertaining Lucy while we waited - January 24, 2012

From Jason's Facebook:
Lucy just had her MRI and we are waiting to see her. The neurosurgeon is going to meet with us to explain the results. Specifically pray that there are no contusions or pressure on her spinal cord

This is the most beautiful picture I have of my sweet baby girl! This is a slice from the MRI that shows space around her spinal cord. 
MRI - January 24, 2012
  Cont. from Jason's Facebook:
   Huge praise to Jesus! The neurosurgeon said that the MRI looked good and as of right now, her spinal cord has plenty of room. I am just amazed at how many people have responded and re-posted my prayer. Thank you all and I love you guys. I know that Jesus is interceding for us. To God be all the glory. Now pray for that c-spine to stay in place for good.

From Mommy... (when I settled down enough to write):
Severe....Rare....complicated...3 words that have been used to describe our little girl's spine in the last 24 hours. None of which a parent ever wants to hear. This morning we didn't think good news was possible. She is too little for surgery, rods and screws would not hold and a cervical collar would be miserable for her and she would lose all muscle tone in her neck, and if her spinal cord was being compressed she could have irreversible paralysis. We needed to buy some time. Praise the Lord! That is exactly what HE did. She has plenty of room around her spinal cord right now and doesn't need a collar. We will need to re-evaluate next month, but right now we remain status-quo, which I have come to appreciate. Not only did we receive the best possible news; they didn't have to fully intubate her during anesthesia, and she woke up happy and feeling good. I know that the Lord has heard your petitions for Lucy! We feel it all around us, and it is reflected in so many little ways he has taken care of her today. Thank you so much for loving us enough to pray for for us! And thank you to Dejah Green for being back there with Lucy in the MRI!

    The night after the MRI, my dad and step-mother came up to our house to celebrate Christmas.  It was the first chance that we had to get together.  Ella had no concept of what we had gone through that day, but no matter, we were celebrating not mourning!
Christmas with Pawpaw and Mimi - January 24, 2012
Ella thought that putting her skirt on every one's head was hilarious!
Pawpaw - January 24, 2012
Daddy - January 24, 2012
Mimi - January 24, 2012

    We settled beck into a somewhat normal routine, but our lives changed dramatically.  This video was taken the day after the MRI. You can tell that she didn't look to the left, but it just never stood out before.

Ella is teaching Lucy her letters. She told me that when she grew up she wanted to be a teacher. She has a captive audience :)
Ella and Lucy  - January 26, 2012

    We found ways to include Lucy at the dinner table but not hold her. Looking at some of the things we used to using Lucy as a machine gun, makes Jason and I both a little sick. We could have really hurt her and we would have been devastated. We thank the Lord EVERYDAY...HE is in control.

Dinner theater - January 26, 2012

    This is where Lucy sleeps...right beside us. I assure you (lol) she is thoroughly monitored! She has an apnea/movement monitor, a video monitor that pans, and of course, we can hear her. I wish I could keep her right there forever.

Good Morning Lulu - January 27, 2012

    Up to that point, and even before Lucy was born, people had been recommending that we look into the early intervention services offered at the Bell Center.  Up until we received the news about her spine, I had not been overly concerned, especially since she was not continuing to have fractures. Everyone kept telling me that she looked like a normal baby, so I thought, why did my "normal baby" need therapy?   After the neurosurgery appt. though, I knew we were out of our league.  I knew that I wanted her to have the best chance to be normal....not just look normal.   Maybe she would be without therapy, but that was a chance I just wasn't willing to take.

Written Jan 28, 2012 5:34pm by Jennifer Slye (from Caring Bridge)

    Thursday I finally did it......I called the Bell Center. So many people have recommended it. Even before Lucy was born, people were telling me about it. But I have been waiting.....waiting for a diagnosis....waiting on healing....waiting for her to show me when she needed help. Its amazing, I have never heard of the Bell Center. Now, God has opened one door after another and behind each door has been a loving parent going through a similar experience, eager to share and connect. I have really needed those angels in my life. Tuesday after the results of Lucy's MRI, I knew it was time for us to call. God is doing great things in Lucy's Life, in our lives, but nothing is as I would have scripted it, but He is always comforting us, keeping us calm, carrying us, carrying Lucy.

   I'm excited about getting started at the Bell Center. They are an early intervention program for kids with special challenges. They have all kinds of therapists that will work closely with Lucy's doctors to help her safely develop muscle tone, and hopefully (prayerfully) begin to reach some of her milestones. God is always revealing himself to me and reminding me that I can trust Him. He is so merciful to me.
   Here is my Bell Center story:
   The day that I called, the director was there, but she was going out of town for the next couple of days. She wanted me to go ahead and fill out our application and fax it back. I also had to get our pediatrician to fax a recommendation for her. When I called the pediatricians office, they also offered to submit the paperwork to the state early intervention program! They have therapists that can come to her daycare and work with her and her caregivers, and even better....its FREE! I also remembered that the Mercedes Marathon is coming up and runners can raise money for the Bell Center. I called the director back and asked her if it was too late to have someone run for Lucy. She asked if I had anyone who could run for her.....I volunteered Jason. She said that they would make an exception for us! Thank you Lord for your timing! That being said...we only have two weeks for Jason to train and for us to raise $1300 for Lucy's tuition. Since Jason is going to run the half marathon, we will need roughly $100 per mile. I will post how to sponsor him as soon as I know.

   Today Jason ran for the first time...a little over 5 miles. I have no doubt that the Lord will give him the strength to finish the race. Jason is running for his little girl....grenades couldn't keep him from crossing that finish line.

   I spoke to the geneticist Friday. They are sending Lucy's records to a skeletal dysplasia group in England. Hopefully we will hear back from them next week sometime. Prayerfully, the Brits will have some insight our Dr's don't. In the meantime, we have another 4 week wait on chromosome testing and they are also testing for Metatropic dysplasia (as a caution to any googlers) we don't know this is what she has. My perspective on life has changed so much...each possible diagnosis makes the one before it so much more desirable. I'm trying to move away from thinking about her diagnosis and just concentrate on what we know. My only goal in life right now is to keep her safe and make sure her legs and arms keep moving. I know that only the Lord knows her destiny...but I'm committed to do my part.

    I found a product called hugga bebe at buybuybaby. I put it on her today for the first time and tears just rolled down my eyes. I have to write this company a letter. It gave Lucy so much freedom! Thank you hugga bebe! Gotta go, Jason is taking me for a much needed night out!

Lucy in her Hugga-Bebe

Huggabebe Heaven - January 29, 2012
Huggabebe - January 29, 2012
Watching TV - January 29, 2012

   We were fundraising...and trying to explain Lucy's condition when we didn't even know how to explain it.  It was difficult.  All we knew were the medical terms that had been thrown at us.  Jason wrote this on CaringBridge to try to help those who wanted to support us but didn't know what they were supporting. 

Hopefully a little insight :)

Written Feb 1, 2012 4:45pm by Jennifer Slye (From Caring Bridge)

    I have gotten a lot of feedback from people saying that they just don't understand what is going on with Lucy. I guess I didn't realize that from our side of it, it makes perfect sense, but to someone unfamiliar with all this medical jargon, they have NO idea what we are talking about. Jason sent out an email earlier trying to explain it better. Here it is below:

    As most of you know, we knew before Lucy was born that she had some unidentified problems with her skeletal system. At birth, she had 5 broken ribs and a broken forearm, and her bones were extremely soft. Now that she is 4 months old, we know that her bones are still abnormally soft, her long bones flare out at the end causing them to be shorter than average and very weak, and her spine is curved at a 55 degree angle at the base of her neck towards the front of her body. This is known as “cervical spine kyphosis,” and causes her spinal cord to be stretched, which can lead to paralysis if her neck is not supported well. Because of this, she has a difficult time holding her head up, she doesn’t look to the left or use her left side very much, and she doesn’t roll over. Due to the softness of her bones, Lucy cannot put weight on her arms or legs since this can cause bowing, so it has become very difficult for her to reach her developmental milestones. We have to be very careful handling her.

    In the last month the curvature of her spine has progressed from 45 degrees to 55 degrees, indicating a rapidly worsening condition. Although she does not yet have an official diagnosis beyond “skeletal dysplasia” for her condition, we are currently awaiting on the results of testing for a rare type of dwarfism called Metatropic Dysplasia. In the meantime, her condition is so rare that our neurosurgeon has had her records sent to a Skeletal Dysplasia clinic in Europe. We are praying that they will have some insight!

    Due to the nature of Lucy’s condition, we will need to enroll her in an early intervention program for children with special needs. The Bell Center for Early Intervention Program offers early intervention services to children at risk for developmental delay, often within a few days or weeks after birth. This is crucial because The Bell Center works closely with Lucy’s doctors and can help us learn how to care for Lucy and help her meet some of her milestones safely. We are so excited to get started there! The average annual tuition there is around $1300.

   We are also hoping to meet with William G. Mackenzie, M.D. Pediatric Orthopaedic Surgeon at the Alfred I. DuPont Hospital For Children, in Wilmington, DE. He is extremely familiar with the type of surgery Lucy will need and is the Chairman on the Medical Advisory Board for The Little People of America. We are also hoping to take Lucy to this year’s Little People of America National Conference in Dallas, TX, June 30 – July 6. They have medical clinics there that can help evaluate Lucy’s condition, and provide invaluable support to parents of children affected by this type of dysplasia.

FEB 5th - a HUGE day at the SLYE HOUSE!
From Playing "patty cake" with mommy - Feb. 5, 2012
From Mommy found her ticklish spots - Feb 5, 2012
From Checking out Momma - Feb. 5, 2012

This happened:
From Lucy doing tricks - Feb. 5, 2012
Then This!  It scared us to death!

Complete Illumination
Feb 8, 2012 2:05pm by Jennifer Slye (From Caring Bridge)

   Sunday morning as we were singing ....."one day He's coming, O Glorious Day!," I was thinking about a conversation that I just had with Ella Grace.

Ella: Mommy, Guess what? LuLu is alive!! She's not in Heaven anymore! (LuLu is her grandmother, who passed away in October before Lucy was born.) You know why, mommy?

Me: Why?

Ella: Because JESUS is alive! (She was so excited. Her voice was really high, like she was letting me in on breaking news). There was a guard at the tomb that let nobody in and nobody out, but after 3 days Jesus rolled the stone away and HE's Alive! So He's here, He's not in Heaven anymore! Sing with me Mommy, "Hallelujah! Jesus is Alive!"

(loving this conversation) I explained to her that this happened a long time ago and after Jesus came out of the tomb he ascended to heaven. That means He sort of flew there.

Ella: Jesus cant fly! He doesn't have wings!

We talked about how Jesus can do anything and be anywhere, and one day He was going to come and take all of us to heaven with Him.

Ella: All of us? (Wow)

She had a lot more questions. Seeing her discover these things for the first time and to see her wheels turning trying to make sense of it all, was so priceless to me.

   I was thinking about that Sunday morning as we were singing and I envisioned Lucy with a strong straight neck, strong bones, running around and laughing. It was overwhelming. I wrestle with being thankful that God is drawing us close to him, revealing himself, and his nature, and begging him to take it all away. At that moment I was thinking....Nothing is too big, too scary, too overwhelming. This life is just a blink. I don't know if Lucy will be able to run in this life...The Lord is authoring this story and I cant even see the next chapter, much less the ending, but I know we don't have long to wait before our visions will be our realities.

    More often I'm the one handicapped. Handicapped by my sin. Lucy's name means: Emma - Whole, complete Lucy- bringer of light, illumination. Lucy, already in her short life, is illuminating my heart, showing me my desperate need for a savior. I believe that I am living in a "Self imposed spiritual poverty," I'm going to heaven, but not always living victoriously, joyfully, believing that their is no obstacle too big for God. Living in fear, worry, doubt, and fatigue, having a form of godliness but denying the power there of. But I feel the Lord drawing me back to him. I feel his embrace. It feels so good. I want to walk in victory, where nothing matters but the glory of the Lord. Lucy, feels the Lord, I know it. She laughs all the time, she is so happy! We are not that funny! She is inspiring me!

   The devil, always on the prowl, continues to try to find footholds. Saturday Jason was going to go running. He got ready and started looking around for his Zune (MP3 player). He couldn't find it anywhere. He was convinced that he couldn't run without it. He was having a panic attack. Finally, He decided that he would just go run as far as he could without it. He ran 8.2miles in an hour and a half and said that he could have kept going! He felt much better physically too! Praise the Lord. We are going to give Him Glory! We have also been feeling guilty about the money that so many people are generously donating. It took a friend to tell me - "It's just like the devil, to take a good thing people are doing out of the goodness of their hearts, and make it negative by making the receiver feel guilty, since he couldn't harden their hearts against giving." Our pride was causing us to miss out on an amazing blessing. An outpouring of love, that we never expected or deserved. One that could only come from the Lord. I will not diminish it. Thank you Lord for ALL that you have given us.

Thank you so much to those of you who have already given. Our hearts are full. We are overwhelmed. We are so unworthy, but so blessed. Thank you for loving us. Thank you most of all for praying for us. Even facing the frightening unknown, we feel the peace of the Lord. Please pray specifically for there to be no progression in her spine curvature, heck!, I'm praying for an improvement! I don't want to limit God. I know He's still in the healing business!!

One final Praise report...and its a BIG one...Sunday night, Lucy started rolling over!

I have called the neurosurgeon to see if it is OK. I'm still waiting to hear back. In the mean time, they are recommending that we do our best to keep her from rolling over. Which I will definitely comply with. But it doesn't seem to be hurting her. I am just amazed that she has the strength to flip over! We don't give her many opportunities to do much moving around. She continues to amaze us. We see the Lord speaking to us through her even though she cant communicate. Strength, hope, faith, love. I see our Savior every time I look into those baby blues.


Feb 7th - I had a birthday :) I know its in a Christmas bag with pink tissue paper...but hey, I got a gift!
From My 33rd B'day - Feb 7, 2012

I love this sweet picture. Ella is learning to be extra gentle with her little sister.
From Sisters - Feb 8, 2012

Thursday, Feb 9,2012 -
    Getting Ready for the Marathon! Nonnie found Lucy this adorable hat because its supposed to be freezing during the race! We also had our house appraised today. We are trying to refinance and save some money with the low rates. Its never worked out for us before because our PMI would skyrocket and cancel out our savings. Now, thanks to the new government HARP loan, it may be possible, we have to wait and see. We didn't even get to clean the house before the appraiser came, so I'm a little nervous.

From Lucy 3 to 4 months

    Friday, Feb. 10 - We had an appointment at the Pulmonary Clinic at Children's hospital. I requested the appt. because sometimes kids with spinal problems have sleep apnea. While we were there, they did a chest x-ray and said that her lungs were "streaky". This suggests that she is aspirating her formula because of her reflux and could lead to lung infections. The Dr. recommended a sleep study to rule out apnea and a barium swallow to see if she is aspirating. Great.

   The Dr. scheduled the sleep study for Sunday night after the marathon.

    Meanwhile, The Mercedes half-marathon was fast approaching!! It was a very exciting weekend! Saturday, we drove the course. Then, we attended Carbs for a Cause, hosted by the Bell Center, at the Alabama Sports Hall of Fame and we sat with the previous years winner! He was a super nice guy and we had a wonderful time!

   Sunday, Jason woke up while it was still dark to get ready to go to the race. He left while we were still sleeping. I think it was around 25 degrees at 7:00 when the race started. I knew I couldn't get the kids up that early and get them out in that cold weather, even though I regretted not being at the start of the race. Jason's mom and Step-dad, met him and saw him start the race and apparently he's a camera hog, Fox 6 news showed him several times that morning during the course of the race :)

    I had been given strict instructions to meet him at 8:30 in 5 points downtown. I know how to get there normally, but during the race, I had no idea how they would have the roads blocked off and if we could even get close to where he wanted us to be so we could cheer him on. Clearly the Lord was being petitioned on our behalf that morning, because by some MIRACLE, I turned down a random street, not knowing where it would lead and it took me directly to the Chick-fil-a parking lot in five points. We avoided ALL spectators. Unbelievable! I got out, got our poster, and made sure Ella was bundled up. Lucy was asleep, so I made the executive decision to not get her out of the car in the cold weather. We rushed to the sidewalk and waited for a few minutes. Literally, after about 2 MINUTES of he came! We never saw him, he saw us. The Lord placed us in a location with no other spectators, so it was easy for him to spot us!

From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months
   We jumped back in the car and rushed back to the finish line. We sat there for a little while. I didn't want to get the kids out of the car too soon. I was trying to calculate Jason's pace based on where we met him at the half-way point. I went out and stood on the street to watch for him. Ella had wanted to run the last little bit with him but she was too cold to stand out there waiting on him, so I told her to wait in the car and I would come get her when it got closer to the time I expected him to arrive. I assumed that his pace would drop slightly as he got tired during the last 6.5 miles. The first 6.5m he had done in practically an hour flat. My phone rang, it was JASON!! He wanted to know where we were because he was finished! We had missed him! I was sad...but Jason's step-dad got a great picture of him crossing the finish line.

From Lucy 3 to 4 months
From Lucy 3 to 4 months

He had finished in 2 hours flat!  His pace had not dropped at all!  Unbelievable!
From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months

   Not only had he accomplished something so amazing!! God was really showing off because we raised $1300 for the Bell Center's budget, which goes toward there operating expenses and paying our therapists, and nearly $8000 for Lucy's medical expenses!!  In two weeks!!  We had enough to pay for our medical bills (we were still paying for our ambulance ride and all of our ER visits), our Bell Center Tuition, a couple visits to Delaware and Lucy's Helmet!  I am still overwhelmed by this. 

Philippians 4:13, Mercedes Marathon Weekend (From Caring Bridge)

Written Feb 13, 2012 4:28pm by Jason Slye

I can do all things through Christ who strengthens me.

    The big day finally came! It was time for me to run the Mercedes Half Marathon (13.1 miles) for my precious baby girl Lucy. What a wonderful experience it was just being out in that atmosphere and running through historic areas of Downtown Birmingham. Although it was around 20 degrees the whole time, it was only cold to us “runners” for the first 2 blocks or so. There were a lot of emotional moments in the race, but none more so than the beginning while we were in the runner’s chute. They had some inspirational music blaring, the Emcee was speaking motivationally and I kept picturing the photo of Lucy on my back and I was telling her “Daddy’s running this race for you.” It was all so overwhelming that my eyes were welling up with tears. Of course if anybody would have asked me if I was crying I would have just said that the cold wind was irritating my eyes. When the race began, I prayed to God for endurance to finish. I kept telling God that I was running for Lucy and for Him and if He allowed me to make it through, He would be exalted. Clearly, God used my physical body to run but He would be doing all the work. My legs felt fresh most of the day and my lungs were perfect. To God be the Glory!

For the skeptics, let’s take a look at my extensive training schedule leading up to the race:

Thursday, 1/26/2012 – Wife informs me that I need to start training to run a half-marathon for Lucy. Tells me I have two weeks to train. Initial reaction – Picked jaw up off the floor.

Saturday, 1/28/2012 – Ran 5.2 miles in 55 minutes.

NOTES: Exhausted! Ran with an old pair of shoes with some of the tread missing from the bottom. Left foot injury, will not be able to run again until it heals.

Friday, 2/3/2012 – Got a new pair of running shoes.

Saturday, 2/4/2012 – Ran 8.2 miles in 1 hr 25 minutes.

NOTES: Foot feels 90% but I need to train. Felt pretty good after that run.

END OF TRAINING – Total Training Time: 2 hrs 20 minutes

   That's right! I AM NOT A RUNNER! I HAVE NEVER BEEN A RUNNER! The most I have run before training was 3 miles. And I only did that a handful of times. My goal was just to finish. I was stressed out about the lack of training I had done, but I felt as if God was telling me, "Don't worry, I got this. You just run and I will provide the rest."

   I told Jennifer to be at 5 Points South at 8:30am. I was way ahead of my training pace and I got there at 8:03am. I was so depressed thinking that they were going to be late and miss me as I passed tons of spectators. Finally, I saw them around the corner past Chick-Fil-A all by themselves. They couldn’t have timed it any better. She had just parked the car and gotten Ella out and was holding up a sign for me. I ran over to them and gave them kisses. That gave me a huge surge of energy as I went into the last half of the race.

   Not only did I finish, but I finished in 2hrs flat. I finished 1,290 overall out of 3, 684 runners. How could I do that on my own? The answer is, I couldn't have and I didn't have to. I feel so blessed to be able to share this experience with so many of you that have been praying for us and supporting us.

  Believe me when I say that running a half-marathon wasn’t even close to being on my radar of things to do. I don’t even like to run. But I really can’t put into words how exhilarating it was to run in the half-marathon. It was amazing. Especially being a BellRunner and running for a precious little angel….you don’t need any more motivation than that. (Extra Bonus: BellRunners get access to the VIP area where they set up personal massage tables for you!) I would encourage any of you that are even slightly interested to think about running next year. Remember, if YOU think YOU can’t do it, take YOU out of it and let God lead. Remember Philippians 4:13.

What an amazing day!!

I hate transitioning from that story to this one.
That night, we showed up at the hospital for Lucy's sleep study.

She was extremely happy about being there :)
From Lucy 3 to 4 months
From Lucy 3 to 4 months
Then the real fun started ... I had to take her out of her thick warm sleeper and put her in this thin one.  Then they started putting this sandy paste all over her and attaching wires.
From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months
From Lucy 3 to 4 months
   First of all, the temperature in that room had to be 60 degrees. It was FREEZING! Secondly, the alarms kept going off, none of the equipment was working properly. There were a thousand wires coming out of my poor baby and there was no way she could get comfortable. She whimpered in her sleep. Finally, and possibly the last straw, there was no refrigerator to put her bottles in to keep them cold and no microwave to warm them up. Lucy was still eating every three hours. When she would wake up and become aware of what was going on, she would go berserk! I then had to page someone for a bottle...after waiting for them to bring it, then I would have to send someone to heat it. It never came back warm enough and I would have to send them to heat it some more. This would have all been resolved if they would have let me warm up her bottles.
    The nurse kept telling me...don't get her too warm or we wont be able to get a good reading. Are you kidding me?..It was not possible to get warm! I was fully dressed and covered up in about 6 blankets and I was still freezing! They would only let me put a thin sleeper on her and her blanket. I was livid! She was literally tortured for 10 hours and finally they came in and said they would be back shortly to remove her leads. I had already been wrestling with loads of mommy guilt for even putting her through all of this so the second the nurse closed the door, I started pulling all of the leads off of her. I wasn't about to wait another hour only to have someone come in and man-handle her. Of course 45 minutes later when someone came in, I had already removed everything and tried to clean her up.

Finally, she could rest.
From Lucy 3 to 4 months
From Lucy 3 to 4 months
   After another hour a doctor came around and said the study showed normal sleep patterns.  I can not fathom how they could have possibly ascertained this.  Between the equipment not working, waiting forever with a screaming baby for a bottle, the Arctic climate, and the uncomfortable wires, I don't think she slept for an hour straight all night.  To top it all off, the leads had made horrible sores on her head where she was rolling her head back and forth all night.
  It was not a good experience to say the least, but I really am thankful that her sleep was normal and we don't EVER have to do that again!

   We got a call from our geneticist....after the tests for knesit and ehlers-danlos came back negative, they didn't know what to test for, so they did a chromosome array.  The Chromosomal array evaluates important areas of our chromosomes to see if there are extra or missing DNA segments that could cause birth defects, mental retardation, or other medical or learning problems.  The Array came back normal.  So now we continue to wait and see if the specialists from across the pond come up with anything.

My big Girl got a new didn't leave her head for days!
From Lucy 3 to 4 months
Finally we made it!! 4 MONTHS OLD!

This month's big milestones:
  - She had her first day of daycare :(
  - She laughs and squeals now.  She is ticklish under her chin.  She smiles really big when you talk to her.
  - At 3.5 months she rolled over!  She kicks her legs up then throws them down or swings them over to try to turn over.
  -  She trys to pull her neck and head up from a laying down position.
  - She cries when daddy!
  - She takes her paci out of her mouth herself and tries to grab objects.
  - Still not sleeping through the night. Stays congested all of the time.

From Lucy 3 to 4 months