Happy Baby

We have hit another milestone! Wyatt is eating baby food and let me tell you, he is a champ!! A week ago he started with green beans. His first reaction was a shutter and gagging. But once we got through the first round of them he was eating them up! Tonight we started peas. He absolutely loved them!! If he is anything like his dad then he is going to like anything put in front of him.

Wyatt is starting to really come into his own. His little personality is so unique. He is happy for the most part only gets upset when he is hungry or when he has a dirty diaper. He also gets a little annoyed when we push him hard during his PT sessions – we figure this is normal though. We know that pushing him now will have big results later on. It will be worth it in the end.

Enjoy the video of our precious guy as he proves how much he loves to be tickled!

I’m Really Not Crazy…

The last Friday in September was one that I will never forget. Wyatt had been crying all day. He used to cry a lot but not ALL day long! My suspicion was that he was in pain. Wyatt had shown other signs of pain off and on since his birth but looking back on it I guess I was in denial that there was something really wrong. He would wince when I would pick him up and he would cry when we tried to turn his head to the right. But, never had he cried all day.

By the time it was 5pm I finally decided that I needed to call the doctor. I reached the neurologist that was on call that night. His advice to me was that if I was that concerned for my child and if I thought he was in pain then I should take him to the emergency room. So, Joe and I did just that. We were taken back right away. When a 7 week old is brought to the ER they really don’t make you wait very long! Because of their attentiveness I was hopeful that something was going to be done. Instead, I was disappointed, frustrated and angered.

The nurse and doctor both asked why we thought Wyatt was in pain. We explained to them that he had been crying all day and that when we picked him up he would wince like he was in pain. After checking Wyatt out we were told that they didn’t think he was in pain. The doctor then proceeded to say that “you are just sleep deprived” and that was the reason we was concerned about him being in pain. The nurse then followed up with “you have been through a lot in the past few months, maybe you need to talk to a counselor.” REALLY?!? They were seriously going to act like I was crazy and just overreacting?? It was all I had in me not to cuss. So, I just cried which made them think I was even more nuts. The whole way home I complained to my husband about how they were more concerned with my mental health than with Wyatt. I was so mad!

At our next Neurologist appointment, which just happened to be soon after the ER visit, I brought all of this up to the doctor. He said that if we were concerned with him being in pain then we should probably have an MRI performed on him. He planned on scanning various parts to check for other things such as tortuous vessels, something found in many Loeys Dietz patients, as well as other dilations in any other vessels.

We had the MRI done the day before Thanksgiving. Everything went well. We were on our way home and before we could even pull out of the garage we were getting a phone call. Wyatt had a spinal malformation and his spinal cord was crimped. Within 5 days they had us going back to the ER that told me I was crazy in order to get Wyatt fitted for a collar that he would wear until his surgery date.

All of this to say, always go with your gut. As a mother we have instincts when it comes to our kids. If you think there is something wrong with your child get it checked out. If you are not satisfied then go to someone else. Just look at our case, I could have just taken their word that nothing was wrong and my son could still be in pain and have a crimped spinal cord. You are your child’s only advocate, don’t underestimate yourself.

One Proud Mama

I am going to take this post to brag on our little guy a bit. Each day we continue to see him get stronger and stronger. He is such a happy baby and he is starting to do new things every day.

Last Friday when he had physical therapy his therapist was impressed at how much he had improved in two weeks. He was able to hold his head up 15 second while on tummy time (his goal was 5 seconds). When she pulled him up by his hands to do a “baby sit up” he actually pulled his head up towards his chest. He had never done this before. When he did it I gasped out loud and started to cry tears of joy. I could not stop thanking God for the fact that he could do it.

When you see so many different doctors do this “baby sit up” with your son and he always has a head lag you get somewhat used to it. You get used to the doctors saying that he has low muscle tone. This head control and neck strength is a small victory but still a victory. This victory will lead to rolling over, then to crawling and then to standing and walking. This is one small victory that will lead to many others. I can’t wait to witness all of these victories as they come.

The Inclusive Church Blog Interview

Today we were featured on The Inclusive Church blog. Check out the interview below. Also, check out my friend Amy’s blog at http://theinclusivechurch.wordpress.com/2012/01/17/when-the-childrens-pastor-is-impacted-by-special-needs/.

When the Children’s Pastor is Impacted by Special Needs

Kristy Moser and I became friends last year when we were both slated to teach inclusion workshops at a children’s ministry conference.  We immediately bonded on both a professional and personal level and have since worked together on a number of projects.  For the past six years Kristy has served as the Early Childhood Pastor for Crosstown Children’s Ministry at Montgomery Community Church in Cincinnati, OH.   Part of her responsibilities include overseeing the church’s special needs ministry, which serves 26 children and families each week. This past summer, Kristy gave birth to her second son, Wyatt.  As you will learn below, along with Wyatt’s birth came a new and unexpected perspective  on special needs ministry.  It has been a joy and privilege to walk alongside Kristy in these early days, as she seeks to understand what it means to parent a child diagnosed with Loeys-Dietz Syndrome (LDS).   And I am grateful that she has been willing to provide such a vulnerable and helpful interview for this blog.

Kristy recently launched her own blog, The Road Less Traveled, which has generated a flood of interest.  You’ll understand from Kristy’s interview with me (below) why her new blog has been so well received. ~ Amy

*************************************************

AFL:  Being on the staff at a large church naturally places you in a visible position. Was it hard for you decide to go public with your son’s diagnosis?

KM:  When Wyatt was first born we knew something was going on with his health.  From the very beginning we were public in asking friends to pray for Wyatt.  But because we didn’t have all the facts, we had a more limited circle of people who knew all the details.

I also quickly learned that people weren’t sure how to react when I indicated that Wyatt was being tested for some potential problems.  The interaction sometimes felt awkward because I didn’t want people to always feel pity for me or for my child.  I soon discovered that it was best for everyone if I shared less while requesting prayer through Wyatt’s first round of tests.  I then conveyed our intent to share more information after our family had the opportunity to receive and process the results.

Once we received and understood Wyatt’s diagnosis, we shared the information publicly. Since I serve in a visible staff position, a lot of people approached me with questions and offered prayers.  And it has been therapeutic to talk about our experiences.  Sharing openly has allowed me the opportunity to educate people about what our son was going through and for how they can specifically pray.  I KNOW it is the power of prayer that has helped Wyatt thus far and I KNOW it is through these prayers that our family has been strengthened.   Talking publicly has also provided a way for us to show how God has touched Wyatt and our family.

AFL:  Why did you ultimately decide to start “The Road Less Traveled” blog?

KM:  I have discovered that a lot of people have taken a quiet interest in Wyatt and our family’s journey.  I thought the blog could provide a way for interested friends to receive regular updates on Wyatt’s tests, surgeries, doctors’ appointments, etc. and to know how we wanted to be prayed for.  I prayed about the idea of the blog and began to feel God’s affirmation in using it as a tool to connect with other families.  My vision for the blog is that it will become more of a support group for parents who have kids with rare conditions. I am looking forward to featuring interviews on the blog, highlighting other families with kids with lesser-known diagnoses.  I would love to see the blog become a connection place for parents like us and for them to find support through an online community.

AFL:  Before you ever gave birth to Wyatt you were overseeing MCC’s special needs ministry and even helping other churches to become more inclusive.  Now that you have walked the journey of the last few months, how has this experience changed your perspective on special needs ministry?

KM:  The biggest conviction that I have received since Wyatt’s birth is that in the past I did not show enough grace to families impacted by special needs. I thought that I understood what it was like to parent a child with special needs, but really I didn’t understand. In the past when a parent of a child with a difference or disability would come to church and have an immediate expectation for accommodation it would frustrate me.  And when families were perpetually late for church (whether their kids had special needs or not) it would drive me nuts! Once you deal with something “extra” like we have with Wyatt you can better appreciate things from the view of these parents.

Wyatt has obstructive sleep apnea and when he was first born he had to be on oxygen even during a car ride.  So, it literally took us 20 minutes to get him in the car before we started driving.  Hooking Wyatt up to the oxygen and a pulse oximeter was pretty trying.  So as we adjusted to the new normal, we started off being 15 minutes late to every appointment in the beginning.  This experience gave me a whole new perspective for parents rushing to get to church on a Sunday morning.  I realized that for many impacted families, it literally takes all you have emotionally and physically just to get the family in the car.  Now I can appreciate how hurtful it would be to be turned away after finally arriving at church.  As a person who theoretically could be a gatekeeper, granting or denying access to a children’s ministry, I will not be a hindrance for these parents.  They NEED to get to church just like I NEEDED to get to church.

AFL:  You’ve shared with me the tremendous interest and support that your blog has generated. Why do you think so many people have connected with your blog?

KM:  Part of the reason is because I serve in a visible position at my church.  We have a great faith community that has wanted to know what was going on with our newborn and how to support us.  I also think that people are drawn to the situation because it involves a baby.  So many people have said to me, “I didn’t know how you watched your baby go through that.”  In addition, because Wyatt’s condition is rare, the blog has provided an avenue for people to answer their own curious questions about his diagnosis.

AFL:  So often I am talking on The Inclusive Church Blog about autism or other more recognized diagnoses. Wyatt has a lesser known diagnosis. Tell us about Wyatt and what makes him unique.

KM:  Wyatt was born in August 2011. He is our second son. He loves to smile, giggle, coo and eat –a lot! Wyatt has a rare connective tissue disorder called Loeys-Dietz Syndrome (LDS).   LDS was discovered in 2005 and currently there are only 300-500 cases worldwide. Wyatt is the only individual in our area that has LDS (that we know of) and he is the only known case with his particular mutation.  Because the exon that is mutated has never been seen before, doctors are not 100% certain how Wyatt will be impacted.  LDS and Marfan Syndrome have many of the same characteristics and Wyatt may take on characteristics of either diagnosis.  No two cases of LDS or Marfans are the same. So, for Wyatt his manifestations are an aortic root dilation, a cervical spine malformation, obstructive sleep apnea, tortuous arteries and vessels in his brain and heart area, widely spaced eyes (the whites of his eyes have a bluish tint to them), micrognathia (a small jaw) and arachnodactyly (long fingers), hyper-mobility and a mild case of low muscle tone. Wyatt also is very long and thin. He has long arms and legs.

AFL:  Speaking as a parent of a child with a less recognizable diagnosis, talk a little about the unique experiences of a family like yours?

KM:  I don’t really get tired of explaining the diagnosis because it is kind of therapeutic.  It does get old when doctors want to get their hands on Wyatt because they have never seen anyone with LDS. Many times his doctors will ask if their physician friends can take a look at him because he is so unique.  And I let them because I know in the end it might help someone else.  But it does get tiring and he is my baby, not some test case! Medically we have to work very hard because no one really knows what to expect and it can be frustrating to “just wait and see.” Many times we have to take the initiative when we think there is something going on with Wyatt and we want him evaluated.

Other parents who have kids with special needs understand what we are going through. Regardless of whatever their kid has going on, they have been where we are. They have grieved, they have cried, they have seen sorrow and most, like us, have seen the joy too. There is a HUGE comfort in finding someone whose child has the same condition in a rare case like ours.  On the Loeys-Dietz Syndrome Foundation website there is a forum set up for affected individuals and parents.  In the beginning of our journey I wrote a post, seeking connection with other moms.  Several readers contacted me, one has even friended me on Facebook.  It is comforting to see pictures of her little girl, who is about a year and a half older than Wyatt. It gives me hope that one day Wyatt will be able to walk and do things like a typical kid. The biggest thing this mom did was tell me that we had a new family, a family who knew what we were going through and who would be there for us. This was huge!

AFL:  Has your children’s ministry team had to make any adjustments to accommodate Wyatt?

KM:  We have not taken Wyatt to our nursery yet. I feel like our nursery staff would be totally capable of taking care of him but I simply cannot compromise his immune system.  As we consider putting Wyatt in the church care, we only anticipate adjustments related to his gross motor skills. He may need extra support when sitting or learning to stand and walk. Looking further ahead, I’m not really sure what adjustments will be needed for Wyatt.

Everyone on our church’s Next Gen team has been extremely supportive of our family and of Wyatt. They have shown us grace and love when we needed both. They have prayed for us and with us. I could not ask for a better team to work with.

AFL:  Has anyone said anything that made you want to cringe? What are some ways people have provided appropriate support? 

KM:  People will always say things that don’t make sense when they don’t understand what is going on. Because Wyatt wears oxygen at night he has to wear these things on temples called tendergrips. They look like round band-aids. So, people will come over to look at him (like they do with every baby) and say, “What are those things on his face?” It gets somewhat old. So, I try to be nice and just explain it to them. Sometimes I just want to tell people to mind their own business and not worry about it. J Early on (before we had a diagnosis and before I launched the blog) one person emailed me with questions about Wyatt’s issues.  After I explained some of the details, they responded that they had a special place in their heart for “kids like Wyatt, kids who were disabled.”  While well-intentioned, those were hard words to read.  Wyatt is not disabled in any way.  I know that the person who reached out to me had the best of intentions – they just didn’t realize how they came off.

The best thing that people have done is to simply pray for us. People have brought us meals and visited with us. We have been so thankful for their acts of kindness.  But prayer is honestly the most appreciated demonstration of love.

The Voice of Truth

Early on in both Ayden and Wyatt’s life God revealed a song to me about each of them that describes them and what I see for them in the future. Both of the songs fit their personalities so well. Ayden’s song is Lead Me by Sanctus Reel. Since Ayden started walking and talking I knew without a doubt that he was a born leader. The way he is among other kids, the way he is with adults and how he acts in general shows me that he has leadership qualities. My prayer for him is that he will remember that no matter how strong he thinks he is, he needs God to lead him so he can lead others. For Wyatt the song is The Voice of Truth by Casting Crowns. This is a great song for Wyatt. When I hear the words to this song I automatically think of Wyatt and how throughout his life he is going to have all kinds of voices talking to him – doctors and society in general. But, Wyatt will need to focus on the Voice of Truth and what God says rather than what the doctors say he can or cannot do. I have already seen this as we work on his eye sight.

We have struggled with Wyatt’s eyesight since he was about 2 months old. When he was 3 weeks old he had a complete eye screening to make sure that his eyes worked and that everything was connected inside of them. At that point everything looked fine. At 2 months old we had his eyes checked again because he was not tracking certain things. Once we had an ophthalmologist take a look at Wyatt they noticed that his eyes would turn outward from time to time. So, we started patching his eyes. We would patch one side for 2 hours a day and then the other side for 2 hours the next day. Wyatt hated the patching and so did we. He would cry and just generally be mad about it.

The next month we went back to the Ophthalmologist. He seemed to think that nothing had changed and that he was not even sure that Wyatt was seeing anything at all. He had no idea what to tell us. He said that Wyatt could possibly have delayed eye maturation, where at some point when he is between 6 and 12 months of age he could wake up one day and be able to see. The doctor seemed to think that we did not need to patch anymore as he did not think it would help. The doctor also came out and said that he had not even reviewed the MRI test before our appointment – he wanted the test to be done in the first place. The doctor said that he wanted us to come back in 3 months and we would see what was going on at that point. This appointment was very frustrating for me. I KNOW that my baby can see me. He looks at me. He looks at my husband, at my other son and at his hands. There are many times that he will follow toys in front of his face. I just wish that Wyatt could tell us what was going on so that we could have a definite answer. I know without a doubt that Wyatt is not blind.

Because of my frustrations with the doctor and the appointment I decided to get a second opinion. While I was working one day I talked to three different people within 10 minutes who all recommended I take Wyatt to Dr. Myles Burke. I decided that it was a sign from God that we needed to go. So, I was on the phone that day and made an appointment. We will be going to this appointment at the end of January. I think that we will have a very different outcome from this appointment than the others.

If I just sit around and listen to every doctor and everything they say I may waste valuable time that we could be using to do something else. I cannot do this. I cannot waste valuable time, especially when it comes to his eyesight. Wyatt is too important. I am sure that Wyatt will struggle with this kind of thing for the rest of his life. He will have people who will tell him that he may not be able to do something. I will continue to remind Wyatt that he needs to keep his eyes focused on God and listen to His voice rather than the rest.

Oh what I would do to have
The kind of faith it takes to climb out of this boat I’m in
Onto the crashing waves

To step out of my comfort zone
To the realm of the unknown where Jesus is
And He’s holding out his hand

But the waves are calling out my name and they laugh at me
Reminding me of all the times I’ve tried before and failed
The waves they keep on telling me
Time and time again. ‘Boy, you’ll never win!’
“You’ll never win”

But the voice of truth tells me a different story
And the voice of truth says “Do not be afraid!”
And the voice of truth says “This is for My glory”
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a Sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they’d have had the strength to stand

But the giant’s calling out my name and he laughs at me
Reminding me of all the times I’ve tried before and failed
The giant keeps on telling me
Time and time again “boy, you’ll never win!
“You’ll never win”

But the stone was just the right size
To put the giant on the ground
And the waves they don’t seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me

I will choose to listen and believe the voice of truth

The Voice of Truth by: Casting Crowns

---

The Name Game

I think it is interesting when you find out the meaning of someone’s name. Often times, the meaning will remind me of the person and I think, “wow, your parents picked the right name!” For example: My friend Anna, her name means favor and grace. She both shows me grace regularly and also possesses grace. My son Ayden, his name means fiery and let me tell you – it fits him to a tee!! When we picked the name Wyatt we loved the meaning. It’s meaning is ‘warlike strength’. Little did we know when we picked out his name would it be so true of our little guy. Wyatt DOES have warlike strength. He has become my little tough guy. He has been medically through more in his 4 months of life than most people in their entire life.

People have asked what the story is behind the name of our blog. The Road Less Traveled comes from the fact that raising children with special needs – either medically or educationally is a road that most do not have to go down. Also, Wyatt’s syndrome is a very rare one. In fact, Wyatt is the only one with his specific mutation. So, the road that we have been on the last 4 months has been very often times lonely. We have without a doubt had support and prayers ( a ton!!!). But, it is hard when people don’t understand what you are going through – even if they say that they do. Until you have a child with a rare condition/disease/syndrome you really have no idea what it is like.

It was during this time of loneliness that I began searching for answers and for help and for something, anything to make me feel better about what we were going through. I came across the Loeys-Dietz Syndrome (LDS) website. It gave lots of facts and lots of might happens. The best part of the website was the forum. This forum linked parents of children with LDS and individuals with LDS to each other. So, I took a step and just put it out there. I wrote a post on the forum. It said, “My son is 7 weeks and was just diagnosed. Anyone out there???” The first reply that I was received was by a mom in the UK whose daughter has LDS. She said that she was there if I needed her and if I had any questions I could ask her. Then she simply said, “welcome to your new family.” This was exactly what I needed to hear at the time. I needed to know that we were not the only ones out there going through this. I needed to hear that there were other people going through what we were going through and that we could go through it together. That we could be there for one another. God used this mom to help me see that we were not alone. This is when He turned my sadness into joy. We were not alone anymore.

You bring restoration
You bring restoration
You bring restoration
to my soul

You’ve taken my pain
called me by a new name
You’ve taken my shame
and in it’s place, You give me joy

You take mourning and turn it into dancing
You take weeping and turn it into laughing
You take mourning and turn it into dancing
You take my sadness and turn it into joy

hallelujah, hallelujah
You make all things new, all things new

Restoration by David Brymer

Changed For Good

“I’VE HEARD IT SAID
THAT PEOPLE COME INTO OUR LIVES FOR A REASON
BRINGING SOMETHING WE MUST LEARN
AND WE ARE LED
TO THOSE WHO HELP US MOST TO GROW
IF WE LET THEM
AND WE HELP THEM IN RETURN
WELL, I DON’T KNOW IF I BELIEVE THAT’S TRUE
BUT I KNOW I’M WHO I AM TODAY
BECAUSE I KNEW YOU…

LIKE A COMET PULLED FROM ORBIT
AS IT PASSES A SUN

LIKE A STREAM THAT MEETS A BOULDER
HALFWAY THROUGH THE WOOD
WHO CAN SAY IF I’VE BEEN CHANGED FOR THE BETTER?
BUT BECAUSE I KNEW YOU
I HAVE BEEN CHANGED FOR GOOD …”

The day after Thanksgiving I went to Wiked. When I heard this song and it reminded me of how my son Wyatt has affected my life. Without a doubt I have grown because of him and I like to think that he is being affected in a positive way because of me.

Many people have asked me to write down our journey with Wyatt thus far. So, here is goes. Beware – this is going to be a long post!

Friday August 5, 2011 – Wyatt was born via C-section. He was and still is super cute!! I fell in love the moment I saw him. He had red hair and blue eyes. The nurses kept saying, “he is sssoooo long!” and “he has such long fingers!” They noticed that Wyatt was tongue tied and that he had a small lower jaw. Once Wyatt and I were able to have some bonding time together they went ahead and did a frenectomy on him. He was having a hard time latching on to my breast because of this small lower jaw. After he lost over a pound (by Sunday) we decided to supplement with formula. So, every hour I would feed him formula, pump my breast, feed him the breast milk and then start all over. Needless to say it was pretty tiring.

Monday August 8, 2011 – We were about to be discharged from the hospital and the nurse wanted to get one more weight check on Wyatt. While she had him in the nursery she noticed that he had some labored breathing. She called for the pediatrician to check him out. They did a lung scan to eliminate pneumonia. They could not figure out why he was so labored. So, they decided to send him to Children’s to get checked out. The nurse, who I owe everything to, was so sorry. If is was not for Kathy Hemmel, our nurse, we would not have figured out what was going on with Wyatt. She cried with me and hurried to get me discharged so we could meet him at Children’s. The hardest part of the whole thing was seeing him strapped into the incubator and leaving the hospital without my baby with me. Once at Children’s we were taken to the NICU. It was so late in the evening that no one could give us answers. They wanted to wait until rounds in the morning. They didn’t have a place for us to stay since it was so late and because he was in stable condition. Once we got him settled we went home to sleep.

Tuesday August 9, 2011 – We were in the NICU at 8:00am. Once the doctors came around they decided that the best thing to do would be to do a sleep study to figure out why he was having labored breathing when he slept. Many different doctors came around to look at Wyatt. Neurologists came to look at him and noticed that he had a mild case of hyper-mobility and that he had very long fingers (Arachnodactyly). A plastic surgeon came around to look at his small lower jaw. They did an xray to see if he should have surgery to grow his lower jaw. At this point they decided not to do surgery but to just follow his growth.

Thursday August 11,2011 – Wyatt had his sleep study.

Friday August 12, 2011 – We were told that Wyatt had obstructive sleep apnea. He had 33 obstructive episodes in 1 hour. Most kids have between 0-5 episodes in an hour. So, they put Wyatt on 1/8 a liter of oxygen while he slept – which for a newborn is pretty much all day! His nurse, Carrie, also noticed that Wyatt was keeping his hands and fingers “in” towards him all the time. He never moved his hands or fingers around. So, they started OT on his hands. He started wearing wrist splints on and off during the day which later went to only at night. Genetics asked Joe and I so many questions and could not come up with anything that would make them think that there was anything genetically wrong with Wyatt. So, they signed off on him.

Saturday August 13, 2011 – We went home from the NICU with Wyatt!! I was so scared to take him home but so happy to finally start having a life again at home with our whole family.

Monday August 22, 2011 – I was getting Wyatt ready for bed. I put his wrist splints on, oxygen on and then I hooked him up to his pulse oximeter. Wyatt was asleep at this point. His heart rate was registering at 248 beats a minute. I thought maybe the signal on the pulse oximeter was bad so I turned it off and then turned it back on. It was registering the same. I called Joe into the bedroom. He felt his chest and his heart was racing. We grabbed Wyatt, still hooked to the oximeter,  and Ayden, who was fast asleep, and drove like we were in NASCAR to Children’s Liberty campus. I thought Wyatt was going to die. His heart was racing and he would not wake up. We finally got to Children’s and I ran in with him in my arms. I told the lady at the front desk that something was wrong with my baby. She said she was going to have to register me. I screamed that something was wrong with my baby, I was shaking the oximeter at her and she called for a nurse. The security officer called for back up. A nurse rushed out and had me follow her with Wyatt in my arms. She asked me all kinds of questions like: why is he on an oximeter, why isn’t he on his oxygen, why is he on oxygen in the first place, what was his medical history etc…. She rushed us into this huge room is was all white and she told me to lay him on the table and get him undressed. It was about that time that 15 other people (all doctors and nurses) rushed into the room and started working on Wyatt. Joe ended up taking Ayden over to my mom’s house. One of the doctor’s that came in was a woman from our church, I was so happy to see someone familiar and who was praying with me. They figured out that Wyatt was having a neonatal atrial flutter. The bottom part of his heart was going about 248 beats a minute and the top of his heart was going about 480 beats a minute. Pretty scary stuff! While at Liberty they tried to shock his system so that his heart rate would go back to normal. They held ice packs on his face two different times – it didn’t work. They used medication to try to get his heart back into electrical rhythm. They used a single dose, double dose and triple dose. Nothing would work. So, they called Children’s in Clifton and asked what they should do next. The Cardiologist on call wanted them to transport him down there. So, they took him down and literally got there in 15 minutes. Joe and I traveled behind them – it took up about 25 minutes. Once we got there we went to the Cardiac Intensive Care Unit and waited until they let us back to see him. Once they let us back we met the Cardiologist on call as well as a few of the fellows. He sat and talked with us for a few minutes and explained that they had already redone everything that they did at Liberty and that they were going to have to “shock” his heart back into rhythm – meaning they were going to defib him. It was the only way that his heart could possibly be out back into normal rhythm. So, they gave him a shot of something that would numb him and then they did it. Thank God it worked the first time because I don’t think I could have watched them do it again. His little body jerked and he let out a small whimper. It was the most pitiful thing I have ever seen. Once his heart rate went back to normal one of the fellows performed an echocardiogram on Wyatt. By the time this was going on it was about 3am. The Dr. assured us that she wasn’t going to find anything and that we should go home and get some rest.

Tuesday August 23, 2011 – We returned around 9am to the CICU so that we could be there when the doctors did their rounds. Dr. Goldenberg, a cardiac geneticists, came in to talk to us. She said that they were going to do genetic testing on Wyatt because of what they found on his echo cardiogram the night before. We were confused since the doctor said she didn’t think she was going to find anything. Dr. Goldenberg thought that we already had been told about the results – we had not been. She explained that Wyatt had a dilated Aortic root. This was a red flag for a genetic disorder along with his other characteristics (long fingers, small jaw, obstructive sleep apnea etc…). She explained that her first thoughts were that he had either Marfan syndrome or Loeys Dietz syndrome. They took blood to do the tests. Joe and I were in shock the rest of the day. I just sat in the room and cried on and off. I just could not believe that our son had all of this going on. I really cannot explain all of my thoughts. Joe didn’t think he actually had it – he kept thinking that the tests were going to come back negative. This is the day that they also started Wyatt on a beta blocker (propranolol) to slow the widening of his aortic root and also slow the blood flow through the aortic root.

Wednesday August 24, 2011 – We took Wyatt home and started the long waiting game to hear from the genetics team.

About six weeks later we got the news. The news was that Wyatt indeed had Loeys Dietz Syndrome. I was in some ways relieved that we finally had a name for all the “stuff” going on with him and that we had a baseline to draw from. In other ways I was devastated. As a mom you want to be able to “fix” things and there is no way that I will ever be able to “fix” what is going on with him. He will always have to deal with these issues. So, at this point the cardio genetics team decided that they wanted Joe and I to have genetic testing done as well as our other son, Ayden. Our test results came back normal. So, this means that Wyatt is a de novo (first one in a family) mutation, a simple misspelling in his DNA. This is a 1 in 10,000s chance of happening. To top it off the exon that is mutated in Wyatt has never been seen mutated before! So, he is literally 1 in a million. All the genetic counselor could say is that we have a VERY special son. We already knew this though – we didn’t need a team of geneticists to tell us this!!

So, we went on with life with a new normal. Lots of follow-up doctor’s appointments.

In November we had a follow-up sleep study. Wyatt improved tremendously! He went from 33 obstructive episodes in an hour to 2.7!! His pulmonologist felt that he still needed to be on oxygen though.

His OT is coming along really well too! He only has 2 more weeks left with his wrist splints. We are sure that he will need OT again at some point especially when he starts writing, just to strengthen his hands. But, for now we will be done!

In the middle of November we had a normal Neurologist appointment and Dr. Thomas suggested that Wyatt have an MRI to make sure he doesn’t have any other dilated vessels. So, on the day before Thanksgiving Wyatt had an MRI of his head, brain, neck, heart and chest. They had to put him to sleep for the MRI. The MRI went well and we left the hospital. We got out of the parking garage and my phone rang – I looked down and it was 513-636-0000. I really did not want to see that number. I answered and it was Dr. Thomas. I gave the phone to Joe as I was trying to attend to Wyatt. Dr. Thomas told Joe that Wyatt had some tortuous (twisted and spiral) vessels in his brain and heart. He also had a cervical spine malformation. His C-1 vertebrae was crimping his spinal cord. He said that he contacted neurosurgery and that they would be getting with us. We were in shock once again.

Monday November 28, 2011 – We get contacted to bring Wyatt into the ER at the Liberty campus to get fitted for his collar that he would wear till surgery. SURGERY??? Yeah, we were not really ready for that.

Wednesday November 30, 2011 – We were in the neurosurgeon office and he was checking Wyatt out. He showed us the MRI – we could plainly see the crimping of his spine. The neurosurgeon could not believe Wyatt was moving around like he was.

Monday December 5, 2011 – Wyatt had neurosurgery. They drilled off 1-2 cm from the base of his skull and the posterior part of his c-1 vertebrae. As soon as they did the decompression his spinal cord went right back to where it should normally be and his spinal waves got bigger! PRAISE GOD!!!

Wednesday December 7, 2011 – Wyatt was discharged from the hospital!!

Wyatt has been doing great since his surgery! We have been very pleased with the results. We will be doing another sleep study in February as the doctor seems to think that the surgery should have a positive result on his breathing.

I will keep the blog updated as more comes in. Thank you for keeping Wyatt and our family in your prayers – it has meant so much! Joe and I attribute the success we have seen in Wyatt to the power of prayer!

If you are interested, you can check out more about Wyatt’s syndrome at www.loeysdietz.org