The Road Less Traveled

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It’s Been A While…We Need Your Help

It has been so long since I have posted on the blog. Sorry about that. Completely not my intention but life just seems to get in the way. There are two reasons for my blog post today: 1. to update you all on Wyatt, 2. for a HUGE request.

1. Update of Wyatt: He is doing great! Back in December, he had his tonsils and superior adenoids taken out as well as new ear tubes put in. After about a week and a half he was back to his normal self. While they were in there, the doctor found our that he has a laryngeal cleft. In laymen term (which is what I understand), there is a hole between his food tube and his air tube and it causes him to aspirate on food and drink. So, on April 19th he will have it repaired. It calls for an overnight stay Рnot fun! But, we are praying that all goes well and we can leave ASAP.

2. HUGE request: It is that time again, we are taking a trip to Baltimore, MD for the Loeys-Dietz Syndome conference. In September, Wyatt was seen at Johns Hopkins for some gastro-intential issues. On that trip, because it was last minute, we decided to drive. It was terribly hard driving that far with both boys – especially without Joe to keep them in lineūüėČ

So, here is the HUGE request. Please prayerfully consider helping us get to Baltimore via the air this summer. I will be traveling with both boys and my mother. With the cost of the conference – it costs each of us a good amount, including the kids as they provide childcare for them and the hotel stay and car rental the trip gets pretty pricey. There are a few ways you can help. We typically fly Delta – you can always donate any sky miles you are not going to use. If you would like to give check or cash – I will accept that as well. I know this a bold request and normally I would never do this but I have prayed long and hard about it and I know that God would be pleased with me asking – as I am following His direction.

Raising a child with special needs gets to be pretty expensive. All of his medical bills, monthly prescription costs and just the fact that kids are expensive! So, I humbly come to you and ask that if you can help in any way, please do!

Thank you from the bottom of my heart!

Much love to you,


Wyatt Blig slice

Loeys Dietz Foundation Conference

At the end of June my mom and I took Wyatt to Baltimore to our first LDS conference. We also had plans on taking him to John Hopkins to be seen by Dr. Dietz himself. Our trip could not have gone better! From the flights to the exam to the conference it was wonderful!

Wyatt fast asleep on his first plane ride

Our first morning in Baltimore took us to John Hopkins. I didn’t know what to expect. I thought that Cincinnati Children’s was big. John Hopkins makes Cincinnati look so small! The appointment was just what I needed. It was so wonderful to finally have a doctor come in and tell me about LDS and my son instead of what has become normal, me tell the doctor about LDS. We were able to get more understanding of LDS and new findings. Dr. Dietz and Dr. Lindsay, his mentee (not even sure if that is a real word or not!) were enthralled with Wyatt. It was so emotional. As a mom you just want to know that your baby is going to be ok. When his doctors don’t even completely understand what he has it is not 100% reassuring. The fact that Dr. Dietz and Dr. Lindsay could tell me that he was going to be ok and that we were on the right track really put me at ease.

Wyatt being held by Dr. Dietz. Dr. Lindsay is next to them.

During the appointment we also decided that Wyatt would start a new medicine called Losartan. This medicine is an angiotensin II receptor antagonists. It works by blocking the action of certain natural substances that tighten the blood vessels, allowing the blood to flow more smoothly and the heart to pump more efficiently. The hope, and our prayer, is that this medicine will actually stop and reverse the widening of his aortic root. Dr. Dietz seems very optimistic. He also wanted us to make appointments with urology (for a hernia that Wyatt has) as well as the plastic surgeon because of the shape of Wyatt’s head (will explain laterūüôā )

The conference is something that I can hardly describe. It was so wild! The moment I saw Quentin on Thursday night I knew that he had LDS. I could not believe that there was someone who looked like my baby. I literally could not stop looking at him – almost in awe! I can not even explain it. I was just so happy to see someone like my kid.

Most of the kids at the LDS conference.

When we registered at the conference we were immediately welcomed like family. Hugs and smiles all around. I was finally able to connect in person with people I only knew via facebook. The first night of the conference was just a get to know you time. We heard some amazing stories from parents of kids with LDS and adults who have LDS.

The next day we had breakout sessions. These sessions were so informative. I loved hearing about things to keep an eye on, things to expect, things Wyatt needs to stay away from etc… The information was great but it was the stories and the people who I could not get enough of. The fact that I do not know anyone here in the Cincinnati area with LDS is hard. It is so great to have other people who know what you are going through, people who actually “get it”.

Wyatt and his BFF, Connor, hanging by the pool!

Heading back to Cincinnati was bittersweet. I hated to leave our new family but I was excited to get back and start working on the “homework” we received from Dr. Dietz. I was also excited to tell our team of doctors here in Cincinnati about our trip and the fact that Dr. Dietz had indeed confirmed Wyatt’s diagnosis of LDS and not Marfans.

Overall the conference was everything I expected and more. It was great for Wyatt to be seen and get introduced to his new LDS family. But, I think the biggest effect was on me. It may sound selfish but for the last year we have felt literally alone here in Cincinnati. Not that we don’t have a huge support system, because we do! But, no one can really understand what we have been through other than other LDS families. The fact that we now know many of them and have their support has made a huge difference!

ITP – The May Family Interview

As I have said before in one of my previous posts, this blog was originally birthed to become an online support community for parents who have kids with rare conditions. One way in which I planned for this to happen was to interview parents who have kids with these rare conditions in order for them to get their story out there so that other people in similar situations can feel like they are not alone, so they can reach out for support and so that they can possibly contact these families and create relationships with them. So, here it goes.

Let me introduce you to the May family.

KM:  Please introduce yourself and tell us about your daughter, Louise.

We are the May family, parents Ryan & Tina and children, Lorraine (7yrs), Keith (5yrs) and Louise (2yrs). ¬† Louise was born on October 23, 2009. ¬†She had a healthy birth and a very normal start to her life. ¬†I (Tina) had been a stay-at-home mom for 6 years¬† when Louise was about 5 months old I returned to the workforce.¬†Fortunately for our family, Ryan’s mom decided to be primary caretaker during the hours I was at work. ¬†It was the end of March and work was off to a great start and the children were adjusting to life without mom at home 24-7.¬† ¬†About 1 – 2 weeks prior to Louise‚Äôs 6 month wellness check, we (Tina, Ryan & Ryan‚Äôs mom) noticed a rather large unexplainable bruise on Louise’s left shin. ¬†It was about the size of a quarter and a real goose-egg. ¬†It was very dark (almost black) and we couldn’t figure out where she got it. ¬†It didn’t appear to bother her and we figured one of our other two angels did something and didn’t admit it to us. ¬†But within a few days of the appointment we noticed more and more strange bruising all over her body. ¬†These were not huge like the one on her leg, but they were the funny dark purple and very strange.
So the day of the appointment arrived and I immediately discussed this strange bruising with the doctor. ¬†She was concerned and started to disrobe Louise to check her entire body. ¬†Upon removal of the diaper, we saw a new symptom, a reddish pin prick looking rash on her legs where the diaper elastic made contact with the skin. ¬†She informed me that this was called petechiae. ¬†This rash was not in itself harmful and could possibly be related to the hot weather we were having, but along with the other bruising, she wanted to have some further blood work done. ¬†So we completed the exam as normal and then I walked next door to the Children’s Hospital Outpatient/Lab center (it’s in the same complex, how convenient!) and had her blood drawn. ¬†I was told I would receive some results later that day as well as in the days and weeks to come.
On the drive home, I received a call on my cell phone (mind you, I only live 20 minutes from the doctor’s office). ¬†The nurse on the other end asked me where I was and where I was headed. ¬†I told her that I was on my way home and asked what was wrong. ¬†She told me that Louise had “a critically low platelet count” and that I needed to take her directly to Children’s Hospital downtown and that they would be waiting for me. ¬†She asked if I was able to go directly there and I did. ¬†After what was one of the longest days of our lives, we learned that Louise had a condition called ITP. ¬†Unfortunately this is a diagnosis by default. ¬†When all other possibilities can be ruled out, ITP is the diagnosis for her particular symptoms. ¬†Louise had a platelet count of 2,000.

KM: What is ITP?

ITP stands for Idiopathic Thrombocytopenia Purpura.  ITP is a somewhat rare condition that typically affects only children ages 2 Р10.  Children usually grow out of it within 6months of onset of symptoms and very rarely (less than a few percent) do people have this for a lifetime.  Adults can also develop this condition (although extremely rare), however it usually chronic and lifelong for them.
ITP is when the body creates antibodies for the platelets in the blood. ¬†These antibodies mark the platelets and they are destroyed either by white blood cells or in the spleen. ¬†This is an autoimmune disorder. ¬†There is no known cause for ITP although recent research links this to viral diseases and may be a result of a viral infection. ¬†The reason most children grow out of it is the same reason you have to have booster shots for past immunization. ¬†Your body produces cells that make the antibodies. ¬†An immunization in effect programs these cells to make a certain type of antibody for the infection you are trying to prevent. ¬†Eventually these antibody making cells die off and you become less immune to that particular type of infection. ¬†The same thing happens in the case of ITP except your body is making antibodies for the wrong thing. ¬†Instead of fighting infection, it’s fighting the platelets.
Platelets are the cells in the bloodstream that clot. ¬†So when you get a bruise, platelets are what stop the internal bleeding. ¬†They are also what becomes the scab when you are cut. ¬†The job is to stop the blood from flowing where it doesn’t belong. ¬†Platelets also serve another very important function; they line the walls of blood vessels to keep the blood from leaking out of the vessels. ¬†Your blood vessels are like tubes with shutters. ¬†When you have an infection in your finger, your body will inflame which basically means the shutters of your blood vessels will open around the site of infection to allow the white blood cells (the killer cells) to pass through to attack and destroy the infection. ¬†Because your vessels are like shutters, they would easily leak blood if they didn’t have the platelets to coat them on a regular basis.

KM: You mentioned that Louise had a platelet count of 2,000. What is the normal range and what happens when you are low?

The normal platelet range for people is 150,000 Р400,000 platelets/micro liter.  This is what doctors can test for in a CBC or complete blood count.  This is a gauge of how much free-flowing platelets there are in the blood as there are quite a bit more lining the walls of the vessels.  When the count of platelets goes below 100,000, you are at an increased risk for bleeding but generally safe.  Counts below 50,000 are at high risk and require activities where you could receive a head injury to be restricted.  Counts below 20,000 typically require medical intervention and heavy activity restriction.  Counts below 10,000 require hospitalization and treatment until the count returns above 20 Р30,000.  The reason is at 10,000 or less, you are at very high risk of spontaneous bleeding anywhere in the body including the brain.  Even the slightest injury could be very dangerous.

KM: You mentioned to me that her condition has gone into remission, will you explain what that means and also how that will affect her moving forward?

I’m proud to say that it does appear that Louise’s condition has gone into remission. ¬†Only time will tell for sure, but her count has been maintaining above the low normal (150,000) count for the past several months. ¬†She also has not required any treatment since July 28, 2011. ¬†Remission in this case means that it is highly unlikely that she will revert into making these antibodies again since it most likely means that the cells producing these antibodies have died off. ¬†Please see above where I discussed how immunization works.
KM: Is there treatment for ITP?

The treatment that can be given to Louise is called IVIG. ¬†This is intravenous immune globulin. ¬†This is a drug that is derived from human blood and is given by IV for 6 hours in the hospital. ¬†It is an antibody for everything in the blood. ¬†This sounds counter intuitive, but it works like this. ¬†If your spleen can only destroy a certain amount of cells a day, then its better that it destroys all types of cells instead of being focused on one type. ¬†Your body continually produces new blood cells in your bone marrow so it’s ok for the body to destroy them. ¬†If the spleen now destroys all blood cell types, your body will come back into balance and you can make more blood in a day than the spleen can destroy. ¬†These treatments are very costly, around $3 – 5000 each time. ¬†Thankfully the Lord provided me with a good job that has great benefits. ¬†Louise has had 16 treatments (not including hospitalization, this is around $64,000 just for treatment). ¬†Luckily for us, insurance has covered all but $5000 (over two years) of this expense.

KM:  Is this a genetic disorder? If so, is she the first in your family to have it and does she have a chance of passing it?

To date, this is not considered a genetic disorder. ¬†However, there is not enough known on the mechanism that causes the condition to manifest. ¬†It is important to note that we have a large amount of autoimmune disorders in our family. ¬†Her father, Ryan, has Ankylosing Spondylitis (autoimmune condition that causes joint and eye degradation) along with other men in Ryan’s family. ¬†Her grandma has autoimmune disorders in her thyroid, Hashimoto’s and Grave’s diseases. ¬†Her great-grandma had Rheumatoid Arthritis. ¬†Her great-aunt had Type 1 (Juvenile) Diabetes. ¬†While none of these conditions are linked, it definitely is suspicious (even to the doctors) that she developed an autoimmune disorder. ¬†There is no evidence to date that she could pass this onto her children. ¬†However, her brother and sister are at a slight increased risk of developing ITP.

KM: How has Louise’s diagnosis affected your family?

It was very difficult in the beginning. ¬†I had started a new job (only been there for a month) and we were living week to week. ¬†We counted time passing by hoping the next CBC would yield better results. ¬†This went on for several months and then we finally started to adjust. ¬†I can definitely say that Ryan and I were tired all the time. ¬†Our two older children worried some and struggled to adjust, but just like anything else that is difficult for the family, we trust God, pray and hunker down to pass the storm together. ¬†Louise was generally unaffected. ¬†She didn’t know any different because she was so young. ¬†This was a blessing from that stand point. ¬†Also, this condition doesn’t cause any known pain. ¬†So from that perspective, you would never have known anything was wrong with her. ¬†She did tire a little more easily, but nothing a good nap couldn’t overcome. ¬†However, it’s hard to see your child be put through so much. ¬†It’s amazing how resilient children are. ¬†She even had a spinal tap once her condition was deemed chronic and she bounced back the same day. ¬†If only adults could learn to be a little more like children! ¬†Ryan and I have learned to lean more on God and not try to stand on our own. ¬†Not that I would want to go through this again, but our family is definitely stronger because of what the Lord was able to do through us as a family. ¬†In a way, it’s one of those strange blessings in disguise…even with all the nights of tears.

KM: Ryan, your husband, mentioned that he has a very rare autoimmune disorder ‚Äď will you tell us a little about that as well?

I mentioned it above, but Ryan has two related conditions, Ankylosing Spondylitis and Post Strep Reactive Arthritis. ¬†These are both autoimmune disorders that are genetically linked. ¬†The gene is HLA-B27. ¬†You can have the gene and not have these conditions, but you cannot have these conditions without the gene. ¬†Ryan has had seemingly unrelated symptoms for many years and I think it really dates back to his teenage years. ¬†However, his condition didn’t become full blown until he was around 30. ¬†He’s taken all types of drugs to control it, but has now decided that the remedy is worse than the malady so he’s gone off all forms of medical treatment. ¬†Please be aware, that he has a moderate version, not a severe version (although it might feel severe) of these conditions. ¬†The medications to treat are chemotherapy drugs.¬† There are many severe side effects and each patient will need to balance risk to perceived improvement. ¬†For Ryan, the risk was too high and he discontinued use of the drugs. ¬†For the most part, these conditions affect his joints all over the body. ¬†It comes and goes. ¬†He’s found that if he stays active, this is the best medicine, even when he has to push through the pain. ¬†It does affect his mood from time to time; nobody wants to be in what feels like endless pain. ¬†However, he’s also able to counteract that by trying to stay positive and working out. ¬†Physical exercise not only keeps his body in good shape, it also increases endorphins when elevate your mood naturally. ¬†He also tries to eat right and shies away from foods that can cause inflammation. ¬†He has found that reading other people’s blogs and chat rooms specifically for these conditions to be comforting. ¬†It’s nice not to feel isolated, like someone else understands exactly how you feel.

Surviving to Thriving: Successfully Including the Child with Special Needs

Over the past week I have had the pleasure of looking over the newest and hottest resource in special needs ministry, Surviving to Thriving: Successfully Including the Child with Special Needs. Amy Fenton Lee, the Special Needs Consultant to Orange and my personal friend, is a wealth of knowledge on this subject.  This 80 minute DVD can be used as a training tool for children’s ministry leaders and volunteers.

Each of the 13 short video segments addresses a common challenge that might take place in a children’s ministry classroom setting. The video offers strategies to help children with learning differences so that both the child and the leader will experience success in the classroom. There are also reproducible downloadable materials included on the disk.

What I love about the product:

– The DVD can be used either as one 80 minute training session or can be broken up into 13 different sessions. They had a leader with a hectic schedule in mind when they made this training tool!

– There are reproducible notes/handouts that help the viewer follow along with the DVD. (I am a very visual personJ)

– I love that there is a picture schedule provided of what a typical children‚Äôs ministry experience might look like ‚Äď this is great for those churches that do not have a picture schedule program like Mayer-Johson.

РWatching the DVD is just like being in one of Amy’s workshops at Orange! I felt like I was sitting in the room with her while she was teaching.

To order your own copy to Surviving to Thriving: Successfully Including the Child with Special Needs you can find it on The rethink Group website . Or to go directly to the product click here

You can read more about special needs ministry inclusion on Amy Fenton Lee’s blog

I am having another drawing!!!! ¬†Whoever comments on this blog post within the next week (by May 30th) will be entered into a drawing to win a DVD copy of Surviving to Thriving: Successfully Including the Child with Special Needs for their church. Totally FREE!!! Whether your church has a great special needs inclusion ministry or hasn‚Äôt even started, they need this training tool. So, hurry and comment ‚Äď you don‚Äôt want to miss out on this awesome product for your church!

Holding This Family Up

But Moses’ hands were heavy and grew weary. So [the other men] took a stone and put it under him and he sat on it. Then Aaron and Hur held up his hands, one on one side and one on the other side; so his hands were steady until the going down of the sun.

Exodus 17:12

I do not know this family personally but I have been touched by their strength. Their story is amazing. I know they are tired. So we, as believers, need to be an Aaron and a Hur to them. Please lift this family up in prayer. Please lift their precious daughter, Nora, up.  Please read their story.

Guest Blog Post on The Inclusive Church Blog

Feathers From Heaven – Book Review

Feathers from Heaven is a very powerful book. When I first started reading it I was not sure how I felt about it. By the end of the book I felt like I was a close friend of Denise Briley. As an author but more importantly, a mother, Denise takes readers into one of the most intimate moments of her life, the passing of her son. I literally felt like I was in the room with her when he passed away. My heart broke for her and I could feel, what I can only imagine, was a tiny glimpse of the pain that she felt.

The book was not just about the death of her son but it was a great story of how God uses us when we are not expecting it in ways that we never thought possible. It is the story of how her family’s move to a new town was hard in many ways, including the difficulty that came with finding a new church home. Her story then showed how God would use her and her son to start a ministry for kids with special needs. This ministry has now turned into one of the most successful special needs ministries around.

The thought I was left with after reading Feathers from Heaven was this: whatever God is calling you to do, do it. Do not be scared. He will not lead you down the wrong path. You may not think you have the ‚Äúgifting‚ÄĚ needed for the job/ministry/whatever it is that God is calling to do but God will show you that you have everything you need. He will stretch you; he will take you places you never dreamed. Just say ‚Äėyes‚Äô and follow him.

I love this poem that Denise wrote and shared at the end of the book. I hope you are


Feather from Heaven

God my God has refreshed me with grace

God my God has restored a true smile to my face

When I felt the sun would no longer shine

God my God made me realize he is mine

Though tempted to quit the running of my race

God my God placed his feathers on my face

In the sin of life and the journey of grief

It was He all along who would bring my relief

So now, I live free to be his daughter of grace

Knowing it was truly Him, my Lord, who placed his feathers on my face.

Different Dream Parenting: A Practical Guide for Raising a Child with Special Needs – Book Review

This is my first book review for The Road Less Traveled blog. Kind of exciting stuff! So, to kick it off right I will be giving away a copy of this book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs to one deserving parent. If you, or someone you know, would benefit from this book please send me your/ their name. I will be drawing for the winner of the book on April 2nd. All names must be emailed to me by April 1st. Please send the names to my email at

I had the pleasure of meeting with and getting to know author, Jolene Philo, last June (when I was very pregnant with Wyatt) when we both spoke at the Children’s Ministry Expo in Lexington, KY. Jolene is the author of two books, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children and Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs, the latter of which I will be reviewing today. Jolene is not only an author but also a parent of a child with special needs. She uses her expertise and personal experiences to help parents as they are learning to become their child’s biggest supporter.

‚ÄúRaising a child with special needs isn‚Äôt a bad dream. It‚Äôs just a different dream. And surprisingly, a different dream can be the best dream of all.‚ÄĚ This was not only my favorite quote from the whole book but it pretty much sums up the book itself. In the beginning of ones journey as a parent with a child who has special needs one goes through many emotions, just as one would with a typical child. The only difference is, when one realizes their child has special needs each parent goes through the stages of grief. People experience these stages at different times and some get through it quicker than others. In the beginning of our journey with Wyatt I would have moments of grief. These moments would be intense and often times overwhelming. I would have glimpses of anger for the fact that Wyatt may not be able to do things that most kids will be able to do, sadness that he was going through all of this medical junk ‚Äď more in his first 3 weeks than most people experience in their entire life, and moments of EXTREME anxiety ‚Äď I will have a blog post on this later! My husband went through his own grief. For him, it was mostly denial. He wanted to be the positive one out of the two of us. I was more of the realist.

I believe that Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is one of the best books written for parents of kids with special needs. It is a wonderful book especially for those parents who are just beginning their journey. For those parents who know before their child is born that they have some sort of difference this would be THE book to read. It explains everything from how to become the advocate that your child needs to tips for hospital life ‚Äď both for your child but also for mom and dad. Jolene also writes about the effects that raising a special needs child can have on the whole family and other areas of life. She writes about long term care and how to deal with the death of a child.

I love that Jolene included explanations for items like waivers, financial aid and organizations that can help your child and the rest of your family. There are so many different things out there for parents of kids with special needs and MOST of it is confusing. For us, we didn’t really understand some it (and by some of it I mean ALL of it!) and I thought that if I was signing up for something it meant that I was asking for respite care and nursing care for my baby. Not to say anything is wrong with that but for us and where we are right now it is not something that we need. I had to have about 4 different people explain to me that signing this certain waiver did not mean respite and nursing care it meant we could get help with specific items for Wyatt’s physical therapy and that this money could also pay for his glasses. If I didn’t have people explaining all of this in great detail I would not have understood. Jolene does a wonderful job of explaining. She also is honest in saying that she does not have all the answers and gives websites to places that might be able to help more.

Hands down the best part of the book is that it is all Biblically based! The end of each chapter includes a prayer to God, questions to ask yourself and resources to help you ‚Äď depending on the section. I love how real Jolene is in the book. You and I know that it is easy to mad at God at some point along this journey, add a child with special needs to the mix and it is inevitable. Jolene realizes this and throughout the book calls it out. She teaches you how to talk with God about your feelings and what you are going through. In Chapter 16 Jolene writes about guilt and how Satan will use ‚Äúguilt to rob parents of the energy and confidence required for special needs caregiving.‚ÄĚ She reminds us that we need to ask God to reveal the truth to us. As a parent is it so easy to believe the lies that Satan throws at us. This is why we must stand firmly grounded in God and His promises. She reassures her readers that God knows their pain and that there is nothing that they cannot go to him for.

At the end of Different Dream Parenting Jolene offers many great prayer guides for parents to use when praying for their child, for themselves, the entire family, and for others who have an impact on their child. I love, love, LOVE the fact that she decided to put these in the book. They are wonderful tools that parents can use and reuse each month.

In one part of the book Jolene writes about how important it is to pray through the scriptures to find encouragement. She uses the book of Psalms to show how she would pray for her son. She encourages the reader to either use Psalm 139:13-17 or pick their own passage to help them. This is what that prayer looks like:

Oh yes, you shaped me first inside, then out; you formed me in my mother‚Äôs womb. I thank you, High God ‚Äď you‚Äôre breathtaking! Body and soul, I am marvelously made! I worship in adoration ‚Äď what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Life an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you. The days of my life are prepared before I‚Äôd even lived one day. Your thoughts ‚Äď how rare, how beautiful God. I‚Äôll never comprehend them!

Oh yes, you shaped Wyatt first inside, then out; you formed me in my womb. I thank you, High God ‚Äď you‚Äôre breathtaking! Body and soul, my son is marvelously made! I worship in adoration ‚Äď what a creation! You know him inside and out, you know every bone in his body; You know exactly how he was made, even his Loeys-Dietz Syndrome, bit by bit, how he was sculpted from nothing into something. Life an open book, you watched him grow from conception to birth; all the stages of his life were spread out before you. The days of his life ‚Äď all his surgeries and procedures and treatments ‚Äď all prepared before he‚Äôd even lived one day. Your thoughts ‚Äď how rare, how beautiful God. I‚Äôll never comprehend them! But I will trust them and your purposes for my life and for my son‚Äôs.

For more information on Jolene Philo and her ministry or to order one of her books please visit her website,

Once Every Four Years

Just wanted to spread the word: February 29th is not only Leap Day but it is National Rare Disease Day. It is a day to raise awareness for these rare conditions that are actually all around us. This video was very well done and straight to the point!

And The Blind Shall See

The title of this post seriously gives me goosebumps. As some of you know we have struggled with Wyatt’s eyesight since he was born. Early one we realized that he was not tracking like he should. So, we took him to an Ophthalmologist at Children’s hospital. Long story short we were not happy with the diagnosis that the doctor gave Wyatt or the service we received from him. So, we took him to another Ophthalmologist in the area who came highly recommended from a few of our friends. I actually had three different people tell me to take him to Dr. Miles Burke within 10 minutes. None of them knew that the other had recommended him. I take that as a God thing!

Dr. Burke recommended that Wyatt get glasses as he is VERY farsighted. This would explain why he was not tracking at all times – he is honestly blind as a bat when it comes to things up close. Everything is blurry. He also decided that Wyatt needs to have surgery on his eye muscles when he is 9 months old to strengthen them.

Last Friday, Wyatt finally got his glasses. When they put his glasses on it was like someone turned the lights on in a dark, dark world. Wyatt looked right into my eyes (which hardly ever happens) and smiled the biggest smile. My heart melted all over again just as it had when I first saw him. He was finally seeing me, I was no longer a blurry blog. He then started looking around and checking out his world. A world that he had never really been able to see. I am so overwhelmed, it brought me to tears to think that my baby was finally able to see. Praise God!

Wyatt looks pretty darn cute in his glasses, if I do say so myself! He is doing pretty well with them. He is like any baby who likes to rub his eyes. So, pulls them down quite often. We keep them on his as much as possible. Our hope is that he will get the jest of it soon and want to keep them on as he can actually see things when he has them on. I can’t say enough how happy we are that we have had early intervention and been able to help our little guy early on.

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