Facing the storm…sunshine above the clouds

Posted on May 15, 2012 by

The disciples fought the storm for nine cold, skin drenching hours. And about 4:00 a.m. the unspeakable happened. They spotted someone coming on the water. “‘A ghost!’ they said, crying out in terror” (v.26 MSG). They didn’t expect Jesus to come to them this way. Neither do we. We expect him to come in the form of peaceful hymns or Easter Sundays or quiet retreats. We expect to find Jesus in morning devotionals, church suppers, and meditation. We never expect to see him in a bear market, pink slip, lawsuit, foreclosure, or war. We never expect to see him in a storm. But it is in storms that he does his finest work, for it is in storms that he has our keenest attention. Fearless: Imagine Your Life Without Fear Max Lucado

The storm…If you can picture the weather people who are laden down in all-weather gear, waves crashing in the background – barely able to stand with the whipping wind making the traffic signs wave back and forth to each other…yeah, that is kind of where we find ourselves this past week. It has been scary and wonderful all at the same time. It isn’t unlike marveling at the wonder of nature as a thunderstorm rolls in, wreaks it havoc, moves on and leaves a beautiful sunset behind. We have had days end with a beautiful sunset as well as days end with thunder still in the distance…hoping, praying the phone doesn’t ring with the delivery of bad news, another flash of lightning.

As Peter took that step of faith, one that Jesus asked him to do, he was fine…as long as his gaze was upon Jesus. We have found ourselves there too. One of the hardest things, among many this week, is to have to pull Theresa away and to take her home at night, torn between comforting, swaddling and just being there for every cry – and tending to the needs of a 2 year old who just wants to know “baby Isaac be okay?”, Matthew who just wants to stay home and to tend to her own healing of having surgery too. It is times like this when your gaze comes off the outstretched arm of a waiting Lord…and you begin to sink, become weak in your faith and in the bigger work that God is doing. You begin to think about nurses and will they check on our baby enough, will they comfort they way we do, will we miss a doctor’s update, a change in care. We have to drive Westward and trust. Trust that the Son is above the clouds of this current storm.

His call to courage is not a call to naiveté or ignorance. We aren’t oblivious to the overwhelming challenges that life brings. We’re to counterbalance them with long looks at God’s accomplishments. “We must pay much closer attention to what we have heard, so that we do not drift away from it” (Heb. 2:1 NASB). Do whatever it takes to keep your gaze on Jesus. Fearless: Imagine Your Life Without Fear Max Lucado

A call to courage…a call to keep our eyes upon the Healer as he heals through the healers and caregivers here at Devos Children’s Hospital. Keep our eyes on what God has already done in Isaac’s short life. Keep our eyes on all of the miracles we can shout out in the work he has done in Matthew’s life and in the rest of our family.

Isaac wearing his cool sunshades

We have much to be thankful for and to pray for as well. Although we loved Isaac’s sun shades, we are thankful his bad levels in his liver have evened out. No more spotlight and sunshades. Today he had some tests to take a look at his esophagus repair and the report was great…NO leaks! This means we should be able to try some small amounts of feeding in the next few days. There are other things to consider such as a very restricted esophagus and a deep concern for reflux but good news is good news. Also, on the good news side of things, Isaac should be able to have his chest tube removed tonight. A chest tube probably has to be the most uncomfortable things to have in all of a hospital experience.

For the prayer and our next hurdles…Isaac has a real problem with keeping an airway open. The only position he has been able to tolerate is the prone position…flat on his tummy, slightly inclined. Any other position makes him gasp for air and fill his little mouth with saliva. There are many theories and we will begin to do the process of elimination over the next few days. Theories include a weak swallow or a too-much restricted esophagus in that he cannot clear secretions, thus blocking air. Another theory is a “floppy” trachea…not able to hold the shape well enough. Yet another theory is the shape and form of his cleft which allows the tongue to flop back and obstruct the airway. There may be others but these are the most prominent ones on the table. It very well may mean that all of them are true. This is where the prayer and the trust come together.

You may share these prayer needs as you feel led by using the share buttons below. If you want updates you can subscribe to the blog by becoming part of Matthew’s and now Isaac’s prayer team. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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God lives very close to the floor…

Posted on May 11, 2012 by

“I told her that I still take medication, and every morning I take that little pill with a prayer of thanksgiving that God made a way for those of us who suffer like this on such a broken planet. And, I told her that in the darkest moment of my life, I discovered that God lives very close to the floor, very near to those who are broken.”  Sheila Walsh, God Loves Broken People

While hanging in the abyss of time in a hospital NICU watching Isaac heal I have had the time to finish a few books I have been in the middle of. The quote above is from God Loves Broken People: And Those Who Pretend They’re Not by Sheila Walsh. This book is a great read and has been perfect for the life we have right now…broken and hurting but trusting and having hope for an abundant life to come for Isaac. There are many, including us, who are living close to the floor in prayer, right where God meets us.

Sarah Anne getting some Isaac time before surgery

We sit with him, touch him when we can, we beg God to fix him, make him whole and healthy and strong enough to come home. We already love him more than any words can speak. I have to pry Theresa away from that isolette, his little cocoon that has been all the life he has ever seen in his short life, each night to get the needed rest she needs. Afterall, she has had major surgery too.

I am being broken in ways too. It has nothing to do with healing, pumps, hoses, ventilators or with this hospital at all. I am struggling with surrendering and allowing people so serve us. Guys just don’t handle that well. I am the one who serves people, our family is the one who hangs around long after an event and picks up the pieces, resets the platform when everyone else has gone home. We are the ones who serve, fix things, talk to other parents who are struggling with the news of a not-so-perfect child. We are the ones who are creating the “manual” on how to effectively clean poo from a ceiling fan. We ( mainly “I”) have a hard time being served…Okay, I said it. “My name is Kevin and I have a hard time being served.”

While we are attending to Isaac, there are hosts of people who are arranging care for Sarah Anne and Matthew, helping with fundraising to help send Hannah to Mozambique, Africa and Megan to Marvel, Arkansas on missions trips this summer, people who are planning and plotting to enter our home and finish my painting project and tackle the huge mommy-is-nesting list that I still had 6 weeks to complete, until last Sunday changed our lives and “our” plan. My family is in shock (I think I even heard a gasp) that I am going to allow someone else to paint in our living room.

Another quote from Shiela’s book…more words I needed to hear today:

What if the brokeness we ask god to fix is in fact a gift? What if the wounds we beg god to heal, the burdens we plead with him to remove, are the very things that make us fit for his service? Can our brokeness be a blessing?

I, and the rest of the Troupe’s can answer that question. We are living proof and can testify that brokeness can be a blessing. I am learning, actually just starting to learn how to let go and allow people to serve. I was told a few times this week that if do not allow people to serve us, I am denying them their blessing of using their gifts, talents and wealth. I would be a stumbling block and deny our church family the opportunity to be a family…families care for one another, meet each other’s needs.

Enough about me…here is the prayer list for Isaac as you enter your weekend: Praise for his ventilator being removed today, praise that the fluid in his chest is looking better on his x-rays. Pray for restful, healing sleep. Pray for his repairs to his esophagus to heal without leaks…the plan is to introduce some fluids in his newly created esophagus early next week, pending his progress over the weekend.

THANK YOU to all of you have been praying! There is no earthly way we could feel the peace that we do as we sit by Isaac’s side. There are literally people all over the world through your friends, our friends and the Facebook community of CHARGE Syndrome families who are praying this little guy out of this hospital.

You may share these prayer needs as you feel led by using the share buttons below. If you want updates you can subscribe to the blog by becoming part of Matthew’s and now Isaac’s prayer team. Don’t worry about providing your email address…I had enough SPAM growing up…l would never send any unnecessary SPAM your way!

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That I might show you my power…

Posted on May 9, 2012 by

This verse from Exodus continue to reign in our lives. I know I shared this verse just a few days ago, but we cannot hold back using it again as we have felt the tremendous love from all who read this blog…and share it.

But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth Exodus 9:16

All of Isaac's Mommies

We often hear from people that we must be very “special parents” to not only have one child with special needs, but now two. We hear words like gifted, special, patient, strong…blessed. To be honest, most of the time those words just roll off our backs…and we think, blessed? As Matthew is rubbing his own poo into the carpet or taking his clothes off in public to regulate his body temp. Just a few days before Isaac was born I was wallowing in all of this “blessing” as Matthew was doing his happy yodeling noises as his two older sisters were performing in a ballet recital. Several people turned around and gave a little smile, a nod saying that he was okay. But, there was one person who turned around over and over and gave me the “get him out of here” look. I moved to the back. The back is where we spend a lot of time enjoying the many activities our family is involved in. I determined in my mind that I did not move because Matthew was distracting…I moved because I was distracted by one person giving me the look.

We get a different perspective from the back. We also get a different perspective of seeing how God works and how he blesses people through the conduit He has made through Isaac, Matthew and the rest of the Troupe’s. We may deal with heartache, pain, stresses of surgeries, waiting…the constant waiting for healing. We watch as Isaac’s chest rises and falls with each breath but we also get to see how God works through the people He has put in our lives, in our family, our church family and through all the people around the world are praying for this little guy. We physically get to see the fingerprints of God in how prayer is answered, how needs are met and how lives are changed. I would agree, we truly are blessed. We are blessed by seeing others blessed by being able to use their gifts, their contributions, their wealth and most of all, seeing prayers answered. I feel like we are now blessed twice and will continue to see things from a different perspective.

Now, for the Isaac update…he is doing well after his surgery. The surgery was more difficult than expected. In true CHARGE fashion, the abnormal connections in his chest were not the normal abnormal. It took a while to figure out all of the plumbing before making the right cuts and stitches. We now pray for healing over the next several days as he remains on the ventilator so he doesn’t have to work at breathing. In a week or so they will try the new connection to his stomach and check for leaks. This repair, along with his cleft lip and palate will be our next hill to climb in the area eating. Pray for no reflux and for the one of the “C’s” in CHARGE, the cranial nerve issues that may be present…this nerve controls swallowing.

As far as the other CHARGE related issues…I will start with the 4 “C’s” of CHARGE. Colobomas - yes, Choanal Atresia – yes, Characteristic Ear – externally - yes, internally - won’t know until other tests, Cranial Nerve – won’t know for a week or so. There are other Cranial Nerve issues that do not seem to be present such as facial palsy…when he gets mad we can see his whole face scrunch up! Other issues related to CHARGE are the heart wich seems okay in the construction, but he has the normal premie problems that need to be resolved with things that need to close or open when a baby is born. His kidneys seem to be fine, but smaller than normal. He does meet some of the genital criteria but I will keep that private out of respect for Isaac! You can read more about the 4 “C’s” of CHARGE by going to the link at the top labeled “What’s in CHARGE in Matthew” – there are links to the CHARGE Syndrome Foundation website if you want to follow the links and are curious about the diagnostic criteria or are just curious in general about CHARGE Syndrome.

What to pray for: healing of the esophagus repair as they had to stretch things a bit to get them together. Pray for the next valley to cross as it comes after this little healing period. Pray for direction for the doctors of how to best handle this complicated little guy. Pray for Theresa as she is released from the hospital today…or as she put it, she is checking out of her bed and breakfast for the past few days. It has been fun watching her nurses chase her all around the hospital trying to find their patient. They bring her meds and food and all say the same thing: “didn’t you just have a baby? You are hard to find”. I know where to find her…right next to our new miracle, Isaac.

You may share these prayer needs as you feel led by using the share buttons below. If you want updates you can subscribe to the blog by becoming part of Matthew’s and now Isaac’s prayer team. Don’t worry about providing your email adress…I had enough SPAM growing up…l would never send any necessary SPAM your way!

 

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Isaac update…”bubble wrap” needed

Posted on May 7, 2012 by

Your prayer response has been nothing more than humbling. Your notes of encouragement and scripture have been what has kept both of us going through this whirlwind of the past few days.

The most immediate need of prayer is for Isaac and the surgery he will be having tomorrow (Tuesday) to repair his EA and TEF issues. What those stand for are Esophageal Atresia and Tracheal/Esophageal Fistula. In the language you and I use the first one means that his food pipe goes down, stops and has created a pocket. This means secretions and food have no where to go. The windpipe goes to his lungs…but also continues on to his stomach where the esophagus was supposed to go. The surgery will be to make all of the right connections. Please know that I have completely oversimplified this explanation…prayer is needed not only for the surgery but also for the recovery. Isaac will not be able to even try to eat until a week or so has passed. Combine this feeding difficulty with his cleft palate and lip, and any cranial nerve swallow problems, Isaac will have quite a learning curve just to eat.

Many of you have asked how we are doing. I had a thought on the way to the hospital this morning after seeing and reading many of the messages you have all left. Your constant prayer has had an insulating effect on us much like being wrapped in bubble wrap. We can feel the bumps of what is going on around us but are protected from the fear, worry and anxiety. Those things have been filled in with hope, comfort and peace.

Tomorrow we will need another “packing” of bubble wrap for the surgery and recovery.

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right-hand column.

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For such a time as this…welcome Isaac Gabriel Troupe

Posted on May 6, 2012 by

So, not your typical day. Life was going on as normal as life can be in our house, and all of a sudden…

Theresa and I are proud to announce the arrival of Isaac Gabriel to this world. Born this morning (May 6) at 8:37 a.m. and weighing in at 5lbs 3oz. Not what we expected today…almost a full 6 weeks earlier than “planned”. And I mean to emphasize planned. We just had this conversation on our way back from U of M on Thursday about how we can sometimes take on the roll of God and plan, plan, plan. By doing so we can nearly put God in a box. We prayed that His will would be done and all of the details would work out. He did just that. He chose the time, He chose the place.

One song that came to mind as we have been gearing up for this journey was one by Wayne Watson…For Such a Time as This. 

chorus: For such a time as this, I was place upon this Earth, To hear the voice of God and do His will, whatever it is. For such a time as this, for now and all the days He gives, I am here, I am here. And I am His, for such a time as this…

We have been preparing, praying and waiting for such a time as this. A great scripture to go along with this thought is found in Exodus:

But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth Exodus 9:16

Now, for the prayer to support and the chance for God to be lifted up: For Theresa, who wants to be with Isaac all the time…she needs to heal and for managed pain. For Isaac, who is doing really well considering he is 6 weeks early…for the surgery he will face in the next few days on his esophagus and trachea (to attach his stomach with the esophagus). For a noticeable heart murmur and no test results yet, for the other pieces of CHARGE that we have not been able to look at or identify yet. He does have a cleft lip and palate but only on one side. He does have the classic CHARGE ears like his brother! Most of all, that he will remain the cutest baby ever…the next 48 hours will be our next hill to climb.

I will update in a few days…but please pass this along. We are grateful that we are where we are, in Grand Rapids…God knew all along that we would be needing our “support team” here with family and our church family.

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right-hand column.

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His Name: Isaac Gabriel Troupe

Posted on April 22, 2012 by

You heard it here first folks! His name will be Isaac Gabriel Troupe…Our fifth child to be born (tentatively) on June 8, 2012. We liked Isaac because Isaac means “laughter” which is what many people did when we announced we wanted to have another child. And, Gabriel because Gabriel means “strength of the Lord” which we hope God grants to him and to us through him to begin and follow through on this journey.

A big thank you to all who have been diligently praying for all of us in the Troupe household. Also for sticking with this blog and prayer chain as we have taken a small break away to “stay the course” and gathered the much-needed information we need. Throw in the mix a change in duties at my workplace, Easter weeks and Matthew adding some of his own dictated home improvements…well, you can imagine how crazy things have been.

Now, for the information many of you have been asking for and to answer the question of “What is going on with Isaac?” Many of you have prayed for us to get the needed care for Isaac (and Theresa) “out of network” from our insurance provider. Our provider is great, but the specialized care needed for a CHARGE Syndrome birth, with the multiple complications that can arise, it was crucial for us to arrange for birth and after care at the University of Michigan, Mott’s Children’s Hospital. Your prayers and our’s were answered and granted after jumping through a few hoops and seeing a few more doctors. They all had the unanimous answer of U of M.

We have been encouraged and blessed by the team we have met with at Mott’s so far. We were already familiar with a few of the doctors, they are the same who have provided great care already for Matthew. They embraced our needs and one even called Theresa within a few minutes of receiving an email from her sharing our news of a possible CHARGE diagnosis. Our first appointments were this past week. We learned of some good news and some not good news when Isaac joins us in a few short weeks.

The good. The heart ECHO showed “no remarkable” findings…meaning that at this time there is nothing that we need to be immediately concerned about at birth. When things have settled down they will do another ECHO a few days after he is born. There is one anomaly they are keeping an eye on…the return of blood flow coming from his lower body is not going to the normal spot on the heart…blood is returning and being pumped back out but the path that it takes is not known at this time…kind of like Matthew’s heart…he has extra plumbing too.

The not-so-good. In several ultra-sounds we have been keeping an eye on Isaac’s stomach, or in this case, a lack of evidence of his stomach. Not seeing it does not mean that it is not there…but what it does mean is that there is the lack of amniotic fluid in it. The reasons for Isaac’s lack of fluid in his stomach is due to one or maybe two reasons. I will forgo the medical terminology and use the simple explanations…either his esophagus is not attached to the stomach and has created a pouch at the end, or the esophagus and the trachea have fused together and are sharing the same duties…or there could be a combination of all of these things. In any case, these things can be life threatening…either at birth or complications from the surgeries to correct. This alone opens up many opportunities to pray him through each step of the way.

What is unknown. We will not know some of the other pieces until he is born…the severity of the cleft lip and/or palate, eye colobomas, breathing obstructions/difficultly and his ears.

One way God continues to show his face through this journey is through something Matthew did during our long day at U of M. Matthew had joined us for the day when we added an appointment for him when we knew we were going to be there. During one of the ultra-sounds they printed a picture of Isaac on a copy paper sized sheet of paper so it was nice and large. I showed it to Matthew and signed “baby brother” to him several times. Although he seemed not to be interested, an hour or more later he was watching a Signing Times video with a family theme. When “brother” came up he grabbed my finger and pointed to the word bother on the screen and then pushed my hand in the bag where I placed the image. When I pulled the sheet of paper out, Matthew placed it on his lap and signed “baby brother” with a smile on his face and a giggle. Makes me misty eyed all over again as I write this.

Our prayer for the coming weeks is for peace in our hearts as we prepare for the birth day. There are so many logistical things to plan and prepare for. Pets, Megan leaving on a mission trip, care for Matthew and Sarah, Hannah preparing for a mission trip for late summer and some type of “normal” life for Hannah and Megan such as county fair season…all while we are almost certain of an extended stay in the hospital…across the state.

One celebration as I end this post…the picture posted above is of one huge milestone that happened just this weekend. Just a few months shy of his 11th birthday…Matthew peed on the potty for the first time. What a great picture of this accomplishment. This will be a long process but we are encouraged that he actually did it!

When we are weak and feel as though we are at the end of our rope…things like this great quote popped up on my facebook page by a friend we met while Matthew was having his heart surgery a year ago. It is from a message that was preached in their church a state away…God’s message from his word  has no boundaries.

God has bigger plans than our circumstances!

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right-hand column.

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Lush grass or cold rocky crags?

Posted on March 9, 2012 by

Lush grass, fertile soil, butterflies, meadow flowers, frangrant pines, soft ferns, a beautiful babbling brooke…The valley has all the makings of a perfect postcard picture. So, why do so many of us long for the mountain top experience?

I finished a great book recently by Andy Andrews titled The Noticer: Sometimes, all a person needs is a little perspective. A casual story about a man who mysteriously shows up in people’s lives at an opportune time and helps them with “a little perspective” of the situations they find themselves in. It was the perfect read for the journey we are on right now and how the journey is about to become a much larger expedition for our family.

As many of you know from our recent posts, we are expecting a new addition to our family…a son who is set to arrive at the end of May. If you are new to Lessons from Matthew you can catch up on the previous posts Can Lightning Strike Twice? and Lightening Update. We haven’t posted in a few weeks while we have been gathering information on what kind of expedition we may be facing with our new son.

Without going into all of the details, there is substantial enough information in the different ultra-sounds and fetal heart-echo to determine that our new son may join Matthew in the CHARGE Syndrome corner. The puzzle pieces I mentioned in past posts are coming together to form a familiar pattern and picture. Nothing is certain for sure, but we are beginning to assemble the “team” that will be present at his birth. We covet your prayer as we assemble this team and as we build the needed appointments to fact-find in the next several weeks. As early as next week we will be getting another look at our boy’s heart at Mott’s Children’s Hospital at the University of Michigan. Who would have ever known other than our creator that we would be back at the Neo Natal Heart Center there again.

CHARGE Syndrome or not, our new baby boy will enter this world with challenges similar to what we experienced with Matthew. What we will not know until that day is the extent and severity of the information we know now and what we will not know when he is born.

The main question many of you are begging to ask at this time…How are we doing? I can personally say, it is the most helpless feeling in the world to hear your best friend (my wife Theresa) cry herself to sleep at night. I have my moments too…but, as a guy I will take my time to release when I can wear my sunglasses, even while driving on a cloudy day. I think Theresa and I are not asking God the “why” question, but more the “how” question. How are we going to take on this new challenge? We know strength will come…but, it can be hard when you are in the infancy of processing bad news.

I mentioned Andy’s book earlier…here are some of the words he wrote:

“Everybody wants to be on the mountaintop, but if you’ll remember, mountaintops are rocky and cold. There is not growth on the top of a mountain. Sure, the view is great, but what’s a view for? A view just gives us a glimpse of our next destination-our next target. But to hit that target, we must come off the mountain, go through the valley, and begin to climb the next slope. It is in the valley that we slog through the lush grass and rich soil, learning and becoming what enables us to summit life’s next peak.” Andy Andrews – The Noticer: Sometimes, All a Person Needs is a Little Perspective

Right now we are trying on new hiking shoes, testing and sizing up a new walking stick, selecting gear and outfitting our packs…we have the next summit in view and getting ready for the expedition of our lives!

Would you continue to pray for us? We would be grateful if you would pass along our need as well.

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right-hand column.

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Lightning update…the short-term forecast

Posted on February 23, 2012 by

A quick update for all of you have been praying fervently for us over the last few days. We had the 3-D ultrasound today and it did confirm that our little boy does in fact have a cleft lip and possible palate. It appears to be unilateral (one-sided).

As far as the ears are concerned…we will have to wait until we send the results to out geneticist friends and allow their expert eyes to take a look.

We were able to get some good looks in between his hands AND feet blocking his face!

We have to be honest here and say that our drive home was a little somber. It usually takes a few days to process this kind of news…we know, at least in the short-term, we will be looking at some surgeries to repair the cleft…as far as the rest of the puzzle pieces, we will have to wait and see until he graces us with his presence in late May.

As a family, we covet your past and your continued prayer for us as the pieces are put together and we see a clearer picture.

Please share this news as you feel led…Kevin, Theresa, Hannah, Megan, Matthew and Sarah Anne…and baby boy!

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Reach for the stars…

Posted on February 21, 2012 by

It has been a week of praying, reflecting and preparing for what is to come…not unlike this season we will embark on in the coming weeks that many call lent. I will get to an update on where we are at with our son-in-the-making after a brief story of what Matthew was up to this past week.

When I put Matthew to bed on Sunday night I noticed a plastic star in his mouth. It wasn’t the usual puzzle piece but I didn’t think it was too out of the ordinary at the time. During my drive to work the next morning I had a realization thought that made my heart skip a beat. I immediately called Theresa and asked her to remove the half shelving unit from his room…a shelving unit he is fond of moving around to different locations in his bedroom. Matthew has several little stars placed on the ceiling around the light fixture which will glow in the dark when the light is turned off. None of them were missing when we snapped the picture shown here on Sunday. He had pulled one of our stools from the kitchen island into his room, placed it on top the shelving unit and proceeded to try to climb up his therapy swing. The thought was…remove the stool, remove the danger. My apologies for the bad photo quality…it was not my highest priority at the time…not bad though for a stop-and-go, grab the son manuever, huh?

Apparently, the stool was optional and not needed. The only way he could have reached the top was to place his feet in the hand-holds of the swing, as you see he is trying to do in the picture, and proceed to climb up…and people wonder why we are always saying Matthew needs to be watched 24/7…it is for his own safety.

As a family, I would have to say that we have been more than amazed at the outpouring of support we have received from all of you who read and shared our story over the past few weeks through this blog. As you have shared on Facebook and Twitter our prayer request for this new little boy, God had been lifted up and we are more at peace with whatever will happen over the next few months as we await his arrival. As a family, we had the chance to have Theresa anointed with oil by our church family and prayed over…it was powerful and a blessing of peace. Please continue to pass along this blog to friends and family…we are honored to show others the power of prayer and suffering through our families stories and experiences.

This week we will be having a 3-D ultrasound to take a look at the baby’s ears…this will be a further clue to the CHARGE Syndrome puzzle. People with CHARGE Syndrome have a characteristic ear (read more at this link) that is unique to CHARGE Syndrome. Please pray for a clear picture of one or both ears. We also hope to see a clear picture of his face and the possible cleft lip.

We have had good days and bad days over the past few weeks. A movie scene that keeps playing over and over in my head is from the movie Facing the Giants. Coach Grant Taylor, after giving up on trying to “make” his players want to play better and to want to win…challenged them in a different way. He challenged them all to get right with God:

“I want God to bless this team so much that people talk about what He did. But it means we got to give Him our best in every area. If we win, we praise Him. And if we lose, we praise Him. Either way, we honor Him with our actions and our attitudes. So I’m asking you: what are you living for? I’ve resolved to give God everything I’ve got. Then I’ll leave the results up to Him. I want to know if you’ll join me?” Grant Taylor, football coach in Facing the Giants

If our new baby boy doesn’t have CHARGE Syndrome, we praise Him. And if he does have CHARGE Syndrome, we will praise Him..Either way, we honor Him with our actions and our attitudes. I want to know if you’ll join me?

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right column.

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Can lightning strike twice? Please Pray, it may have…

Posted on February 8, 2012 by

According to NOAA (National Oceanic and Atmospheric Administration), the odds of getting struck by lightning in one’s lifetime is 1:10,000. One would have better odds of this phenomenon happening than to have a child born with CHARGE Syndrome (1:12,000).

Yesterday we had the usual monthly appointment with the OB with Theresa being at 22 weeks gestation. I will let her, in her own words describe the morning:

“…As I was showering and getting ready yesterday I was thinking about the day ahead and the much-anticipated ultrasound to hopefully find out the baby’s gender. As I was thinking about the baby I was overwhelmed with the thought that THIS baby was meticulously created by God for our family. Down to each hair (or lack there of) on its head. Whether a boy, or girl it was what God planned for our family and would be the best…..

While the news received just moments after being told “it’s a boy!” was shocking, and not what we were expecting, I think we are better prepared than most to receive it. We have been walking this “special” road for almost 11 years together already. Knowing that Kevin, my rock was sitting next to me to continue to hold my hand through this next portion of our walk was my encouragement….not that it could stop the flow of my tears.

After finding out the news that our baby was going to be physically not as perfect as we hoped I was still quite emotional as we stopped at the scheduling desk to discuss our next appointment (a planned fetal heart ECHO as is custom after having a child with known heart conditions). I know it was no coincidence that the scheduler’s radio was playing one of my favorite songs that I think God used to continue to comfort me …..Your Grace is enough! by Chris Tomlin. It was the best song for me to hear at that moment!”

We have become pretty good at reading ultrasounds, MRI’s, heart ECHO’s and all kinds of other charts and tests…we could tell their was something not quite right with our little boy’s face…a cleft. The technician tried to glaze over it, but as Theresa stated the obvious, she went to get Theresa’s doctor to confirm what she saw.

Now, a cleft is actually a very common birth defect and can usually be just an isolated event…but, the Troupe’s have a history of defying the odds, good and bad. We cannot at this time rule out that this is CHARGE related…we have seen lightning strike once before. The statistical chances of another child of the same parents having another child with CHARGE Syndrome is between 1-2%. 20-30% of all CHARGE Syndrome births have a cleft lip, cleft palate or both. We also believe that God DOES NOT deal in statistics!

“…for you have created my inmost being; you knit me together in my mother’s womb. I will praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well…” Psalm 139:13-14

Needless to say we have experienced a flood of different emotions over the past day or two. Excited about having another boy and the realization that we could be walking a familiar path. The difference on this path is that with Matthew we were completely reactive and had no prior hint that we were about to embark on the CHARGE Syndrome journey. In this journey we wait and see over the next several months as pieces are revealed to us through various tests and procedures. Either way, together we are prepared to await (__instert name__ ) his arrival. Please pray for us as we begin the process of further testing…for strength, perserverance…and hope.

At this time we cling to the words of the Chris Tomlin song that we hear on the way out of the doctor’s office. Your Grace is Enough…for me

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post.

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