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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

That I might show you my power…

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!



  1. Vicki Rehkopf

    Our prayers are continuous for all of you and for those who are overseeing Isaac’s medical needs. May God’s strenght be yours.

  2. Donna Feddick Fagerstrom

    Oh Kevin…we continue to bring you, Theresa and your precious family before our great Father and Creator. May you all know His peace and comfort in amazing ways. We know His ways are not our ways and His thoughts much higher than ours. We know He does all things perfectly.
    With Deep Care, Prayer and Love,
    Pastor Doug and Donna

  3. Teresa Lasher

    As you’ve experienced many times in the past – this promise still holds true as we pray in unison:

    “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church & in Christ Jesus throughout all generations forever and ever! Amen (Eph. 3:20-21).

    Teresa & Steve

  4. Tracy Roth

    I am in awe of your family! Your words are so thoughtfully written and really move me. We continue to hold you close in our thoughts and pray for success in the OR and lots of healing so you can bring your little man home soon!

  5. Bjarnklo

    He just wants to be like his big brother. In a couple years they can make wall paintings for you. Just think of the posabilities. get some canvas, they may start a new trend. who knows! Go guys! Love ya

  6. Corrie Young

    Hello, just wanted to let you know we are praying for your whole family especially sweet Issac. We are the other family with 2 CHARGErs. I am absolutely struck by the similarity in appearance between handsome Issac and our 2nd son w/ CHARGE Tate! http://www.caringbridge.org/visit/tateyoung The resemblance as newborns is uncanny and added to the fact is that they are 2nd CHARGErs in their families!
    Your words show the amazing faith and love you all share as a family. May God continue to bless you with that through these next few days, weeks and years!

    God Bless!
    The Young Family
    Mike, Corrie, Peyton, Cy, Mary Catherine, Tate and Alex

  7. Bjarnklo

    Just heard of the complications, praying for You guys right now

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