About Us

My photo
Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


Dark days this past week

It probably doesn't take too much effort to figure out, if you don't hear much from me for a while, it's usually not good.  Sometimes it might just be that we are busy (which is partially true), but our doctors visit last Wednesday was awful.
The neurologist walked me through her MRI a little more and showed me all the abnormalities. (gray matter not as dark as it should be in some places, the hematomas, extra space around the brain-signifying her brain is smaller than it should be)  Needless to say, many things are just not right.  And he told me that at first he was hopeful that the seizures only had the one focal point, but it saddened him greatly to realize they were multifocal and originating all over.  The harlequin syndrome that she presents (1/2 face red, 1/2 normal) suggests issues with the autonomic nervous system and brain stem.  Which, heart and breathing are also regulated by the ANS.  Some tests have come back-all negative.  Basically, they don't have any answers, except that she is fragile and unstable.  He drove home the severity of it all and made sure that I realized... death is a likely possibility for her.  All the questions I had written down were irrelevant at that point.  (verbalizing it, or even just typing it seems to allow it to be more of a reality)
I held it together, but got out of there as quick as I could and by the time we got to the car, I was a complete mess.  We were going to stay with a friend in Nashville, but all I wanted was for us to get home to Daddy.  That drive was good for me...I really was able to just let it all out!  My mind went everywhere and I just cried out to God.  I briefly talked with Shawn, but it wasn't a discussion we really wanted to talk about the details over the phone.  My stepmom happened to call.  I debated answering or not.  That was a point for me to realize that I couldn't hide from this.  I'm glad we did talk, but a good portion, we just sobbed on the phone together.  I processed a lot on that drive.  However, I only made it to Knoxville before I ended up with a killer migraine (of which I have only experienced one other time).  Got a room for the night and then went straight to PT the next day.
The physical therapy visit was a breath of fresh air.  I knew I would fall apart updating them, and I did.  But, they offered so much encouragement.  Some things that I walked away from there with were:
The body is constantly changing, for better or worse.  We are seeing improvements and will continue to see improvements.  The MRI is just one snap shot of what is going on.  The body naturally heals and wants to.  Sometimes it just needs some prompting.
The medical field has the obligation to provide you with the worse possible scenario.  (it's better to process it now than being hit by a freight train down the road)
The brain is constricted for a reason.  He explained facia to me and how it is in and around everything and can either be too relaxed or constricted, causing issues.
A quick fix is not always the best thing for the body to sustain itself.  She is making improvements in areas to better be able to support what's going on with the cranium.
And, Piotr (our PT), reminded me not to put our faith in man (neurologist, PT, anyone), but that God is the Healer and Great Physician.

Our concerns are with the urgency of potential breathing/heart issues, because I do already notice slight breathing irregularities and while in the hospital, there have been consistent troubles getting a decent blood pressure from her and O2 saturation appeared to drop in relation to seizure activity.  So, he gave me the information and we contacted the main center/hub in Connecticut for this type of therapy.  We are in the process of getting that scheduled for November 12, 13, 14.  Though it will be out of pocket, we really do not care.  The alternative of no answers and a hopeless outcome doesn't work for us.  Piotr has provided the most encouragement in all of this and I have seen tangible results with the therapy thus far.  And really, my theories on what is all going on with her, though more continues to be revealed, hasn't really changed that much.  I won't get into that all today.  I know, many are probably thinking, "physical therapist?  yeah right.  what are they going to do?  Good luck with that."  But, it's not the traditional range of motion that many think of with physical therapy.  It is listen/feeling the rhythm of her fluids to know where disruptions are and then prompt the body to do much of it's own healing.   I can already tell that the colon is improving and I am now able to tell when she is exposed to something that her body doesn't agree with.  The trouble is identifying what that something is.  They will work to restore all of her body's systems to be able to support one another.  For those interested in what we will be going to, you can look it up at www.centerIMT.com.  Because it treats individuals, research is based on case studies.  And, you can't deny results.  One of the listed case studies in particular was a description of Maggie's digestive issues, and noted as compression of the vagas nerve.  The vagas nerve affects tons of stuff.
We had a cardiologist appointment today and he told us that her heart looks good!
So...in all of this, we are still very hopeful.  I am doing everything in my power to get to the bottom of this and not settling or dwelling in the thought that this is it for our sweet baby doll.  I sent out a few letters and am working on getting in contact with the real life columnist behind the "House" series.  One of our favorite series-who would have had our own Mystery Maggie case.
It takes a ton to try to process all of this, and if we continue to try to wrap our minds around it, we will go crazy.  Thank goodness we can put our trust in God and know that He knows every precious detail of our little girl and there is a plan in all of this.  Also, we know that she is not ours.  We just have the amazing privilege and responsibility to care for her the best that we can.

Maggie and I went camping with some friends this weekend, while Shawn was busy working.  All of us agreed that it was a very cold night.  Maggie was quite snug in all her layers and as I continued to check on her all night, she was fine.  However, I couldn't wait for the sun to appear.  I continued to check the time and just kept wanting the long cold night to be over.  Joy really did come in the morning when I heard others stirring and working on building a fire.  It was a good reminder to me that though this "night" may be long and the joy of morning seems long away, the Son is always there and will be revealed.


  1. Rachael,
    Reading your blog was a blessing, thank you for sharing your journey with Maggie in such a faith filled way. I met you when your family visited the Spoke Folk tour in Wisconsin last summer. I can empathize with you to a certain extent because while I was serving as a pastor there were several similar situations among families in the congregation. Because you are Christians God's word and promise will be a continuing source of strength for you. You will know the truth of "trusting the Lord with all your heart.
    I am praying for God's peace to cover you, His healing hand to rest on Maggie, and His blessing to be poured out on the skills He has given to Maggie's doctors. God bless you, Shawn, and Maggie.

  2. I'm sitting here reading this, nodding my head over and over and wiping tears. I "get" it, I really do. It is so hard to hear worst case scenarios. It was a relief when the light began dawning, for me, on the fact that medical personal cover themselves by saying the worst case, just in case. It doesn't mean what they are saying is rock solid truth. The only 100% infallible truth is the living Word of God. - Doesn't mean we live in denial. - Doesn't mean what they are saying won't happen. But it does mean that the one who created our sweet little ones gets the final say.

    I remember standing in a little room, looking at images of Caleb's brain. We saw black areas where his brain had bled, but it went beyond just a brain bleed. There were huge clots, and then we saw holes, and just gaping empty spaces. He had bled into the tissue of his brain, and we were told that you can't regrow brain tissue. And like you guys heard, there were even questions of whether or not there were issues with the brain stem. Life sustaining brain stem.

    They were very, very grim in their talk to us that day. They suggested that even if he lived, he would be in a vegetative state. It scared me. I'll admit that mu faith struggled so much in those dark days.

    He regrew brain tissue. Your pt is awesome, and so right. The body works to right itself, and when it is a baby that is dealing with these issues, they are still growing and developing SO much.

    There was a hole in the brain area that interprets speech….. and NOW this almost 10 year old can talk the ear off any one. ;)

    Our Caleb certainly has struggles to overcome. I'm not saying he is perfect and everything turned out just fine. But he is a living, thriving, walking, talking, loving, 9 year old with the most hilarious sense of humor and he is so, so affectionate.

    Please don't hesitate to contact me and chat some time. Praying so much for you guys. God's got this, Rachael!