Lot's Happening

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A lot has happened since our last post when we received the Chiari Malformation diagnosis.  Aside from the celebration of Christmas, ringing in a new year, kids off school and seasonal fun, a lot has happened with Mila.

If the only thing present with Mila was the Chiari Malformation then great,  she has a surgery and then hopefully it is just monitoring.  However, since we started noticing delays there has always been a "but" with Mila... It is said there are big "But's" in the Bible.  Like in Proverbs (Many are the plans in a person's heart, BUT it is the LORD's purpose that prevails.) when the but reflects the opposite, there has always been a "but" with Mila.  While there is tremendous comfort getting a firm diagnosis that is somewhat treatable, there is a but...  

After the Chiari, I was bathing Mila and noticed some unusual spots on her back and bottom.    They were vivid enough to call in Michelle and snap a photo for our pediatrician.  She was alarmed enough to send us, the next day, to get an ultrasound under the assumption that she may have Spina Bifida Occulta.   That freaked me out.  Every other name we had heard for a potential prognosis was novel, 8p23, Chiari, Chromosomal duplication... All this required a google search.  Spina Bifida I had heard of and couldn't believe we may have missed this so far. So, the next day we had an ultrasound, only to find out she was too old for an ultrasound to show spina bifida and she would need another MRI to figure out what is going on at her lower spine.   

After the Ultrasound we had back to back neurosurgeons giving us their interpretation of the MRI that revealed Chiari Malformation.  When we meet with Doctors, Michelle and I tend to hear different outcomes, me from optimism and Michelle from not pessimism, but more from fact.  So what I heard from the first Doctor was from his line of questioning.  "Is Mila a happy baby?" Yes the happiest.  "Has she been progressing in development?" Yes but slowly.    Other questions trigger more emotion from Michelle than me like "How was your pregnancy?" Normal.  Then some, we both fret ,"Does Mila sleep through the night? A firm NO.  "Any constipation?" She has the hardest time going to the bathroom.  "Does she seem in pain?" Only when you touch her neck. These questions, along with her slow development is why we all (everyone who has seen her) have agreed that Chiari is not the only thing going on.  There was a glimmer of hope, when we received the chiari diagnosis, that a surgery could fix it all, but when you get an opinion from 2 neurological surgeons that they are not necessarily related (Chiari to what is going on at the lower spine, her global delays in development and some physical features that geneticists love to point out to us) then there is something else at play. 

So... We went to another geneticist.  These individuals are all brain with a sliver of bed side manner.  The Neurologists were kind of in this camp but they sensed our unrest and matched it with hope.  Geneticists recognize the unrest but only provide fact.  The fact of this matter is, we need more testing.  So after an MRI diagnosis of Chiari, a new revelation of something going on at the lower spine leading to a rush to perform an ultrasound, 2 neurosurgeon appointments and a geneticist, all within 1 month, here we are, back to where we started waiting.

This is where we have been living for 8 months, a season of inconclusive waiting.  Michelle and I have both felt the Lord growing us in the waiting, in the suffering, in the unknown, in our desire for control, and in trusting Him.  Our Love for each other and intentionality for our children has blossomed.   Most importantly we have soaked in moment after precious moment with Mila.  Our Lord is pretty cool that even in trial there can be joy.  Of course we want nothing more than normal for Mila but what wisdom would we have gained... 

James 1:1-3;
C
onsider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 
because you know that the testing of your faith produces perseverance... If you continue reading in Romans 5 you learn that perseverance produces character leading to hope.  We are hopeful!

So what are we waiting for... Preauth from our insurance for a whole exome sequencing of Mila's genes.  This test can reveal all abnormalities up and down our family tree. (another topic for another day).  Once we get the auth, the test takes 4 months to get results.  Both Neurosurgeons were in agreement (a huge positive) on next steps. She will need another MRI in June to note any changes that may or may not occur in her spine as a result of the compression the Chiari Malformation is causing.  The silver lining is that there is nothing acute or urgent that needs to be dealt with today.  The surgeons agreed on most items the MRI showed, like the pooling of  Cerebral Spinal Fluid and poor flow of fluid from the brain through the spine.  The concern is she is at risk of a cyst (called a syrinx) forming in her cervical spine thus the need for a follow up MRI.  A conservative approach is going to be taken because the risk will always rest with the surgery and until their is objective measures for the need for surgery (chronic pain, syrinx's formed, sleep apnea) we wait.  Let's keep her out of the hospital!  

Please pray!  For the next few months we will be enjoying Mila because she does bring us sheer joy!  Your heart does something special with a child going through something like this.  This is why I believe people, more wise with time in a trial like this, say I would not change much because the LOVE makes up for the heartache.  Please pray that if something becomes acute, we see it!  Please pray that Mila is not in pain or discomfort.  Lastly pray for healing!!!  I have had a hard time praying for this, not allowing myself to pray against what may be the Will of God, but after a friend prayed specifically for a miracle,  I felt my heart leap for that conclusion so yes please pray for a miracle in her healing.

On a side note... Mila is a happy, small, yappy 13 month old.  I smile when I think of her and giggle when I am with her.  She brings this out of everyone... JOY.  Our kids nurture her and family misses her.  She is special!

With Love, The Smiths

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