Praise

-
It has been easy for us to focus on what could go wrong.  Let me take a second to give praise for all that has been a blessing in this time.

God is Sovereign.  He ordains everything.  What we tend to forget is how in control he is and how little we are.  For me, when I try to control a situation, day-to-day, I quickly forget who is in control and to trust that the outcome is for my good and His Glory.  So I should surrender everything to Him, because if I trust, then that outcome will be glorifying.


We have 4 kids and live 800 miles away from family!  Shortly after having Roman, our 3rd, Michelle's dad took an interim position in Plano Texas and has lived here for 3 years... At the time it was just exciting to have them close, now, what a blessing of support (physically and emotionally) that has been.

The day... The hour, that we heard back from the first genetic test, Michelle's sister, the kids "Gigi" , got word of relocating to Dallas.  Not only have Gigi and her husband relocated, but she got a job at Sofia's school.  Crazy right!   
1 year ago we moved  into the neighborhood we desired to be in.  Not only was the opportunity to move into this neighborhood a blessing from above, but the people the Lord has surrounded us with has been the spiritual support we need, thus showing God's love through His people.

All of these events have brought us to now.  Where we feel blessed with such a large support system, a growing faith, and a loving outpouring of grace that is both common and amazing!

Let's get specific to Mila.  When we started sharing our experience it all seemed bleak...  The news of Mila, the information we have read, the opinions we have gathered, has all seemed overwhelmingly at odds.  BUT...  Since we widened our circle for prayer God has been at work.  The most recent three appointments have been great!  From a "Perfect heart" report from the cardiologist, "lungs look great" from pulmonologist to an encouraging neurological exam, we have no one to thank but the Lord.  Mila herself has shown major improvement.  Just this weekend she began to babble!  She also waved to Michelle, with intentionality and a smile which brought a tear to Michelle's eye and even a comment of "This is the first time I feel like she might be ok!"



I am the optimist so hearing that from Michelle was huge! I think our stance remains, pray for the best but expect the worst.  We know that whatever is going on in little Mila's body is not as drastic as it could be but for the first time in a while we prayerfully hope that maybe her story may be... "look at the power of prayer and the miracle of God's mercy on His people."
  With Love... The SMITH's!

Comments

Post a Comment

Popular posts from this blog

Praise!

-
Since we heard someone say that what they observed in Mila was "either neurological or genetic." We have had very little to celebrate.  Then you think of Mila... Sweet little Mila has been poked, prodded, checked, strapped down, observed and tested... All for the same result... nothing definitive. Yesterday we went to the Cardiologist.  This was a scary appointment because with unanimous consistency all the perceived diagnosis of Mia has come with an asterisk "Increased chances of heart defects."  So with not much to celebrate since May, a sea of unanswered appointments and observed diagnosis that warn of heart problems we take our Mila to yet another appointment, with little hope.  We walk in and poor Mila started crying.  Our hearts sank because she knew that more discomfort was coming.  She stayed strong and fought to keep her contentment. So freaking adorable. She gets hooked up to leads for one test and covered with warm gel for the ultrasound. ...
Read more

Mila Update

-
It has been a while since we sent an update and that is thankfully because things have been good. We have all remained healthy, except for a broken foot (Sofia) and a trip to the ER for Mila. With her it is a reversal of the traditional 4th child feeling. Typically, the more kids you have, the more relaxed you are when someone gets hurts. This is not how we are with our Mila. She fell and hit her head which prompted an immediate 911 call and trip to the ER. Thankfully there was no internal bleeding, just a concussion but we learned a lot from this experience. We learned that we do treat her more delicately. We learned that people in the medical field know NOTHING about Myhre Syndrome, but are more vigilant when you say rare disease. We have been blessed with a great team of doctors who are sympathetic to our situation. An example from that night was that our Neurosurgeon responded quickly to the ER doctors concerns about her Chiari Malformation and made himself available to gi...
Read more

Chiari Decompression Surgery

-
Well POOP.  Today we met with the Neuro Surgeon to hear the results of the MRI.  As a refresher we had an MRI of Mila's entire spine to check for pooling of fluid or the formation of cysts  (related  to Chiari Malformation), Spina bifida and tethered cord.  If you would have asked Michelle and I what we thought would be the outcome we would have predicted correctly. There is no presence of any deformity in Mila’s lower spine which we praise the Lord for.  We were concerned because with Chiari there is a connection to Spina Bifida and we found a bump above Mila's bottom.  This was just shown to be fatty tissue! Tethered Cord was also a non issue, praise the Lord.   Regarding the pooling of fluid at her C1 and C2 vertebrae,  there is a noticeable difference, "more prominent” from the last MRI 6 months ago. Thankfully cysts have not formed on her spine but that does not change the surgeons opinion... We need surgery, Chi...
Read more