Update from Geneticist
We had been waiting for results some 6 weeks or more and when they came we felt somewhat relieved because we now had some specifics... or so we thought. The next step was always to follow-up with a Geneticist. Michelle has been amazingly proactive with scheduling Mila's follow-ups, appointments and therapies. The appointment with Genetics was far out (October 2) but we were ok because we had a direction. A Window opened and on Monday there was a cancellation for the following day so on Tuesday 8/8/17 we went to Dallas Children's Hospital to meet with a counselor and physician to tell us all about 8p23 duplication syndrome.
Mila was great, as always, contently looking around playing with her paci and smiling to mommy and daddy. Michelle and I were somewhat at ease because we thought we knew what we were going to hear based on what we learned from the lab results. Boy were we in for a shock.
We gave the counselor a complete history for Mila and her parents, leaving nothing out. Routine stuff. The only thing that stood out was that they did not endorse nor agree with our original test results. That is interesting and very hopeful! Apparently everyone has duplication and deletions in their genetic code and Mila was no different. With our Spirit's lifted we wait a little longer for the doctor to arrive. She was great! About what you would imagine but with more of a bedside manner / mother mentality needed for the delicacies of the situations she likely saw herself in. For about 30 minutes she just observed, took pictures and asked more questions about what has brought us to her.
Being in Healthcare I have learned that physicians are conditioned to give you the worst case scenario to prepare you and to cover their behinds. That does not mean that they are right and we are supposed to take what they advise as fact. She cautioned us that her "Clinical observation" was just that, an observation not a diagnosis....
Please pray that is the case because her observation is more dire than before!
Ok well poop (choice word)! The roller coaster of emotion continues. The time frame to wait has been extended and now we have more tests, more worry and more waiting, 12 weeks worth. Michelle and I both want to scour the internet with prognosis, symptoms, cause and effects of the syndrome but we are cautious because we need to remain optimistic. We need to remain hopeful. and we urge everyone to remain prayerful. For these reasons we will keep her observation to ourselves. It sucks, for Mila! BUT we remain hopeful.
Back to faith... We are surrounded by a so many strong believers and prayerful people. Our small and large community are really a Godsend (I now understand this term) in this time. We have had people cry with us, serve us, even start a prayer calendar for our family. God is present and working. That is the hope we need to have. There is tons in scripture about trial (see Romans 8). Ever since Adam ate that freaking Fruit trial is one of the guarantees; however, as a parent you do not want trials for your kids.
Our Lord is bigger than our trials (2 Corinthians 4:17-18), and his taking of our curses on the Cross is proof that His love is bigger than Mila's diagnosis. During my quiet time today I learned a new word, "antinomy" which is essentially a perceived but unexplained contradiction, or a paradox. Using this situation, we may not understand God's love for us when our sweet Mila gets a bad diagnosis, BUT God's perfect plan for Mila, may be about something bigger! What man intends for evil God uses for good.
With Mila, I pray this diagnosis is wrong! Please everyone pray this. If the reality is this diagnosis, we should all have hope because God's Will and eternal Glory is greater. The antinomy is we may not know the "Why" on this side of Glory.
With Love Justin
Exodus 23:25
Jeremiah 29:11
Psalm 34:18
Proverbs 3:5-6
Romans 5:3-5
Romans 8:28
Mila was great, as always, contently looking around playing with her paci and smiling to mommy and daddy. Michelle and I were somewhat at ease because we thought we knew what we were going to hear based on what we learned from the lab results. Boy were we in for a shock.
We gave the counselor a complete history for Mila and her parents, leaving nothing out. Routine stuff. The only thing that stood out was that they did not endorse nor agree with our original test results. That is interesting and very hopeful! Apparently everyone has duplication and deletions in their genetic code and Mila was no different. With our Spirit's lifted we wait a little longer for the doctor to arrive. She was great! About what you would imagine but with more of a bedside manner / mother mentality needed for the delicacies of the situations she likely saw herself in. For about 30 minutes she just observed, took pictures and asked more questions about what has brought us to her.
Being in Healthcare I have learned that physicians are conditioned to give you the worst case scenario to prepare you and to cover their behinds. That does not mean that they are right and we are supposed to take what they advise as fact. She cautioned us that her "Clinical observation" was just that, an observation not a diagnosis....
Please pray that is the case because her observation is more dire than before!
Ok well poop (choice word)! The roller coaster of emotion continues. The time frame to wait has been extended and now we have more tests, more worry and more waiting, 12 weeks worth. Michelle and I both want to scour the internet with prognosis, symptoms, cause and effects of the syndrome but we are cautious because we need to remain optimistic. We need to remain hopeful. and we urge everyone to remain prayerful. For these reasons we will keep her observation to ourselves. It sucks, for Mila! BUT we remain hopeful.
Back to faith... We are surrounded by a so many strong believers and prayerful people. Our small and large community are really a Godsend (I now understand this term) in this time. We have had people cry with us, serve us, even start a prayer calendar for our family. God is present and working. That is the hope we need to have. There is tons in scripture about trial (see Romans 8). Ever since Adam ate that freaking Fruit trial is one of the guarantees; however, as a parent you do not want trials for your kids.
Our Lord is bigger than our trials (2 Corinthians 4:17-18), and his taking of our curses on the Cross is proof that His love is bigger than Mila's diagnosis. During my quiet time today I learned a new word, "antinomy" which is essentially a perceived but unexplained contradiction, or a paradox. Using this situation, we may not understand God's love for us when our sweet Mila gets a bad diagnosis, BUT God's perfect plan for Mila, may be about something bigger! What man intends for evil God uses for good.
With Mila, I pray this diagnosis is wrong! Please everyone pray this. If the reality is this diagnosis, we should all have hope because God's Will and eternal Glory is greater. The antinomy is we may not know the "Why" on this side of Glory.
With Love Justin
Exodus 23:25
Jeremiah 29:11
Psalm 34:18
Proverbs 3:5-6
Romans 5:3-5
Romans 8:28
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