the Journey Continues...
Since this journey began, there is one event that loomed large in the back of our mind... The MRI. Yes, this is common, yes the risks are low, yes they have performed this procedure on 1 day olds (I learned this today), but we were very anxious for this day to come. When we first met with the geneticist, her "observed" diagnosis, that was negative, was RTS (Rubinstein Taybi Syndrome). This was linked to deaths during general anesthesia. This was all I could remember. I hate what the devil can do when your mind is anxious. He makes your nightmares the focal point. He makes you focus on the what if , not the most likely. This was my mind-frame going into the morning procedure. We had praised, and had warriors everywhere doing the same, but even to the minute we handed Mila off my mind ran to the morbid. Here is the great news... She did great!!!
After about 2 hours of waiting, the door to the waiting room opened and a smiling nurse came in to bring a groggy 15 pound angel back to us. We embraced her with tear filled eyes of praise. Thank you Jesus! For me those moments become lifelong memories, not just because of the event but because of the heightened awareness of everything that is good. Mila was her cutest most special, at that moment. My bride was more radiant, seeing her joy, than I can remeber and in that moment, I felt peace! Michelle felt peace. The world seemed, at peace...
We get her home to waiting grandparents and loving brother and sisters. We anticipated the results to be days off but at 4 o'clock our pediatrician called.
Yes we were at peace with the anesthesia of MRI behind us but now we are back to a familiar place... waiting and worrying. A lot was going on, in rapid successeion several months back. Mila meeting with specialists. Us getting false diagnosis and porr opinions to waiting for results. We get the news of the false RTS diagnosis and from then we just fell into routine. That routine was thrown into action when we hear that Mila has something called "Chiari Malformation." Essentially, the base of the skull and the upper spinal area are not formed properly. This creates pain for Mila and can cause some of the other problems, like her growth, eating etc... Wait a second. Mila has been in pain! My Angel, who we would do anything to keep her away from an inconvenience as simple as a diaper rash, has been in pain. So what are the treatments, is there a cure, what is next? That is a scary new path... Mila needs to see a child Neurological surgeon! To my limited understanding there are 2 options, either wait or have surgery. Brain Surgery! Here is another problem, we scheduled her appointment this morning and it is not until January 2nd. At least they are not in a hurry... that is good right?
In a previous post I mentioned I had trouble praying, that Mila is perfect and I love her the way she is. Now I have a specific. Mila may be in pain! She may have to have brain surgery and we have to wait to find out. Please warriors, pray that she is not in pain! Please brothers ans sisters, pray that we get an appointment sooner than January 2nd. Please, family, pray that we can treat and fix this problem!
This Advent season we are trying to memorize with our kids Isaiah 9:6, "For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." That is the Father I am crying out to, our Great Physician, to be with, to heal and to not let go of His Daughter Mila Marie... The toughest 1 year old ever!
After about 2 hours of waiting, the door to the waiting room opened and a smiling nurse came in to bring a groggy 15 pound angel back to us. We embraced her with tear filled eyes of praise. Thank you Jesus! For me those moments become lifelong memories, not just because of the event but because of the heightened awareness of everything that is good. Mila was her cutest most special, at that moment. My bride was more radiant, seeing her joy, than I can remeber and in that moment, I felt peace! Michelle felt peace. The world seemed, at peace...
We get her home to waiting grandparents and loving brother and sisters. We anticipated the results to be days off but at 4 o'clock our pediatrician called.
Yes we were at peace with the anesthesia of MRI behind us but now we are back to a familiar place... waiting and worrying. A lot was going on, in rapid successeion several months back. Mila meeting with specialists. Us getting false diagnosis and porr opinions to waiting for results. We get the news of the false RTS diagnosis and from then we just fell into routine. That routine was thrown into action when we hear that Mila has something called "Chiari Malformation." Essentially, the base of the skull and the upper spinal area are not formed properly. This creates pain for Mila and can cause some of the other problems, like her growth, eating etc... Wait a second. Mila has been in pain! My Angel, who we would do anything to keep her away from an inconvenience as simple as a diaper rash, has been in pain. So what are the treatments, is there a cure, what is next? That is a scary new path... Mila needs to see a child Neurological surgeon! To my limited understanding there are 2 options, either wait or have surgery. Brain Surgery! Here is another problem, we scheduled her appointment this morning and it is not until January 2nd. At least they are not in a hurry... that is good right?
In a previous post I mentioned I had trouble praying, that Mila is perfect and I love her the way she is. Now I have a specific. Mila may be in pain! She may have to have brain surgery and we have to wait to find out. Please warriors, pray that she is not in pain! Please brothers ans sisters, pray that we get an appointment sooner than January 2nd. Please, family, pray that we can treat and fix this problem!
This Advent season we are trying to memorize with our kids Isaiah 9:6, "For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace." That is the Father I am crying out to, our Great Physician, to be with, to heal and to not let go of His Daughter Mila Marie... The toughest 1 year old ever!
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