Appointments

Rachael is currently in for some minor outpatient surgery and she asked me to write a quick update on what has been happening.

Mia had a neurology appointment last Friday that was just down the street from the CRC. Of course with Mia she has to go in style so she had a full ambulance and EMT crew to take her the half mile to the facility! The crew was really nice and treated Mia like a queen.

The appointment itself went pretty smoothly although there was a mix up that did not allow the neurologist to see the latest MRI Mia had a month ago (the lady will follow up and look at them later though). It does look like we are getting closer to a diagnosis for Mia as the neurologist also suspects she has pontocerebellar hypoplasia/hypodysplasia (don't know yet which one). The best source of information I have found on it is here. Essentially it means that she has an underdeveloped brain stem along with many other brain development issues. For those doing the research on this condition you will read that the prognosis for other cases have not been good with life expectancy being fairly limited.

To what extent Mia's condition is compared to other cases we do not know. We do know that although her development and mile stones have been limited she has been steadily improving her motor skills, responses, awareness etc... From my research this seems to be opposite of other cases like her's where generally the infant starts off okay or has mild complications but progressively gets worse.

At this time we are content to know that Mia is improving in her own way and Rachael and I are focusing on the present. Whether Mia is on this planet for a 100 years or just a few she has already been a bigger impact to many people's lives then most people do in a lifetime. I often think of the time that Jesus was with the Pharisees and they pointed out a man that was lame and could not walk asking Jesus "who sinned, this man or his parents" to which Jesus responded "neither, but that the Glory of God may be revealed" (paraphrased). In this man's case he revealed God's glory by being a testament to the healing power of Jesus. In Mia's case we pray that her story will be the same but we also know that God's glory has and is already revealed in her by her story and survival. God obviously has a plan and a purpose for her, to what end and how long only he knows.

To change the subject a little bit there has been some question of my job situation for the past month. The start of this was my Group Commander (the person in charge of my boss) came out to visit our ROTC detachment at Sacramento State at the beginning of the month. I had a brief meeting with the Colonel which didn't go exactly the way I had planned but none the less was a good wakeup call. His viewpoint was that I really was not being beneficial to the Air Force or our family by working in Sacramento on the weekdays and being in San Jose on the weekends. His viewpoint is it would be best for me to move to San Jose and that I needed to start researching how to do it.

The question everyone is asking is why didn't I go to San Jose from the beginning. The answer is that San Jose did not appear to be an option when I was trying to move a year ago. Two parallel processes were used to get me to California with both of them merging at the end. I initially competed for the Sacramento ROTC job just like I would have for any normal Permanent Change of Station (PCS). At the time only Berkeley and Sacramento had an open position that the Air Force needed to fill and San Jose did not. Considering the cost of living in Berkeley we decided that Sacramento would be a better option for us so that's what we picked. We based this decision on the hope that by the time Mia was 1 year to 18 months old she would be well enough to be able to come home with us.

In parrallel with the above I was also instructed to sign up for the Exceptional Family Memeber Needs (EFMP) program. This program is used by the Air Force to help service members who have family that require special or unique care and are unable to go to just any base. By the time my paperwork went through for this program Mia had already been in California for several months and Sacramento had already accepted me. Rather then try to change course we decided that we would proceed with Sacramento and hopefully within a year Mia would be out of the facility.

Now that it looks like Mia isn't going anywhere any time soon I am now hoping to move to San Jose. There are a couple of processes that we could utilize that would allow me to move to San Jose in a short time period but unfortunately those processes also have their limitations. Right now it looks like the safest bet for moving is to wait until I have served 12 months and then ask for a transfer. The transfer should then be a painless matter of just some paperwork processing and I am ready to go.

The long term problem we are facing however is that Northern California does not have a lot of options for my career field in the Air Force. I spoke with my functional manager (the guy in charge of my career field and assignments) said that after my ROTC assignment is up that I would have to move. I tried explaining to him that it's not a simple matter of just "moving" Mia and that we most likely would decline to have her moved even if another facility was located near a base elsewhere in the country. That would leave me in the position at that time of either separating from the Air Force or taking an assignment elsewhere in the States and leaving the girls in San Jose. Neither of these solutions are close to ideal as I would be choosing insurance coverage or family and right now we need both.

Thankfully there is time to work with and there are a couple of long shot options. I can look into getting an Active Guard Reserve (AGR) job hopefully at Moeffett but possibly at Beale or Fresno as well. AGR jobs are unique in that you can be full time but permanently stationed in the same place. These are very hard to come by and you actually compete for them like you would for any other job, submitting a resumee and doing an interview. I am hoping that in the two years that I have I can start making connections and hopefully be first in line for anything that comes up. There are also options like Lockheed Missiles and Space or smaller contracting firms that do Air Force work.

Well, Rachael just finished her surgery so I have to post this and get the car.

Robert