It's been quite a while since our last blog update and a lot has changed over the past month. Rachael has been super busy but she hopes to give a full update on Mia in the next couple of days or so. Overall Mia has been doing very well. She has started to use her hands a lot more and has even started to grasp things; something she hasn't ever done before. She has been doing some breathing trials called Continues Positive Airway Pressure (CPAP) for 15 minutes at a time. This is a significant development because for over a year we thought she didn't even have a respitory drive which would make CPAP impossible. In reality Mia does have a drive but because of her low muscle town her breaths are very shallow causing the machine to not pick up her own breaths. The RTs at the CRC found the key is having the sensitivity set high enough on the machine so that it does detect her breaths. This is a huge answer to prayer because a respiratory drive is something that can be worked with for weaning. Without one it would be impossible to ever wean her off the vent. We still don't know if this means Mia will one day be off of the ventilator but at least it gives us something to work on and hopefully progressing in that direction. Rachael will hopefully fill in more details on how these runs have gone.

As far as our family/work situation we have had a huge answer to prayer! It looks like the Air Force has agreed to move me from AFROTC Det 088 at Sacramento State to AFROTC Det 045 at San Jose State! When I get back from Alabama (more on that later) I will wrap up my responsibilities at Det 088 and move sometime during September. This will be the first time in over a year that I will be with Rachael and the girls for longer then just four days at a time. I have to thank my current boss at Det 088 LtCol Davis for helping me as well as his boss Col Martin at AFROTC Southwest Region for really pushing to make this possible. There is also a MSgt Walker at the Air Force Personnel Center (AFPC) that has been instrumental in making this happen.

Just before I left for Alabama we made the big push to move out of our Sacramento house. Thanks to the help of my cousin Josh, my Uncle Thor, my mom and dad, Rachael's family and others we emptied our house in about 4 days. Rachael and I had thought that we already eliminated a lot of stuff but after this move it is apparent that we still have a LONG ways to go before we will fit comfortably in our one bedroom apartment. Right now our apartment is standing room only, one entire wall consists of storage bins that is over 6 feet tall and probably close to 20 feet long. We also have a lot of stuff up in Chico including all of my woodworking tools I have. Over the next several weeks Rachael hopes to be able to go through all of the stuff and sell/donate/eliminate anything we don't need. What is left will either be used in the apartment or be stored up in Chico for the future.

Just before we moved, Rachael and I were looking at how to furnish our new apartment. After looking at the options at Ikea and other stores we decided that since I have been buying all of the woodworking tools for the past two years that we should just build our own instead. Even though we were short on time we preferred to spend money on wood rather then purchase furniture that we wouldn't really care about. Rachael had several things she wanted made but time only allowed for us to build an entertainment center and a large bookcase. Working with Rachael on these projects has been great; we seem to have finally found a common interest (aside from our girls) that we both enjoy doing together. It is very special for me to have Rachael by my side working together building something we will have for years to come. Rachael may post some pictures later on so you all can see what we have been up to.

Now that our house is empty we have been in the process of trying to get it rented out. We decided this time to use a property management company since we really didn't want to have to worry about things. Yesterday we found out that it looks like we may have 4 girls that are graduate students that want to rent the house and hope to move in by August 6th. Rachael and I are a little concerned about the age factor and that they our students but our property manager does a thorough background check and even spoke with the girls parents. We just hope our house doesn't turn into the next party house... It's an answer to prayer to have it rented but we will continue to keep praying that these renters will respect and care for the place.

Moving on to Mercedes; she is doing very well. Rachael and I have been discussing her starting school this fall. We are going to home school Mercedes and I know Rachael is looking forward to it. Our number one goal this fall is to have Mercedes reading books on her own. It's hard to believe she is already at this age.

Finally, for those of you that don't know I'm at Maxwell AFB located near Montgomery Alabama from July 23rd to August 29th. I will be leading a group of Air Force cadets for close to a month putting them through their field training (boot camp) encampment. I will be responsible for up to 22 cadets and will be working from 3:30 am till at least 10:00 pm every day for the next 30 days. I am excited about it but I know the work will take it's toll on me physically and mentally. I appreciate your prayers in keeping me sustained through this time.

Well, that is all I have for now. I hope that Rachael will be able to post an update in the next couple of days.

Robert

We've moved... mostly!

We moved into the apartment on June 8th, with whatever Mercedes and I absolutely needed. Unloaded everything that belonged to us from my parents' home and the trailer (which was a LOT!)

Every week, Robert and I have been filling our cars and bringing whatever we can down to San Jose, as well as doing more elimination and packing while we're in Sacramento.

We only have a few loads left before we actually have to get a small moving truck for the bigger pieces that won't fit in my car. It's actually been working out great!

The apartment is perfect - it's small, but I'd much rather have small, than too big! Costs a lot more money to fill a big place! =) Mercedes loves her room (she's in the dining room) and after our first night, she proudly told me, "Mommy! I can see the kitchen from my room!!!" Her little space is the best spot in the house!! =)

Mia's been doing really well - her 1st swim day was yesterday! Of course she was sleeping through the first 20 minutes of it. I don't think she was very sure of the water she was sitting in. =) She sure looked cute, though! I've posted some pictures on Facebook, but for here, you'll have to wait a few days (or a month at the rate I'm going!)

She finally has a date for the 3 hour appointment with all the specialists at Stanford. September 22nd. They're seeing if they can pull a few strings to get her in earlier, but for now, that's when it is. It's a super hard appointment to get and it's very unlikely anybody will cancel for Mia to go sooner!

That's about it for now... I need to get Cedes up. She's spending the week with Nana and Pops while Willow and I head up to Sacramento until Sunday getting things done up there.

Pray for my grandma, Tillie. She's almost 94 and has a really bad UTI. She was taken to the ER on June 4th, admitted to the hospital, stayed there for several days, and now is in a senior home/hospital. She seemed to be doing better, but when I saw her on Sunday, she looked like she had a cold. =( She just looked very tired, weak and sick. I didn't want to stay long because I didn't want to chance getting Mia sick, so I only stayed a few minutes. My parents were there earlier that day and my Uncle and his family were there when I was. This is the only illness I ever remember her having - she's always been super healthy and strong. Thankfully, she's in Sacramento, too, so whenever I'd go up there, I'd always visit her anyway. It's so much nicer than only getting to see her once a year when I'd be in town for Christmas when we lived in Las Vegas! So, anyway, keep her in prayer, too. =)

Love to you all,
Rachael

Wonderful news!

Hi Everyone!

We signed a lease at the apartment complex practically next door to Mia's! We get the keys on June 8th, so right now Robert and I are in Sacramento going through the house, figuring out what we need to eliminate and what absolutely needs to come with us. The apartment is only 607 sq ft, so it's even a little smaller than I originally thought! We need to get rid of 800 sq ft of stuff, plus the garage, so we have our work cut out for us! We'll be taking a break from it all for a few hours - today is our wedding anniversary! It's gone by so quickly... it's so hard to believe it's been 5 years already!

To make a very exciting story short, Mia has begun CPAP!! I know most of you have no idea what that is ... CPAP stands for Continuous Positive Airway Pressure. It means that Mia is still on the vent on all of her normal settings, except for an important one - a breath rate!!! Her RT was curious because he noticed Mia was breathing above the vent quite a bit, so he tried her on CPAP ... and she did great! He thought he was going crazy, so he brought in another RT... yup, Mia was breathing on her own! So he brought in the nurse practitioner for the last 5 minutes, and she was still doing great! Mia breathed on her own for 15 minutes!

The next day, Tuesday, Jay tried it again, and she did great! On Wednesday, he did it again, and she did great! Mia will be doing CPAP everyday for 15 minutes when she's wide awake and active. Everyday, Mia has been blowing us away! She gets so worn out after the 15 minutes is up, but that is a HUGE improvement!!! Her co2's are staying great and her volumes (how much air fills her lungs) is great when she's breathing by herself, too. The RT stays with her the entire time to make sure she doesn't set off the apnea alarm (stops breathing).

We are so excited for Mia!!! We're so excited that Jay noticed and took a chance with her. Oh, and Mia's been pretty much on room air all week!! =) What a big girl she is!!

Continue praying for us as we transition down to San Jose. Packing and eliminating is going well so far, but keep praying! We're planning on having a yard sale on Monday to try to get rid of most of the things we don't need ... and to try to make some money to buy furniture that will work for the small apartment!

Oh! Last Wednesday, May 26th, was Mia's 1 year anniversary of being a patient at CRC! So we celebrated, of course! Everyone loved me - I took a Costco carrot sheet cake along with some petite brownies. =) Mercedes made a thank you sign for everyone at CRC and my parents brought a Thank You balloon! =) I wrote out thank you cards to most of my favorite RT's, nurses and staff. I had to limit myself, otherwise I would have had to write over 100 cards!! =) I'll post pictures soon.

Keep praying for Mia's healing!

God bless,
Rachael

Pictures

http://www.facebook.com/album.php?aid=166393&id=614762171&l=41bce1b50f

Enjoy these recent pictures. There are 10 pages, so the most recent are on the 10th page. =)

May Update

Hi everyone,

It's been forever since I last updated! Forgive us! Life has been good, but very chaotic, on top of our normal everyday living. God is good, though! =) He always gives us the energy we need to get through everyday.

Thankfully I am healing up very well from my surgery. The doctor says I tricked him because we thought I only had 1 small hernia, but it turned out I also had a large one and a medium one hiding in the mix, too! The first 5 days after the surgery were very painful – especially when I comedic family would make me laugh, then I'd start crying because it hurt so much! Haha The incision is right above my belly button, so laughing, coughing or sneezing wasn't something I was looking forward to doing. (I got them while pregnant with Mia because I got SO big from Mia not swallowing the amniotic fluid) Thankfully I didn't sneeze for a week after the surgery!! That was incredible! I coughed a few times, but it was around day 5. I'm so grateful for that!

Every once in a while when I do too much, I start to feel slight pain, so I need to cool it and slow down so I don't end up hurting myself. I should be resting a whole lot more than I am (haha I had a garage sale 4 days after the surgery – made good money, but that was stupid!!)

Mia is doing really well. She had a few days that weren't so great last week – some of you probably saw my Facebook statuses about that, but thankfully, she wasn't getting sick. She needed more air in the cuff on the trach to stop the air leak and to keep her better ventilated. Since then, her co2's have come back down into range and they were able to wean her settings almost all the way down to where they were before.

Mia is so much more active and is really starting to explore her toys and their textures. If she sees something, she tries to reach for it to feel it. It's super sweet to see her growing up!!

The ENT (Ear Nose and Throat) doc came to see some of the kids last week and he saw Mia. Nothing too much was talked about as far as the ENT stuff, but we did mention our concerns for her – her limited jaw movement. She CAN move her jaw, so we don't think the jaw is the issue. BUT she has a lot of extra tissue on the inside of her cheeks which makes her mouth not open much. We're really worried about that because of the fact that she'll be getting her molars soon.

The ENT is going to set up a 3 hour appointment for Mia to see about 6 specialists at the same time up at Lucile Packard Children's Hospital (Stanford) including a cranial facial specialist and a geneticist. Prior to that, we'll be going up to Stanford for Mia to get a 3D cranial facial CT Scan so all the specialists know exactly what's going on with her mouth. I got a call last night from the Radiology department at Stanford saying that they received the referral and they will be calling in the next 72 hours to schedule the CT Scan.

Two nights ago, I was holding her and her mouth was as opened as it gets (about ¼ of an inch between her upper and lower teeth) and there was really good lighting, so I was able to see inside her mouth a tiny bit... she already has TWO bottom molars!! They're ¾ of the way in already, so we really don't have a whole lot of time to work with before her top molars come in, then she won't have any room to open or close her jaw. Be praying!

Robert is almost positive he'll be getting moved down to San Jose State University's ROTC detachment in July or August, so we're starting to really downsize our things in preparation for the move down to San Jose. If all goes the way we're praying it does, we'll be living in a small 670 sq ft 1 bedroom 1 bath apartment just 3 complexes over from Mia! Coming from a 1500 sq ft house, we really have to downsize because we're not planning on having a storage unit. Time for me to really get serious about what we truly need and what we can live without. We can definitely live without a lot since most of the house is still packed up! I've been without it for a year already. That's a good start already. =) I'll be going up to Sacramento about every other week until the house is packed up. We have to get our house ready to be rented out, too. That shouldn't be hard because it's basically brand new. It had just been renovated and everything is still move-in ready. Be praying we find an honest renter for our house and that we'll be able to get what we ask for rent.

We don't have a lot of time to work with because Robert is heading out to Maxwell AFB in Montgomery, AL in the end of July for 6 weeks, so ideally, we'd like to be moved out of the house and into the apartment by early July.

Mercedes is our big Princess. =) She's such a good girl, although we've been slipping and letting her get a little too 'buddy buddy' with us. It's going to take a little bit of effort to instill respect of authorities, parents, grandparents, etc. She knows what's not allowed, but like any child, they see what they can get away with. On Tuesday, I took her to a preschool class that's run by other Mom's who take turns teaching every week. Mercedes has been twice before, but it was my first time seeing what it's like. Since we're really going to get serious with school this fall, we'll be “enrolling” her in this once a week class so she knows that we're not torturing her with school and that she can see that other kids do school, too, and are happy about it!! =) She's really liking it now. =)

Sorry this is so long – I really should be updating more frequently! =)

Pray:

Continued healing for me from my hernia surgery.

Healing for Mia's brain, muscles, etc.

Mia's CT scan and appointment

Moving

Renting our house

Robert's job

Our consistency with Mercedes' character training.

Mia's hearing test on June 15^th.

Thank you!

Blessed,

Rachael

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

A short update!

Hi everybody,

Sorry I haven't been posting updates this past month. Definitely wasn't intentional - life has been so busy lately.

Mia is doing very well! About two weeks ago she was able to be on just room air (21%, what we breathe - no additional oxygen!) this past week, she's been needing 0.5 liter (23%) to stay stable, but that's definitely not much to be requiring. =)

She's improving so much more - while I was in Sacramento all last week (from Monday-Monday) my Mom was able to get the paci in Mia's mouth and Mia actually allowed her to get it in!! Because of it, her jaw has loosened up even more!! Whenever we can and when she seems up to it, we also give her a lollipop to lick and taste. She loves it! She tries so hard to grab the stick and put it in her mouth herself. It's really sweet seeing her so active!

Mercedes is doing great, too! She's such a great big sister and has now learned how to suction Mia's mouth and nose with Mommy's supervision! It's really cute!! She sees Mia starting to bubble or drool and she says "I want to suction!!" Mercedes is also no longer needing diapers at night! She's been waking up dry for a few months, anyway, so while we were in Sacramento, I decided just to keep her in her normal "chonies" and see how she did. She's been doing great every day!

The main reason for this update is that Mia sees the neurologist tomorrow morning - April 23rd. Please pray for her! I'm not really sure what exactly what to expect or what we should be hoping for, but I guess we'll find out in the morning!

I'll update again tomorrow or Saturday!

The picture was taken by Robert's sister, Katie Watkins, the day before Easter during their visit with Mia. =) Never knew right in front of Mia's crib could be so beautiful! =) Thank you for taking the pictures, Katie!!

Rachael