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

Still doing good...

Mia is still doing pretty good... she'd been a little sleepier since about Saturday and a little less active and she kept rubbing her face and doing other things that made me realize she wasn't feeling as great as she had been a few days before. I noticed more drainage from her ears, but didn't really think too much of it since that's been happening off and on since getting the tubes in almost 2 months ago.

But I just kept watching Mia and knew she wasn't feeling well. I told Monday's evening nurse about more drainage from her ears, so he told the charge, but the charge just said to make a note of it. (Whenever I saw the drainage, the nurses couldn't - bad lighting or whatever. It was strange how I could and then she'd look ok when they'd check just seconds later.)

Yesterday morning, Amy (one of our favorite nurses) had her yesterday morning and I told her about the drainage. She told me that she didn't see any, but that she'll tell Dr. Silva when he came in, and she did. He checked on her before he left in the afternoon and sure enough - she has a double ear infection. They're assuming that it's just from her having pneumonia and it didn't quite clear out - just moved north. =) I'm so glad Amy trusted me and told Dr. Silva even though she herself didn't see anything! Now they know I don't make stuff up!! =) (Not that they really think that or anything....) =) So they started her on antibiotic drops for her ears for 10 days.

Other than that, we've been doing well. It's been great being able to have Mercedes and Mia together again! They are really enjoying being with each other - it's really cute to see that!

Mia is getting very interactive with toys! She loves light-up ones and is trying to figure out how to make the lights turn on. =) It's really sweet!

Mia has been seen by an Early Interventionist (Early Start - school/therapy/etc) and had her 6 month check up to make sure she still qualifies for the program. Because of her delays, and the fact that she is improving, she does! When she started in September, she was basically scored at 0 months or under. Six months later, I'm happy to say that she's 0 months in a few things, but in a few she's 3 months and a few others, she's 5 months!!! =) She was scored a month ago, so she's even improved more since then - we're all very happy of her progress! Keep praying for Mia! =)

Robert had a Spring Break trip to Vandenberg AFB near San Luis Obispo, CA, so he and another Capt. chaperoned around 35 ROTC students. They went in a charter bus - I assume it went well. They left Friday morning and got back last night. Robert should be coming down to San Jose today and will be here until Tuesday morning. That will be nice! I know he's excited to see his girls and to see how well Mia is doing now! He hasn't seen her since the 2nd day she was in the PICU almost 2 weeks ago.

Have a wonderful Resurrection Day on Sunday! =)

Rachael

My daughter completely amazed me!!

I still can't believe this - and I am SO glad I caught this on video!!!! (She had been doing it, so I ran and got the camera and thankfully, she continued!)

Again, if you're seeing this in an email, you might been to go to the website to view the video.



Continue to pray for Mia - she's doing SO much better, though a fever came back today. And she's teething. =)

Rachael <3