Christmas Newsletter 2010

Merry Christmas!

Praise God, we are doing well! This year has flown by so fast … that's usually the case when you're extremely busy, I suppose. =)

Our time in Sacramento was very short lived. We bought our house in October of last year and just a few short months later, Robert's bosses boss came to visit the Air Force ROTC detachment at Sacramento State and told Robert that he needed to be down in San Jose with Mia, Mercedes and myself. At the time, he was given a 4-day weekend pass to be with us in San Jose. Mercedes and I would also go up for around 5 days a month to live together in our home. It was fun, but different trying to relax, but still needing to unpack and set up the house. The drive to Sacramento was always relaxing and just so pretty in fall/winter/spring. With the green rolling hills, and beautiful clouds, the drive was just what I needed! =) 

Robert: Robert is definitely enjoying working at San Jose State University AFROTC Det 045! Robert actually graduated from SJSU and became a commissioned officer through AFROTC Det 045 5 years ago, so it's pretty neat to be back, but on staff! It was challenging with Robert working in Las Vegas and then Sacramento before getting his assignment to San Jose. That was a long 18 months of not really living together, but we're so grateful to be together again! Robert began working on his Masters in Science of Aerospace Systems at the beginning of November. I'm glad he's enjoying it, otherwise it'd get very difficult for him to come home every night and spend several hours reading the material. We're grateful it's an on-line course – most of the time he studies in Mia's room, so he's able to be with her every evening!

Rachael: My days are very busy with being a wife, a mother to Mercedes and Mia, trying to get our new tiny 600 sq. ft. apartment in order, etc, but I wouldn't change any of it! I am just so extremely blessed that we were able to find a place to live just down the street from where Mia resides!! Just a 2 minute walk! I am also very grateful that my parents are so willing to care for Mercedes so I can visit with Mia by myself at times, or so I can go to the gym, or when Mercedes is sick. When she's sick, she can't go visit Mia, which usually means I have to stay home with her and I can't visit Mia, either. I am very blessed to have my family's support! That's pretty rare for a Military family being stationed so close to family!

Mercedes: She has grown up so much this past year! She started Preschool and is LOVING school! She is thriving in reading and spelling, too! She blows us away!! She is such a joy and is a wonderful big sister! Every time we drive by the Children's Recovery Center, she always yells out “Bye Meesters!! I love you!!” She's made many friends at CRC; patients, siblings of patients, and staff included! The therapists say she's going to be some sort of Therapist when she grows up! =) She loves going to church and is so excited to go to Sunday School and her love for God grows each day. She is also quite the prayer warrior! She prays for Mia to get better so she can live at home with us as often as she thinks about it – which is several times a day!

Mia: What an incredible little girl our Mia is!! I have tears in my eyes just thinking about the miracle she is!! She has improved so much this past year – and is SO big now!! I can't believe she's going to be 2 years old already!! She loves music and will “sing” whenever the Music Therapist starts singing and playing guitar! As soon as the music stops, Mia stops. It's so cute! She is also quite active and rolls from side to side now... very fast! Developmentally, she has also drastically improved! Just in April, she was “scoring” in the 0-4 month range mostly and in November, she's mostly scored in the 9-12 month range!! She is still 100% ventilator dependent, but she is breathing much more on her own than she was a year ago. She is very slowly being weaned from the vent settings and we continue praying for her health and development! 

 

Our daily life is extremely challenging, but there are so many more families with even bigger challenges. We are so blessed to serve the Creator of the universe, Who made of each and every one of us! Remember the reason we celebrate Christmas – the Savior of the world, Jesus Christ, was born to die to save us all from our sins so we can spend eternity in Heaven with Him!

Blessed,

The Adamis Family

New Video of Mia!

I'm pretty sure you will have to go to the blog website to view this, if you're reading this in your email. =)

Mia is doing really well! Everybody is amazed with how much more active she is and it's so exciting to see how much she's progressing!!

Enjoy this video from 2 days ago. She's just playing in her crib. =) Usually when we call to see how she's doing towards the end of the P.M. shift (just before 11pm), either Mia is asleep, or the nurse says that she's wide away, just playing with her toys in her crib. When she's playing, this is what she's doing. =)



Have a wonderful Thanksgiving tomorrow!

Blessed more than we deserve,
Rachael, Robert, Mercedes and Mia

Happy Thanks Giving!

Hi All,


Rachael is open in oregeon for a family wedding so it's Mercedes, my mom, and myself holding things down for the weekend. It's been pretty chaotic for the last few weeks. LOT's of stuff going on and it never seems like we have any time to slow down.

My new job is going very well, and I'm really happy to finally be out of Sacramento finally! My new co-workers and I are getting along great, everyone does their job and helps each other out as needed. It is unknown how long I will be able to work at San Jose State as an ROTC instructor. I think for sure, I should have two full years but there has been discussion about how to make that longer if necessary. The big issues with staying to long in one spot is it will affect my long term career with the military.

In addition to everything going on, I have started my masters in science degree in Space Studies through online correspondence.  I have dragged my feet for some time in getting my masters but in order for me to promote to my next rank it's almost a requirement. So far my studies have been a lot of reading, thankfully it is actually interesting reading for me as it's basically a review of my undergrad degree in Aerospace Engineering. At times I'm a little overwhelmed that I have two years of this to go, but it will be worth it in the end I suppose. At the very least... it will be a big boost to my hirability should I need to get out of the Air Force.

Mercedes is no longer a little toddler but now a full fledged little girl! She keeps Rachael and I very busy with all of her little doings and activities. For the most part she has been very good at dealing with our crazy life. Rachael has been going through pre-school stuff with her and she really loves to do all of the activities. She even likes to do them on Saturday if we let her! Our big goal is to get her reading on her own so that she can be reading books on her own. She has a great imagination and it will be fun to open up all sorts of different worlds to her through books.

Moving on to Mia, she has been doing well lately. She seemed to be having a small cold a few days ago but it looks like she might be over it. The vent weaning has been really slow so far. Each time she starts to make some good progress she ends up with a cold and they have to start all over again. At the current rate, it does not look like she will be getting off of the vent any time soon. There is still question if she will ever be able to get off the vent but that's something only time will be able to tell us. Aside from the vent stuff, her therapy seems to be progressing really well. She has lots of movement in all of her extremities, and she is able to hold her head up fairly well now. Now that she is able to control her head, I have now been working with her to try to get her to be able to hold herself up in a sitting position. So far she is doing pretty well, her core muscles are still pretty weak but there are times that you can feel her trying to prop herself up. She is also pretty much able to roll over now! The tubes from the vent get in the way so she still isn't able to fully transition but I think if she did not have the tubes she would probably be rolling all by herself now.

For anyone that is interested in visiting Mia please let us know! Knowing that Mia has other people visiting with her throughout the day helps us not be so stressed out about not being there as much as we would like. For those that are interested in visiting on a regular basis you could consider being a volunteer at the CRC. They are looking for people that would like to come in and hold baby's on a regular routine because many of the kids at the CRC have parents that are either uninvolved or they live to far away to visit every day. If you or someone you know has extra time on their hands and loves to interact with children then this could be a ministry opportunity. Just talk to Rachael and let her know you are interested and she can explain who you need to talk to at the CRC.


Finally, Rachael has been very busy between Mia, Mercedes and myself. We are enjoying being just a few minutes away from Mia but it is also taking it's toll on us physically, mentally, and emotionally. I think the biggest issue we deal with now is that we can't take time in the evening and relax at home because we feel like we should be with Mia for as much time as possible. By the time we do actually get home from visiting Mia it's usually past eight and we have to get Mercedes in bed. By the time we have time to relax and rest, it's usually past 9 and we have to go to bed to restart everything the next day. Considering this chaos, Rachael and I are looking at taking some time off together in order to recharge ourselves. Over the past two years, we have not taken a vacation and any time that I have taken off was because we were in the process of moving, un-packing, re-packing etc... After two years of this, I have so much vacation time built up that I need to start using it before I start losing it (Air Force only allows you to have 60 days of vacation stored up, beyond that you start losing the days). We are excited to be able to spend some much needed time on a relaxed schedule.

That's all of the updates I have for now. Thanks again for all of your thoughts and prayers.

Robert

Huge sigh of relief!

Having Mercedes' Whooping Test results within 48 hours didn't exactly happen. The people at the lab took longer than the doctor expected, but finally, this morning we found out that swab 1 came back negative for whooping cough (pertussis). I'm not sure what the swab 2 is testing for, but we should get those results Friday or Monday. We're so grateful that it's NOT whooping cough!! Hopefully it was just the common cold, but of course we can't take any chances with Mia's delicate situation.

If it is just a common cold that we had, Mia got hit hard with it. She hasn't been well at all since about Saturday. Yesterday, things got bad enough that Dr. Silva ordered a chest xray to see what was going on. Thankfully, the xray came back perfectly clear! The RT's have been incredible - they've been so on top of things suctioning her to keep her clear and doing vent changes to keep her co2 within range, giving extra breathing treatments to loosen all the junk in her lungs, etc. The nurses have been great, too.


On Monday, they did routine blood work, but yesterday, they did some extra blood work to test for other things to make sure she's okay... Results came back just an hour ago and Mia is positive for bronchitis. We are so grateful it's "only" bronchitis!!! We know it can still lead to other things and we know she can get better or worse, but we're so glad it's not anywhere near pneumonia-like or worse. =)

Mia got her first dose of antibiotics right now, and will get them for the next 7 days. Keep praying for her and the rest of our family. Mercedes still has a nasty sounding cough once in a while, but she's doing well. =)

Homeschooling is going well. I have to make sure Mercedes' attitude stays where it needs to be - gotta break that will, if we're going to get anything productive done!! She's stubborn just like her Mommy and Daddy. (More like her Daddy, though.) ;-)

We haven't seen Mia since Saturday, actually, I did sneak in to see her Monday night after my Bible study, and it was the sweetest thing. She was sleeping (it was almost 10pm) and I stood on the stool and was just admiring her beauty, and said "Hi my baby girl!! I miss you so much!! ......." and she heard my voice, woke up, turned towards me and moved around just a little bit, then got this totally peaceful look like "sigh, Mommy's here!" It was so sweet! =)

I can't to hold her again!

Rachael

It's October already?

I can't believe how fast these months have flown by... and how big our girls are getting!! We almost have a 2 year old and 4 year old!! Now that's crazy!!

Dressed to impress!! My little doll...

Riding in style!

Mia's 3 hour appointment to Lucile Packard Children's Hospital turned into an outing of almost 6 hours from pick up to drop off, and borderline useless. Out of all the specialists we saw, the one who might have any sort of anything to go on is the Geneticist. He was the first who had the thought of Pontocerebellar Hypoplasia, so we researched it (we meaning Robert) and several months later, suggested to the Neurologist that it may be what Mia has. She agreed that it looked very similar and decided to go ahead and diagnose her with it for the time being.

I mentioned all this to the Geneticist, so he says he'll be emailing Mia's most recent MRI to a group who specializes in only Pontocerebellar Hypoplasia, and they'll be able to see whether or not she has it. If it looks like she does, then they'll do blood work (it can now be found via blood) to confirm. I'm going to be calling the Geneticist team this week to see if they've sent the MRI yet.

The main specialist that should have provided the most help was the Oral Surgeon. She was obviously not thinking clearly. From the last blog I mentioned Mia's mouth being very tight and there not being a whole lot of jaw movement. We showed this doctor Mia's limited jaw movement and she asked if Mia's eating anything by mouth. We told her no, because she can't open her mouth and that she gets everything through the g-tube. Her wonderful professional opinion was that once Mia is less dependent on the g-tube, then we can think about doing something with her mouth. I repeated what she said. Jay (the RT who went with us) repeated what she said. Robert repeated what she said, all making sure we understood her correctly and if that's really what we heard. To all of us, she said, yes. We're thinking, "Are you CRAZY?!" How in the WORLD is Mia supposed to be less dependent on the g-tube if she can't open her mouth to eat?? Yeah, we were less than happy. Oh, another thing this fine doctor said was that she wouldn't do any kind of surgery until Mia is full grown - around 16 or 17 YEARS old.

Blue lips!! =)

I came back to CRC and gave this insane recommendation to the Occupational Therapist that works with Mia on oral stimulation and taste tests, etc and she, too, thought it was crazy. But, all it did was push us to do what we can to help Mia. So, the next day (on my birthday!), Mia had some applesauce and LOVED it! She was so calm and content with no fighting of any kind. It was so cute to see!! They put blue dye in it so if Mia aspirated, blue would come out when suctioning the trach. If she actually swallowed it, it should show blue when checking the g-tube. Mia only had 1/2 a teaspoon of applesauce through an eye dropper and it never came out from the trach! It also never ended up all the way to her stomach, so it probably just wasn't enough to go that far, but either way, we were so happy! That was a happy birthday to me!!  

Mommy's birthday

In a few seconds, she'll start screaming and kicking.

Mercedes had her root canals done last Tuesday and I'll tell you what... having your child on your lap while the Anesthesiologist is putting her under? Not enjoyable. He walked us through with how Mercedes was going to act while getting knocked out and she did everything as expected, which is VERY hard on a Mom. =) Another thing that was very hard to see was Mercedes on a pulse/ox monitor. Obviously it's not unusual to see it, since I'm around it everyday, for the past almost 2 years with Mia, but seeing Mercedes on it? I knew she was fine, but knowing that both of my daughters were on it was hard. Mercedes came out of the procedure great, though her bursts of screaming and crying and kicking was about every other minute, then she'd be asleep again. Thankfully that only lasted during the car ride. Once we were home, I gave her her promised surprise and she was very happy to receive her very first Little Einstein's DVD. She watched that on my bed while having a popsicle until she was fully recovered. It took her 3 days to finally look at her new silver-capped molars, then while brushing her teeth and making silly faces in the mirror to see them, she proudly said, "I wuv my new siwver teef!!" And she truly does! She loves putting her fingers in her mouth to stretch her lips to show off her silver teeth! haha

She's loving Cubbies!

Mercedes and I have been definitely keeping busy. She's now doing AWANA Cubbies at a near-by church along with her cousins and is loving it!! She got her book, vest and bag last Sunday and is so proud of them!

She loves doing her Preschool (meets every Tuesday morning) homework as well, and starting tomorrow, we'll be starting our homeschooling. That's definitely been keeping me very busy - and it hasn't even started yet!! It'll be fun - I'm pretty nervous, but I know once I get started, I'll love it and I'm sure Mercedes won't notice if I make a mistake here or there. She's so ready and willing to learn. It's wonderful. =)

Robert, Mercedes and I have been pretty consistent with waking up and going for a 4 mile walk in the mornings before he goes to work. We've gone for walks in the evenings, but I definitely prefer seeing the sunrise instead of it being totally dark when we come back.

With us being sick for the past few days, we hadn't gone for walks, but we definitely made up for it yesterday! We did an 8 mile walk yesterday morning to Vasona/Oak Meadow parks. It was a really nice walk! I woke up a little stiffer than usual today, but ... haha Mercedes had a great time since this time she was actually able to get out of the stroller and play on the Air Force jet they have there and go down the slides and swing. She's finally figuring out how to swing!! She's doing a great job!

Oak Meadow Park!!

You can keep us in prayer. A family that we're close to just found out that their kids were positive for Whooping Cough. After seeing them, we'd noticed that Mercedes seemed to be getting the sniffles, then it got a little stronger, and now it's a pretty strong and bad cough. As soon as I got the call that her kids are sick, I immediately called Mercedes doctor to see if she could be seen asap. They asked for her last name and when I said Adamis, the gal gasped and said "Oh, is she home now?!?" I told her no, but it's her big sister who's sick, so they got Mercedes an appointment an hour later since they don't want to risk getting Mia sick.

Nasal swabbing was no walk in the park for Mercedes. It took the nurse, myself and my Mom to hold Mercedes down. They got the two swabs they needed and if it comes back positive for Whooping Cough, we'll find out today. Either way, we'll hear from the doctor tomorrow. If it is positive we need to let CRC know right away so they can test Mia and put her in isolation. Mercedes' doctor isn't taking any chances, so she already put Mercedes on the medicine to treat Whooping Cough because she's worried about Mia. I love this doctor! Kimberly Pitts-Davis, for those of you in the SJ area!!

Right now, Mia is pretty sick. They've had to increase her breath rate from 14 to 22 to keep her c02 down, and she's requiring more oxygen to keep her sats up. She's super junky and we're just hoping it's only a cold that Robert and I had earlier this week and nothing more. Jay changed some orders so she's getting an extra breathing treatment to loosen secretions and they're doing it via IPV instead of the regular nebulizer treatments.

Robert is enjoying his new job and his boss and coworkers. We're very grateful that he was able to get this transfer. It's definitely what we all needed. Right now he's working the Salinas Air Show, kind of at the last minute because they needed someone. It kind of worked out anyway, since Mercedes and I are skipping church, Cubbies and 2 extended family functions today since we don't know if she's positive or negative.

Keep us in prayer!

Blessed,
Rachael

This pic is too cute not to post! She's getting physical therapy with Karen. =)

Happy September!

So much has happened since I last updated. Life has been basically chaotic, which is why I hadn't gotten around to updating the blog in such a long time! I'm really realizing that I can't function very well when stressed! =) Go figure!

When Robert left for Maxwell AFB the end of July, I thought I'd be able to relax a bit and finally unpack the tiny apartment that was extremely crowded with all of our stuff from the house, but that didn't happen. The morning after he left, Mercedes, my family and I hurried up to Sacramento to be with my Grandma Tillie, who was back in the hospital. We knew this would be our final days with her, so we wanted to get there as soon as we could. It was such a beautiful time. Grandma was surrounded with so much love and it was really peaceful. You can tell she was so happy to have all of us around - that's why she hung on as long as she did! She didn't want to miss out on the fun! =) She was always the life of the party... what a wonderful woman!!

After 4 heartbreaking, but love-filled days of being in the hospital waiting for Grandma to be with our Lord, I needed to leave. My poor kitty at home was all alone and was quickly running out of food and water. Mercedes was such a wonderful little girl being so quite and patient as we spent all of our time in Grandma's hospital room, but I was missing Mia and knew I needed to get back home. Early the next morning on July 28th, I suddenly woke up the minute Grandma passed away, then instantly, I received the text from my sister, who was there in the hospital with about 11 other family members saying that Grandma went home to be with the Lord. What a joy it was to know she wasn't suffering anymore, yet so incredibly hard to know that I'll never see my precious Grandma here on earth again.

Her funeral was amazing. Not a lie needed to be said to make Grandma sound good - Grandma was the most amazing Godly woman! What a legacy she left us - we miss her so much! Majority of her 21 grandkids and some great grandkids sang a favorite song of hers - What a Day That Will Be

Robert:
Apparently Robert's Field Training went really well in Alabama and Mississippi. He was away just over 5 weeks and I'm sure he was VERY ready to get out of that miserable humidity!! It's nice to have him back home!

He's also finally no longer at Sacramento State University and is now working at the ROTC program at San Jose State University which he graduated from in 2005. This week is his official first week there and already it's so much better. Just knowing that we'll be living together as a family - and only 2 minutes away from Mia - is a huge blessing! It's something we haven't had in about 18 months. It's definitely going to take some getting used to - we've been married, but not living together and making decisions together. Keep us in prayer as we get used to this again!

Rachael:
I've been doing pretty well - thankfully not nearly as stressed out especially this past week because Robert MADE us finally unpack the last of everything, so the house is a home now. =) That's made a huge difference for both of us. (And I'm updating the blog!) We're starting to exercise again, which is wonderful. (He always does, but now we're doing something together!) All this week we've been getting up at 5:30am and going for a 3-4 mile walk. It's nice actually seeing the sunrise for a change! We get Mercedes all bundled up and wrapped in a blanket and she enjoys snoozing in the stroller.  =) I have another hernia, which isn't really a hernia. Because my abdomen got so big while pregnant with Mia (people would always ask if I was having triplets), my abdominal wall never went back together. I've been scared to work-out, thinking that something really serious might happen, but I figured, you know what? I need to start somewhere. I can't NOT exercise! So... I'm walking for now. =) Hopefully that will help with the ab wall closing in back to normal as well.

One awesome book I'm reading (actually doing a study with my sister, mom and 2 friends) is called The Christian Atheist by Craig Groeschel. "Believing in God, but living as if He doesn't exist." Amazing book!

Mercedes:
Mercedes is doing great! She's totally loving pre-school and wants to do school as much as possible!! We're looking into a curriculum that hopefully we will be purchasing in the next week or so to start our homeschooling experience. Her pre-school only meets on Tuesday mornings, but she's loving it and doing her homework! =) You can pray for her - she has had pain in her teeth for several months and is finally getting them worked on in 2 weeks - September 28th. She needs to have 2 baby root canals done. =(

Mia:
Little Miss Mia is blowing everybody away!!! All of her therapists are always amazed at how much she's improving!!! Respiratory wise, not much has changed, but developmentally, WOW! =) Just today her Speech Therapist was doing her 3 month evaluation and Mia went from being in the 0-2 month category to the 8 month!! A few she "scored" in at the 9 and 10 month categories!! That's HUGE! =) When the teacher asks her to touch her eyes, she does!! When she asks Mia to touch her nose, she does it!! =) She's doing great with her Physical Therapy, too! She's so much more active and rolls from side to side and loves to bend so much that she's looking upside-down! I think she wants to start gymnastics! ;-) She's such a sweet baby!!

Pray for Mia - she has her 3 hour appointment up at Lucile Packard Children's Hospital (Stanford) with about 7 specialists coming up on September 22nd in the morning. She'll be seeing a neurologist, geneticist, cranial facial surgeon, etc... This is a big deal.

Here is a short 1 minute video of Mia from last night. Like her little ponytail? =) She's getting tummy time and was pretty active, although I didn't catch her at her most active. She's moving so much more and is so much stronger!! Praise God!! Thank you for your continued prayers - please keep praying!

Blessed by God,
Rachael for all of us

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

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

My surgery

Oh... I rescheduled my surgery! =) It would have been tomorrow morning, but since Mia is just getting out of the PICU right now, there's no way I was going to be able to keep my appointment. We thought she was going to be back at CRC last Friday and if that were the case I may have kept the appointment.

My surgery is now scheduled for April 29th at 7:30am. =) After coughing a lot this past week, my hernia seems a little worse now, but hopefully it's still small enough that the doc won't need to use any mesh to hold it all together! =/ You can pray for me about this - I've had several surgeries before, but nothing really like this and I'm not looking forward to it. I know it's not going to be anything like the c-section, but just the thought of it doesn't make me eager to have it done! =)

Rachael

Finally - a blog update!

Whenever I have a few minutes, I typically just update using my Facebook status because it's so much faster. But at the same time, I can't be very detailed in a status. =)

Mia is doing a lot better. As of Sunday, the pneumonia is gone, but the infection and other hospital bugs (MSRA and another stronger bug) still remain. On Monday, Dr. Silva came back on his rotation and said he wanted to be a lot more aggressive to get rid of the bugs, so he started her on steroids to help with the inflammation in her lungs, then changed one of her antibiotics from IV to an inhaled treatment to help kill the germs in the trach itself as well as just getting the drug deeper in and throughout her lungs.

Mia has been so perky and happy, but very bored here in the PICU! She definitely loves watching TV, so that's good - at least something is holding her attention! We finally got some snuggle time in yesterday for about an hour!! Wow.. after a week of not holding her, I've discovered something. MIA IS HEAVY!! haha My arm was killing me!! =) Then I went home and held Mercedes - and boy is SHE heavy!! =) I can't believe how big my girls are!

Mia will be going back to CRC today after 5:00pm. I will go over there to pick up an RT so they can either get Mia's settings just right on the different vent, or they will just bag her all the way over to CRC. We learned the first time she was in the PICU for pneumonia on July that AMR can't get her settings just right - and the RT's here at the PICU don't know the vents work that they use at CRC. I asked if they could simply get an RT from CRC who knows those vents inside and out to just take her back, so that's what they ended up doing in July, December and now this time. =) I'm very happy about that!

Mia is definitely ready to go back! It'll be a little different, because this time they are leaving the central line IV in until the remainder of the antibiotic course (up to a few weeks, I think). It'll just be one more tube to keep an eye out for, but all in all, it'll be great to be back "home". I'm so glad our favorite nurses were here taking care of Mia while she's been in the PICU. We love Angela, "little" Donna and Ron! =) We're going to miss them!

Mia did get an MRI done I think it was last Friday. Dr. Silva didn't really have too much to say about it, but he's going to send it to a neurosurgeon at Stanford to get his opinion to see if there will even need to be a course of action. I'm not sure when we'll hear anything back from that.

I think that's about it... I'll leave you with a few videos from the last few days. =)

Thank you so much for praying! Since we'll be leaving the PICU, I won't be able to update the blog or Facebook quite as often as I had been since we don't have internet access at CRC. Hopefully I'll make time when I get home to get on to update, but I know myself - it doesn't happen like I want it to! Updating once a week is a miracle! =)

Yesterday morning:


Yesterday afternoon:

Rachael

More videos from a couple of weeks ago...

Again, (I think) to view these videos, go to the blog web site. =)

March 7th - Mia rolling over!!




March 8th - Mia in The Little Room

Update

Day three in the hospital and Mia is finally resting a little better. She was pretty sleepy Wednesday, the day she was admitted to the PICU, but yesterday she was extremely restless and even with Morphine and Versed, she wouldn't fully go to sleep. They started giving her little doses every hour and finally she was sleeping a little better.

Mia has been diagnosed with pneumonia, strep and MSRA. They found out about MSRA yesterday, so they changed one of the two antibiotics so they'd be more effective.

It's Dr. Smyklo's rotation now (she's actually a doctor who covers at CRC when Dr. Silva is out of town, so she kinda knows Mia, too.) and she was able to get a central line IV (more permanent around the diaper area), so they were able to remove the IV on Mia's hand.

Mia will be having an MRI of her head/brain this afternoon around 3pm, so please be praying for that. I have been very adamant about getting this MRI for a while because the one they've been going off of was taken when she was only 1 day old. I personally want to know if her brain growth has progressed at all. I know developmentally, she's doing SO many new things, but I'm just very curious. Plus, one of the neurologists from Children's Hospital Oakland said she should get another MRI when she's around 12-18 months old and she's almost 13 1/2 months now.

Mia also hasn't had a BM in over 2 days - even with a total of 3 suppositories. I'm sure that's adding to her discomfort. Be praying that she'll stay regular as well. She typically is.

Robert left for Sacramento last night to get some vital work done for the semester. Depending on how Mia is doing (if she continues to slowly improve) he's going to work over the weekend and the regular work week next week, then he has a trip going to Vandenberg AFB near San Luis Obispo, CA, so we might not see him until the 30th or the 3rd depending on if he has to go straight back to work after the trip.

Mia shared the love with me, so now I'm pretty sick. Cold and chest congestion - I can't imagine how she feels especially because, for me, it's taking so much effort to cough it up. She can't take deep breaths to cough it out. Now I know why she got so bad SO fast! It's only been 2 days for me and I feel terrible. Pray that it clears out of me quickly because I'm supposed to be having my hernia surgery next Thursday and we all know I wouldn't want to be coughing after that! My hernia is starting to hurt, though, with all the coughing I have been doing. =/

I couldn't resist taking this picture... it was just too cute to pass up!! Mia was getting a sponge bath and she also got her hair washed... so cute!

I will keep you posted on here every day or so, but Facebook, I'm updating my status every hour or so.

Trusting God,
Rachael

Pictures and video

New pictures on Facebook: http://www.facebook.com/album.php?aid=151861&id=614762171&l=94af1a1e7a

Go to the last page of the album to see the newest pictures.

Here's another video from tonight!

Again, if you're opening this in your email, you may have to go directly to the blog to view it.

Update for our baby girl

Continue praying for baby Mia. Not much has changed since the previous update. They did get an IV started and she is stable to be back on the ventilator now. She's holding her oxygen saturation now at 50% oxygen instead of being fully on oxygen like she was when she was admitted, so that's a great improvement! Please continue praying for her and our family.

Also for me, since Mia gave me what she has, so now I don't feel very good. I can't imagine how she feels since she can't cough very productively.

Her left lung is completely junky and about half of her right lung is bad as well. She's on 2 antibiotics, even though her pneumonia is viral. There was some bacteria found in the sample they got from her trach, so they're hoping the meds will stop anything else from progressing.

It's just going to take time now for her healing - she's still pretty out of it.

I just got a text from Robert saying she just cut in her 6th tooth - on top of all this she's going through! My little lovey! =/

Robert and I spent the night with Mia by her bedside, and I had to leave around 10am because I just wasn't feeling well. It just seems like a cold, but there's already a lot of chest congestion. I'm trying to work hard to keep it from getting too much worse. Robert's going to spend the night with Mia again tonight.

Keep praying!

Rachael <3

Video of Mia from earlier today ...

Update: Dr. Silva came to CRC just before midnight and checked the xray. Her left lung is really bad, and Mia wasn't tolerating being on the vent anymore. She couldn't hold her oxygen levels at all. She was desatting while being bagged with 10 liters of oxygen! She's normally satting anywhere from 97%-100% on just .5 liters. Joe, her night RT had been bagging her for about 2 hours by the time the paramedics and firemen arrived. Mia was requiring an albutertol treatment every hour to keep her co2's down - even then, they would be in the upper 50's, then 20 minutes later, they'd go right back up to the high 70's, as high as mid 90's!!

Even though we'd prefer Mia to stay at CRC, there was nothing else they could do for her. She definitely needed to be moved to the PICU. We arrived here at Good Sam just after midnight. Thankfully we only had to be in the ER for about 20 minutes before heading up to the PICU.

They finally have her stable on the vent here, but on 100% oxygen and she's satting low on that (90%).

Be praying - she's really not looking good this time. We just found out yesterday morning she has pneumonia and I'm surprised at how quickly she's taken a turn for the worse.

Enjoy the cute video below from around noon this afternoon (or yesterday? Tuesday.) =)

I'll update as often as I can, primarily on Facebook, though, so if you have it, add me or keep checking my page.

Serving an awesome God,
Rachael <3

If you have are opening this in your email, go to the blog site to view the video.

Mia's Sick

It looks like Mia is going through another round of pneumonia. She started having symptoms over the weekend but over the last two days it has gotten progressively worse. They have had to raise her ventilator settings very high and they still aren't having much luck in controlling her CO2 and O2 levels. Rachael has been at the CRC all day, I came up to Sacramento for work this week. Unless things take a real turn for the worse I will stay here for the time being so Rachael will be dealing with this on her own.

Rachael and I have talked and we asked the CRC staff that unless absolutely necessary that they not take Mia to Good Sam's this time. Although she has received excellent care when she is there we always end up with a loss of continuity / familiarity with the nurses and RT people. At the CRC Mia is with people that are familiar with her and RT's that are just a couple of steps away at any given time. It will be Dr. Silvas call on this but we are praying that he will wait it out.

Finally, Michele and Joe are the nurse and RT respectively for Mia tonight. We are very happy to have them as they are excellent at what they do and they really care the best for Mia.

Thanks again for all of your prayers and support. If you want more updates please look at Rachael's facebook page. That is where she is posting updates as anything significant happens.

http://www.facebook.com/rachaeladamis?ref=profile

It worked!!

Last time I tried that, it didn't work, so I'm glad it's working now!! (Or that I finally did it correctly!)

This video was taken last Saturday (she got sick a few hours later). She's rolling to her side now!! =) Enjoy it!!

In case you're wondering, she's on her Resonance board. Any movement made on it is basically amplified to work on her hearing! They get so much feedback from their movements that it encourages them to make more! =) It's a tool given to her by her "Blind Babies" teacher. Blind Babies started soo long ago and their name seems like they're limited to just visually-impaired children, but they help with all the senses. Mia really seems to like her board. =) She becomes a lot more active when she's on it - it's cute! =)

Mia's doing a lot better. She still has a few loose stools here and there, but she's so much better. She's back to 100% formula, though she's getting it continuously. They tried to do a normal feeding (90ml) over an hour, but her tummy still wasn't quite ready. Maybe tomorrow?

Her Co2's have been really good. Jay weaned her down to 23bpm today, so she's making progress!! She continues to be a chatter box, which is GREAT, because when she's talking, she's breathing on her OWN - breathing above the vent!! =)

Mercedes, Willow and I drove up to Sacramento this afternoon and had a beautiful drive! We only had about 5 minutes of heavy rain, so it wasn't too bad! Thankfully that was right outside of Sacramento.

When we got home, Cedes and I had a snack on my bed and she wanted to feed me chocolate chips (since she can't have them due to her allergies), so she gave me the last few. I had already eaten some cashews that were in the baggie, but I didn't really think much of it. When Robert came home, he was with Cedes and he called me and asked me to come over to them. I heard the urgency in his voice, and when I saw Cedes, I was shocked!!! I said "What happened?!" She said she poked her eye -- then it dawned on me. She touched the chocolate chips that had been touching the nuts... the residue was on her fingers, and she touched her eye. Within 15 minutes, her eye was almost swollen shut!!

I rushed to the store to buy some Benedryl and now, about 4 hours later, she eye is almost back to normal. Hopefully tomorrow she'll look normal again!! We learned our lesson!




To view more pictures, click here --------> Random Pics
and here -----------> Mercedes' Photography (and of her eye)
and here -----------> Mobile Uploads

I'll try to keep everybody up to date with our lives - our very busy and too-tired-to-go-online lives! =)

Blessings to you all,
Rachael

Trying this out...

Praise God!!

Hi All,

I woke up to a phone call from Mia's night shift nurse yesterday morning saying that Mia had 1 bad diaper on the pm shift and 3 on her shift. I called the morning nurse before we left for church she said Mia had another two bad diapers on her shift already. Thankfully, her Co2 was pretty good!

After church, I called again, and Mia's nurse answered the phone. When I said who I was, she sighed really deeply and said "Oh thank God - I needed to call you." I wanted to know what happened!!! Just 10 minutes before I called, the nurse walked in to check on Mia and she said Mia was beet red and sweating, so they took her temp and it was 102.5!!!! =( My poor baby! They have her Motrin right away, then the CNA gave her a bath, put a cool dress on her and kept a cool towel on Mia's forehead. When I got to Mia's about an hour later, I prayed over her and when they checked her temp again, it had gone down to 100.0, then about an hour later, it went up to 100.4, so they piggy backed her with Tylenol. I kept praying over my baby and thankfully she was wide away the entire time I was with her! That was really special for me. =)

Being that it was Rotavirus, they highly encouraged us not to let Mercedes come visit, so Robert dropped me off at Mia's after church and he spent time with Cedes for the afternoon. It was just me and Mia in the room laying on the floor spending time together - occasionally watching Sprout (a cute TV station kind of like PBS), but mostly just looking at each other and talking and praying. =) She dozed off just once for about 2 minutes, but she was just so wide awake - which was wonderful!!

One HUGE accomplishment that Mia did yesterday (for the first time that I've seen) is she FINALLY got her thumb in her mouth!!! She's never been able to open her mouth wide enough to get her fingers in, but she's doing it now!! I've noticed that her tongue is also getting a lot stronger. It used to be so skinny and tiny, but she's working it more and it's getting fatter - like a normal looking tongue!! I'm so proud of her!!

Keep praying for her entire body - but one main thing is that her jaw will loosen up so she can one day use it to eat, etc. Especially since she's getting more teeth - having room for them to grow in would be very nice!!

I just called a bit ago to see how Mia's doing and her temps have been 97.? since around 9pm last night, no more loose stools since 4pm yesterday (she had about 9 in 12 hours). Mia's Co2's have been in the low 30's to 40's, so hopefully they can start weaning her back to her rate of 22bpm - they had to raise it to 26bpm Friday night.

Keep praying!

Christina and Kenny - thank you for the outfit you sent to Mia about a year ago - she's wearing one of the dresses in the picture above for the very first time!! It's adorable! =)

Rachael <3

Confirmed...

Hi All,

For those of you who saw my Facebook status this morning, you know that Mia has had a tough 27 hours.

My status: "Please pray for Mia - she had a desat episode yesterday while i was holding her and they got her on the floor and bagged her and worked with her for a few minutes. After that, her heart rate was 170 and her soft spot was bulging. Checked Co2 and was way high at 64. Increased breath rate to 26 to help blow it off but still high at 50. Keep her in prayer! :( "

Update from today:

Her vent breath rate setting is still at 26bpm (she was at 22bpm), so they raised it by 4 breaths to help blow off the Co2. Her secretions have been really thick (suctioning her trach) and she's been coughing a bit more. So far no fevers, which is great, but she did have a very messy and smelly diaper this evening. Several of the kids at CRC are in isolation (can't come out of their rooms and parents and staff who work with those children have to gown up and wear gloves and masks). It's been confirmed that CRC has been hit with Rotavirus, so please be praying!!!

About this time last year, they had a bout of Rotavirus and the kids had to stay in isolation for 3 weeks. Majority of the staff were all sick with it, too, so please keep the kids, staff and families in prayer!

Mia has not been diagnosed with it, since she's only had that one bad diaper, but I will keep you posted.

She's just as beautiful as ever and our family (Me, Robert, Mercedes and Mia) were all able to rest together on the floor! That was fun. =)

God bless you all!

Rachael <3