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

We're all alive! =)

Sorry to not have updated in a while - we're all doing fine!! Just the typical busy days. I did, however, add pictures to my facebook album of Mia's birthday party from February 13th! To those of you who came, thank you so much!! It was nice to see everybody - and even have several meet Mia for the very first time!! =) You can view those pictures here: http://www.facebook.com/album.php?aid=153138&id=614762171&l=2ddf62981c (They will look like all the same pictures since it's the same album I've been showing, but just go to the next pages and you'll see the new ones.) =)

I haven't really mentioned myself lately - I've been doing great, but you'll see in the pictures that's I've chopped my hair off!! While Mercedes and I were in Sacramento last, we took a drive up to Chico so I could get my hair done and it was a great excuse for Mercedes to spend time with her Grandma at her house for a change, and also to see her Great-Grandpa!

I also saw another allergist about a month ago (I hadn't been tested since being in Vegas about 2 years ago.). This testing wasn't so great - they pricked my back around 96 times, then weren't sure about 8 of them, then used needles to do 8 further testings on my arm. The back testing was only itchy, didn't hurt, though. The arm testing was a tad painful because they had to use needles. Turns out I'm allergic to quite a bit of things - just very mildly. Aside from trees, grasses, weeds, molds, dust, etc, that I knew I was allergic to, I'm allergic to dogs, cats, horses, rabbits, hamsters and cockroaches. I'm soo bummed I can't have a pet cockroach now!! ;-) I knew I was allergic to cats when I got my Willow, but I didn't care. =) I figured I was miserable anyway, what was another allergy going to add? =)

I began allergy shots 4 weeks ago and different allergy and asthma meds (now I have only 1 inhaler that I forget to take instead of 2. haha) I've actually been better at remembering to take the medicine and I'm not sure why, but even a few days before I saw the allergist, I was finally able to smell things again! The majority of the last 5 years I haven't been able to smell - I could smell during the pregnancies, then right after my sinus surgeries, but then it'd go away for usually like 8 months at a time. I was able to smell for about 2 months, then I got a cold in November and it went away again. I'm so glad I can smell again!! I hope it keeps up - although it is a blessing and a curse at times!! There are a a LOT of bad smells in this world, but it's great to be able to smell sweet things - like when I'm cuddling with my girls and they're so nice and clean and Mia just smells beautiful like Mia and Mercedes smells wonderful like Mercedes!! =)

Another thing that I'd love prayer for is an upcoming surgery. I need to have an umbilical hernia repaired. I knew I had one - I noticed it when I was about 6 months pregnant with Mia. As you know, I got HUGE with Mia, but thankfully, the hernia didn't grow too much. The doctor says it will be a quick 30 minute surgery and it won't require any mesh. He says the repair shouldn't tear with any other pregnancies, if that time comes. My surgery date is March 25th.

Mia is doing pretty good - they're weaning her vent settings down a little bit. Her Co2 is a little higher than is typical for her, but it's still considered in the normal range. She's been really sleepy lately, so I don't know if maybe it could be the weather, or maybe it's just that the Co2 is a bit higher. Continue to pray for her!

I need to get ready to see my baby now. =)

If you know you're on the guest list to visit Mia (as of last summer), you're able to visit again! Mia can have two visitors (+ Mommy and Daddy), so come visit! I think visiting hours are basically from about 11am until 8pm. Let me know ahead of time - I'd love to visit with you, too!! =)

God bless you all,
Rachael <3

Update from Mia's ear surgery...

Hi Everybody,

Thank you so much for praying!! =)

It was a great 1st birthday for Mia surrounded by family and our dear friend Victoria (whose daughter is also at CRC) praying for Mia at 1:02pm. =) Thank you for joining us from where you were!

This is a short update because I have to leave in a few minutes for Mia's appointment with the Blind Babies teacher. No, she's not blind. =) Her vision is perfect, actually! But this teacher is to help Mia strengthen her eyes, as well as develop her other senses. =) Mariah is wonderful! =)

Mia's surgery was a little different than we expected. We got to Lucile S. Packard Children's Hospital (at Stanford) a tad late, but she was good to go in for surgery on time - or so we thought. The patients' surgeries before Mia took longer than expected, then there was an emergency surgery when Mia was supposed to go in, so instead of going in at 11am, she finally got wheeled away at 3:45pm. I didn't mind the waiting, but I felt terrible for my baby because she hadn't eaten anything since around 5 or 6am!! =(

We found out that Mia couldn't get the hearing test done after all because of a new policy that went into effect a month or two ago. The only way the audiologist will do it is when patients are off of trachs.

The surgery was super short - only about 45 minutes! The doctor came in to tell us how she did and what his findings were when he looked down her trach and during the Bronchoscopy and also looked down her throat with another scope. The good news is that there was a great deal of fluid in Mia's ears, but the tubes went in smoothly and everything is draining. The not so good news is that during the Bronch, it was noted that Mia will need the trach (as it looks right now). Something wrong with her airway - I can't remember exactly. It'll all kind of a blur. =) Mia's vocal cords are also paralyzed, which was sad to hear. Of course, this doesn't mean she's going to stay that way! We just need to be faithful and pray!!

Another bit of sad news is that it appears that Mia's jaw joints are fused shut. The ENT says that he highly recommends Mia seeing a Neurologist and getting an MRI (which I just mentioned to Dr. Silva last week regarding both). The ENT thinks it'd be good to know what would be expected of Mia of she'll need to open her mouth, because if not, then it wouldn't be worth putting her through that torture of multiple jaw surgeries. And surgeries won't even be considered until Mia is about 4 years old anyway.

In the meantime, we are going to continue massaging Mia's jaw and face, and pray, and we'll see what God will do!! =)

Please keep praying for this amazing little girl - she's so precious!!!

I actually added pictures from Mia's birthday and surgery - can you believe it???

Mia's 1st Birthday/Surgery Photo Album

Pray for Cedes, Willow and I as we drive up to Sacramento for the week - we come back on Friday evening. =)

Enjoy,
Rachael <3

HAPPY 1ST BIRTHDAY TO MIA!! Specific prayer requests...

Happy 1st birthday to our precious little Mia Amore!!

I can't believe how big she is.... Mom and I measured her yesterday and she's grown almost 10 inches and has gained about 12 pounds since birth!!

She's developing great and it's so cute to see her pray with her little Seahorse, her Slinky and her little Beanie Baby skunk called Skunkers. When I lean over her when she's in bed, she loves getting her fingers caught in my bangs - it's so cute!! I'm keeping my bangs long so she can do that!! She's really reaching for things now - toys hanging from her toy bar, people's faces, she loves admiring her hands and grabbing her nose. =)

Mia kept losing weight, so last week they increased her calorie intake and she STILL lost weight!! She's getting so much more active, so I think she's burning her calories quickly - which is wonderful! Hopefully they'll increase her calories again.

Normally, when she gets her blood drawn (which is on average 3 -5 times a month) she just lays there. One of the charge nurses who is a pro at getting Mia's vein without having to poke around to find it was telling me the other day that Mia is now kicking her legs pretty hard fighting because of the discomfort and pain!!! With any other child, it's not a big deal because they do that anyway, but with Mia, we are SOOO happy that she's strong enough to fight now!!

Everybody has noticed (even Dr. Silva!!) that Mia is so much more active, which is making her so much stronger! All of her moves are no longer just floppy movements - they are so precise and purposeful. Everything she touches is for a reason; whenever she moves her head, it's for a reason - I love it!!

I'll need to add a TON of pictures both on a blog and on Facebook because I am soo behind and there are so many cute pictures and videos!! I really wish they had an internet connection at CRC that families could use - I could probably blog at least every other day give all the amazing updates for Mia!

God is good, though this is very challenging, He never fails us!

Please keep Mia in your prayers, as always, but especially today at 1:02pm as we will be praying over her.


Here are some specific prayer requests for Mia:

1. Healing of/from: brain abnormalities
2. Low muscle tone
3. Strength in her lungs
4. Seizures (seems like she's having some small ones again)
5. Tight jaw
6. Not being able to swallow consistently at all

Some others are:

1. Her physical therapy/occupational therapy/developmental therapy
2. Beginning to taste other things (She tasted her first Gummy Worm!)

Thank you so much for praying for us!

We love you all dearly - thank you so much for your support!

In His love,
Rachael for Robert, Mercedes and Mia