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