February 11, 2010

This has been a terrible, horrible, no good, very bad day. Usually when I say that I can laugh and feel better about whatever mess or mishap my day has been. But not today. And the last two years this day has been a day that we party just as hard as we do on Christmas, because this is the day three years ago our family watched as miracle upon miracle played out. But this year, we sat in a hospital room agonizing over how sick our little girl is. We just want her well! But I must say we are thankful for so many reasons. We are thankful for all the wonderful physicians who are collaborating on our daughter's behalf to help solve this puzzle. We are ever so thankful for for our family. Honestly Tory and I are so grateful that Toby and Tammy and their two wonderful munchkins live so close. Just being around them can helps make us feel better. And we are also extremely thankful for some very wonderful friends. Now we pray that whatever is making her so sick becomes known, so we can treat it, so we can be home together as a family.

Now here are some pictures of our day.

The "additional" machinery we are no dealing with, all in the name of getting Michelle better. (At least this is still nothing compared to what she was hooked up to three years ago though.)

The special machine that connects to a special vest she has to put on every four hours that helps to loosen up any "gunk" in her lungs. We call it the "Shakey Shakey."

"Shakey Shakey's" vest.

And last of all, where Michelle has spent most of her day. This picture breaks my heart all over again. Get better quick Baby Girl!

Our Marvelous Michelle

Sorry, no pictures. And this is not really that happy of post either.

Michelle and Ryker have spent most of this winter with either a cold, ear infection, or pneumonia. And especially poor Michelle has just gotten worse with each episode. For those of you who have followed our blog the past two years know that Feb. 9-11 is a major turning point for our family. And yesterday, Feb. 9, 2010, was the 3 year anniversary from when Tory and I got the phone call that changed everything. That is why when Michelle became even sicker yesteday, I about lost it. We saw our pediatrician, which we have been visiting on a regular basis lately, and discussed all our concerns. I of course immediately thought about her heart. We ended up having to go in and see her Cardiologist pronto, and thankfully, her little heart looked good. But why is she still sick and continually getting sicker?

This morning our pediatrician started asking around and decided with how things were going that it would most beneficial to just have Michelle in the hospital. This was a very wise decision because she had become so sick, since even this morning, that just taking her off the ventilator to get her into the car was too much for her, definitely a huge change for her. Here we are celebrating the anniversary of her miraculous heart with her being very sick and in the hospital. Thankfully we have been extremely blessed with such a loving family that immediately comes to our rescue every time and a very amazing group of friends who also rushes to our aid without us even asking. We are truly watched over.

So right now, as I try to write this through all my tears, I will tell you that all we pray for is for our Marvelous Michelle to be made well again and to have our little family all together in our little home. Nothing else truly matters.

The Most Wonderful Time of the Year (To Us at Least)

As we have said in years past. We love the month of February. Many very important things for our family have happened during this month. And so we begin our Celebrations!
Ryker and I were invited to a Valentine Exchange. So with my crazy stampin' mommy, I made the Valentines Ryker and I gave out.

My card in the end.

Then I decided we had better make one for the most important man in our lives, Daddy!

Ryker after getting home. Typical boy, having to check out "the haul."

I, of course, was more patient and waited for Mommy to take the all important picture.

Mommy finally getting a picture of Ryker with his special decorated Valentines bag. Blue and Orange of course.

Being a typical girl and slowly pulling each one out and examining them very meticulously.
Here is a picture of all the Valentines we received. (I was espcially happy to get two princess Valentines, they are sooooo fancy.)

I probably shouldn't say anything, but Ryker even gave me a Valentine. We may be siblings, but we do love each other.

Having to test out some of my "loot." I am so thankful for therapy, the world has opened up to me.

And just in case anyone wanted to try some of our treats, her is Ryker being the gentleman that he is, and offering you a lick of this tasty morsel.

Learning to Budget

Trying to be a frugal family, this is where we go:

Understanding Finance

Mom Advice

A Thrifty Mom

Discount Queens

Fabulessly Frugal

Krazy Coupon Lady

Pinching Your Pennies

Educational

Now in one spot some places I like to gather ideas from:

• LakeShore
• Sonlight
• TimberDoodle
• Rainbow Resource Center
• PBS Parents
• PBS Kids
• Do 2 Learn
• Thinking Preschool
• The Home Teacher
• Preschool Playbook
• No Time For Flashcards
• Our Preschool Homeschool Blog
• BYU Free Independent Study Courses

I Wanna Be Like You

I am definitely my Daddy's buckaroo, and I can't wait to be just like him.

Gift Wrapping Galore!

So Mommy always says that Michelle and I are the best gifts she has ever received.

So I thought, if I am a gift, might as well wrap myself up.

Art in the Tub

My nurse missed Ryker and I a lot while we were away. So she had a welcome home gift for us today. Bathtub Fingerpaint.
Just having to feel the gooeyness.

Ryker in his blue era.

These are the super cool squeezey bootles. And of course Sesame Street just makes it that much cooler.

And our lovely work of art. The best part, everyday we can make a new piece of art and there is no residual mess for Mommy to complain about.

Snowed In

We were on our way home yesterday, and things were going okay. I fell asleep, so that was good. Ryker screaming for 4 hours and driving our parents bananas, not so good. (But remember the poor boy is teething molars, still, and probably getting sick since he has been hanging around me and we are so good at sharing pneumonia.) Anyway, we were just over half way home when my wonderful and lovely young aunt who was watching the weather for us all day saw that there had been a major snow storm that had dumped 9 inches of snow in mountain pass we were supposed to drive through leaving the roads slushy. Not a problem except the sun was going down and the cloud cover was moving on. Anyone have any idea what that means . . . icy, scarey, mountain pass roads. So we stopped at the city at the base of the pass and got a hotel room to camp out the night. The next morning started off spectacular. Ryker got lots of motrin and tylenol to get the pain under control and the Sun rose with all its might. Driving the pas the next day was fantastic, as Mommy put it, "The forest is so Narnian." Well we tried to take some pictures from the car of the trees and mountains and sky. What a marvelous sight.

The trip was wonderful, and an extra night in a hotel was rather fun. But I will say, Ryker and I are really excited to sleep in our bed tonight.

Day Two of Seattle

Even though this is a trip to go visit some good doctors, that does not mean that we can't go see the sights.

We started the day at the Space Needle to catch the monorail.

Where did we go . . . Pike Street of course. Flying Fish and All.

It is quite the amazing open market.

And this Homemade Cheese. So COOL.

And it just wouldn't be Seattle without a bunch of these. The Hot Chocolate and Caramel Apple Spice were calling to Mommy.

Me and my cousin. We prove that our parents have some serious good looking genes.

And then there is this little snookum, again proving it.

Even with all that testosterone, little Ryker is super good looking.

The whole family at the waterfront.

And it wouldn't it be a trip to Pacific Northwest without some fresh salmon and chips?

Or delicious Clam Chowder.

Then, we girls, found this amazing discovery. A carousel!

Riding a Pony! A dream come true.

And the whole family at the top of the Space Needle at the end of a wonderful day of sightseeing. That evening we had an early birthday for my awesome cousin. What a great day!

Day One of Seattle

Today was Day One of Seattle. We had amazing plans for after the appointments. We were going to the Children's Museum, and the Science Center (that is what you get when your parents meet in Microbiology sitting in one of the first 3 rows, super science geeks) and the Music Experience (and that is the super science geeks pretending to be well rounded). Well we made it there (thank you GPS Navigator) and when my parents got out of the car to get their sweet munchkins, guess what they found. Two sleeping munchkins. Yep, being sick and getting very little sleep the two previous nights (sleeping in the car doesn't count either) we were very very very tired. So back to the hotel we went, and guess what happened then. Mommy and Daddy fell asleep too. I guess that is what happens when two cute munchkins keep them up two nights in row and then stress them out with things like pneumonia. Anyways, we all took a long nap and boy did it feel good. So when we all woke up that afternoon, it was too late to do our previous plans. So we improvised. We went to a little outdoor mall close to our hotel and just walked around. For dinner we decided to go all out and eat at Johnny Rockets. Daddy even picked out a song for Mommy on the jukebox. Isn't he such a romantic.
Here I am in my Johnny Rockets Hat. It was so cool I decided to pass it around.

Ryker pretending to be shy.

Mommy being super cheesey.

Daddy being all cool

And me showing off my amazing straw sucking abilities. Thank you therapy!

Well Day One has been a success and tonight my cousins are coming. Day Two, here we come.

Oh and by the way, this is the view from our hotel room. So beautiful!

Seattle Childrens Hospital

We made it! All those grown ups worked very hard and I slept a lot while in the car yesterday so that we could meet some very important specialists .We met a pediatric pulmonologist and a pediatric orthopedic surgeon who specializes even further in hands and forearms. Both gave us very good news. First of all, Daddy and Mommy are not crazy! (Phew, we were seriously beginning to wonder.) A lot of things that they have been feeling and thinking these doctors confirmed. First of all, the ventilator I am on right now, is not what is keeping my trach in. And there are a lot of steps to getting decannulated (having the tube taking out of trache), but decannulation is in my future. Now on to the hand specialist. NO surgery! Hooray! He discussed the importance of function over appearance and how if Mommy and Daddy will help me and work with me that I can learn to use my hands the best way for me. Well, I guess I should say go back and say, no surgeries for now. We will keep following up with him and things might change, but at least for right now he thinks I am learning to use my hands just fine.

With a Capital P

Our parents have really been trying hard to teach us to share in this family. Next time they teach us something like that, they need to be more specific. Instead of, "Michelle and Ryker, you are brother and sister and you are only 2 years apart in age. You need to learn to share your things." They should have said something like, " . . . You need to learn to share your toys, and books, and snacks, and mommy and daddy's laps." That would have been better. Now many of you may be wondering why we think they should have clarified. That is because we have been doing a very good job of sharing. Sharing things like Pneumonia. Yep, we have been very good at sharing that this winter. It all started with the episode after Thanksgiving, then poor little Ryker got it just before New Years. And today (the day before we leave for our trip to Seattle) I wake up with a nasty fever, cough, and being unable to keep anything down. My wonderful Daddy and Mommy of course called the Doctor (who also wants us to make the trip to Seattle to see some very important specialist) to figure things out. Well, after have a very unpleasant urine sample, multiple blood tests, chest x-ray, and abdominal x-ray I got myself a great big shot of a antibiotic and an oral regimen of antibiotics and Tamiflu. We sure hope that tonight I sleep well and tomorrow we get to go.

And for all you crazy science geeks out there (aka mommy's family) here are some pictures of pneumonia we got from the Mayo Clinc's website.

Therapy Update!

So a little while ago I told you all how I had conquered swallowing. But one goal met, means we must keep moving forward to the next one. I have now figured out taking small sips from a syringe (not the kind with the needle of course, but the kind you use for things like baby tylenol and ibuprofen.) It was a big step, but bigger steps were to come.


THE STRAW!

Here I am with that magical straw. Oh, and that glove is also very necessary straw sucking equipment. Don't believe me. Then why does my therapist always wear one whenever we are practicing drinking? Thats what I thought.

Filling and drinking from that syringe is serious work here. Concentration is very important.

All in all . . . I am pretty excited about this achievement. I am thinking though, if I can handle water up a straw, is a milkshake the next step? Hmmmmm . . .

Clean Up, Clean Up, Everybody Do Your Share

I have recently discovered an amazing toy that my parents have been keeping from me. They act like it is so dreadful, and boring, and cumbersome. But I have learned to see through their facades and therefore have many great wonders they had been witholding from me. What is this new found wonder . . . VACUUMING!

Truly an activity of pure leisure.

Late Christmas Present or Maybe a New Years Resolution

So the week of Christmas, Daddy, Mommy, and I decided to give each other a different kind of present. She would give me panties (way cooler than diapers) and I would try so very hard to go potty like a big girl. Well, we officially started Dec. 21 and I am on day three without accidents. We have even left the house a few times without a pull-up and I held it! I am sure a whole new avenue of fashion will open up now.

(Disclaimer: The above picture is just cute me and was taken the day after we discussed the plan. Sorry, no pictures of me on the potty or with me in my wonderwoman panties, this is the world wide web you know.)