First Day of 2009-2010 School Year!

This little goofball says "I had a rotten day." Then her big sister whispers to Daddy that on the bus she said she had a GREAT day!

And this gorgeous one (who was very worried about 4th grade homework) told me "Mom, my teacher thinks learning should be FUN!"

Off to a good start....but, this one was none too happy that her big sisters were getting on that big yellow bus without HER!

Note how in her disgust at the situation she has pulled her shirt up and through her car seat straps - Oh Avery!

Look at them!

Not only are there 5 amazing little girls in these 2 photos, but there are 2 that are miracles of modern medicine. They have fought hard and look at them now! Kids are so amazing in many ways, but Annika & Shelby (especially Annika) have endured more medically than 10 of us will ever face in a life time. Just wanted to share my joy when I look at these pictures.

Now I'm off to find older ones that I can scan on my computer. We have known the Tiede's since the year Shelby was born. Moreena (other than my parents) was the first one to pop her head in Shelby's hospital room when she had her Kasai.

Riley, Annika, Shelby & Frankie July 2008

Riley, Annika, Shelby, Frankie AND Avery July 2009

Make A Wish update

I realized that I left you all hanging about Shelby's wish - sorry! The wish makers came and Shelby was a bit overwhelmed. Just so many things to choose from! But, as the day went on she picked a Disney trip. Now its just up to us parents to pick out some days so they can plan the trip. She's pretty psyched - Riley, too.

Speaking of Riley, her fever went up to 104 Monday night. I took her to the Pediatrician's yesterday and he said it was *just* viral. Her throat is hurting a bit and she's developing some chest congestion, but her ear is feeling better because it really was swimmer's ear (not an ear infection). As of this morning her fever is still 101. Poor kid! I have her in "isolation" in our bedroom and she's pretty stir crazy, but I cannot expose Baby A or my o-so-medically-complicated Shelbelle to these germs. Riley and Shelby are not doing well flipping roles. Riley is not used to and does not like being the sick one and Shelby does not like having to stay away from her Riley - she is ssssoooo bored (if you ask her). Please send some prayers my Riley's way that she gets better soon. What a rotten way to spend your last week of summer vacation.

Aren't we going to a "Children's" hospital?!?!?!?

Really, this is NOT a post to give Children's Memorial a bad name, but rather my venting over some personnel there that need a BIG reminder of where they are employed. Shelby's PFT technicians sucked. I'm sorry, that's the nicest word I could use. No PFT's do not hurt. But, they are new to Shelby and she likes to ask questions until she feels comfortable to move on. I usually have a pretty good sense of when the questions are real concerns of hers and when they are just time-killers so I moderate. Today, though, there wasn't a chance for that and I didn't argue it with these people because they just didn't get it in the first place. Instead I went above them and complained. I made sure my point got across. I mean, come on, you don't say to a kid "save your tears for something that really matters." Really. Those exact words were used. I couldn't get her out of that lab fast enough. Or, "We have 5-year-olds that can do this. You're 7 so you should be able to. Come on." Yup, very sucky experience. When we left there I told her that I knew she did the best she could and I did not like or approve of some of the things that those people said to her. When I voiced my complaint I did it right in front of her to remind her that she did nothing wrong. Adults! ARGH!

Anyway, enough venting. Then we headed up to clinic and met Dr. Lestrude, the Pulmonologist, who is a combination of Jimmy Buffet with shorter hair and Paul Simon. I think that's become a game for Scott and me. We think that Lou Pinella its a combination of Dr. Superina and Dr. Whitington. I digress...so Dr. Lestrude said "blah, blah, medical jargon..." really interesting to me, but boring for you guys. Exercise 02 sats were not done due to a scheduling mishap, but Dr. Lestrude would rather Shelby have a stress test done. Hopefully that will be scheduled for September 1st when we are there for liver clinic.

We swung by the fancy-schmancy new Whole Foods on the way home and got Shelby some "Parmesan" that passed her taste buds approval when we ate supper at the Macaroni Grill. Riley & Avery went today, too, because this Mommy has been away from them way tooo much lately and didn't want to spend another day away from them. Avery was fantastic and took a super-great nap in BOB pretty much the entire time we were at CMH. Riley became increasingly quiet as the day wore on. She is already battling a sore swimmer's ear, but has now developed a fever of 101.6. She is now sleeping next to me. Poor kid!

Well, that's all for today folks!

Adding a new doc tomorrow

Tomorrow we head to Chicago (again) for more testing and to meet up with a new doctor. Shelby will have PFT's (pulmonary function testing) and see a Pulmonologist. This was all planned before the HPS was discovered, but an exercise 02 saturation test will now be done because of the new diagnosis. I will update more after her appointment. Please pray that nothing "new" is discovered and that her oxygen saturation level is GREAT. Thanks!

My Yin and My Yang

Now please don't read this and say "What about her 3rd daughter?" This is my reflection on my 2 older daughter's personalities and relationships.

So, Scott and Shelby are on their way home from Six Flags Great America. Yesterday he spent all day there with Riley only to have a "lost" car keys snafu at closing time (10 p.m.) that kept them there until 11:45 p.m. The key did drop out of Scott's pocket, but instead of it being turned in to the lost and found, the security guard had it. All's well that ends well, right? But, it made for a lllooonnnggg evening. Anyway, since I am still helping all our belongings find their new home since we moved, I ran across a paper describing the meaning of Yin-Yang. I read it and Riley and Shelby popped in my head. Totally. I mean, I've said it for a long time, but they either love or hate (not really, you know what I mean) each other. What quality one lacks, the other posesses. One has a talent, but the other wants it. One has straight hair and the other has curly hair. And they both want the opposite. It cracks me up because when we brought Shelby home from the hospital (when she was born; I know their are *several* times we've brought her home from the hospital) all I could say was that I had Riley's twin. They seemed so much alike to me. In pictures they don't look that way, but that's what my eyes saw. My Grandma was the one who said "Just you wait. They'll be different." Oh my gosh are they ever! Its amazing how they have been raised in the same home, same parents, but can have such different takes on life. I won't comment on who has some more favorable qualities over the other, or which one is talented, etc. That's not what this is about. Its about the Yin-Yang. "The outer black circle represents "everything," while the black and white shapes within the circle represent the interaction of two energies, called "yin" (black) and "yang" (white), which causes everything to happen. The shape of the yin and yang sections of the symbol, actually gives you a sense of the continual movement of these two energies." I wish I could state it eloquently and profoundly of what this symbol means to me when I look at Riley and Shelby, but I just cannot. I've tried. Hopefully, you parents out there get what I'm saying. It just amazes me.

On the way to Great America

What have we been up to?

Well, we've been trying to make this week our "summer." Scott is done with his Math class (which he aced again with an "A") and we thought no one had camp. That is until Monday morning I got a call from Camp Winnebago wondering where Shelby was. Oops! My bad. She went for the rest of the day, but had no interest in going today. I think she's done with camp for the summer. Turns out that works out well because the girls each have tickets to Six Flags Great America that they earned through reading this past school year. They a have to be used by Sunday so Shelby bailing on camp makes it a bit easier for Scott to get his individual trips in with them. Yes, they each get a special Daddy day. Yea for Twickets!

Saturday night we went to a local festival so the big girls could ride the spin-til-you-puke rides in the dark. (The lights make them extra cool.) Avery just hung out in B.O.B. like the good little girl she is. The girls had a great time!

Festa

Magic Waters

On Sunday we took advantage of the nice weather and spent the entire day at Magic Waters, once again using tickets that the girls earned. Mommy pooped out as she is trying to not consume so much caffeine (and napped a bit) by late afternoon, but everyone else was going strong.

Avery is so funny. I just have to share a few things she did today. She went and hid in her sisters' bed and yelled "Liley! Sheshell! I hiding" then waited for them to come find her. Then, just before supper she found an old winter hat of Scott's that his Dad got him when he was working on the pipeline in Alaska. She wanted it on so I put it on her and she said "Bye, I going to the snow!" We had to convince her there was no snow outside and she was quite disappointed. Her words are really coming now and she is just too funny! Man, we all have so much fun with her!

On the Make A Wish front - the wish granters are coming Saturday morning. How exciting! I think we're going to tell Shelby that she's getting a wish on Friday. I plan on taking video and sharing...watch for news!

This and that

This will just be some odds and ends and ramblings, but things that I wanted to share. First of all, if you could pray for Scott's Dad that would be very much appreciated. This morning he had surgery on his carotid artery. All went well with the surgery, but post-op his blood pressure took a nosedive so they are watching him very carefully in the Cardiac ICU tonight.

Second, I wanted to you all to see what little fish we have. Enjoy!

Swimming Fun 2009

Third...and this one's big, but we have NOT told Shelby (or Riley) yet so mum's the word...Shelby is being granted a wish through Make a Wish!!!! I should be hearing from the wish granters soon to set up their visit!!! She sssooo deserves this (Riley, too). We are so excited! Shelby has been through so much, especially this past year, that we decided it was time to do it. Her disease is considering "life-threatening" so that makes her qualify.

Just wanted to share...