Wax museum

Ry had an assignment at school to write a biography. The end of the project was to turn yourself into the person and sit in a wax museum as people passed by to see you. 

Ry chose Twiggy. 

This was a perfect pick for Ry. While many students chose athletes and persons of historical significance Ry chose a person who had significance to her. A fashionista. A person who came from a rather ordinary back ground to become a person in her industry who helped create and push the bounderies. 

She had to have two poses which she changed every five minutes. Also a short descriptive sentence. When her button was pushed she would say.. "My name is Twiggy Lawson, most people know me for my fashion but mostly my makeup"

It was all seriousness at the museum. 

Here are a couple of her darling friends..

Martin Luther King Jr.

Johnny Appleseed 

Pocahontas 

Sacajawea 

Jane

Shirley Temple

(This is Whitney, I can't remember who she did her biography about) 

Shawn Johnson 

I was so impressed I waited till five minutes was up so I could see Ellie's next pose.

This girl did not disappoint!!! 

Ry's dance observation

She still stands a head above her peers. A tall beautiful girl! 

Munchie says

I had to write this down before I forget. It was so funny when we heard it..  You may have needed to be in the moment, I am going to share anyway.

Last night for family home evening we discussed personal hygiene. We went over hand washing, teeth brushing, potty routine, and showering.. We are hoping to minimize some germs and nasty. When we got to the portion about what happens in the bath/shower I asked the kids what was the first thing they do in the shower? I was hoping for a wash yourself, in some fashion. Ry said wash your hair, Gator said wash your booty, and Eden says...totally serious..."Ummmm you peep a little"!! Aahhhh hahaha.. Don't drink the bum water people... That's all I gotta say. 

Eden also had dance observation day. She loves dance, she pays attention and trys to hard to do all that her teachers ask of her.. 

Results

We have most of the results from Sunday night to Monday morning.. 

He killed me in Cars memory.. My memory just isn't as sharp anymore *wink*... 

Since he does pills so well now, anytime liquid meds are the only option he gags them down.. I let him have some cafeen free diet coca low low. A huge treat for me because I have been sober for almost  four months. It really hasn't been too bad. 

So the results are...

Echo (pictured above) looks unchanged from the last one. This means he isn't getting worse! 

Labs/CBC/CRP- normal and no major infections.

No changes on medications or activity. 

He is doing pretty great. 

We haven't gotten the results from his PRA panel. I am hoping his antibodies have gone down and he is responding to treatment. 

We scheduled the next IVIG treatment and will wait to hear what his titers say to confirm. 

May had her synigis injections. Those are mean shots but have clearly done their jobs thus far. I am so grateful for medicine, vaccinations, and immunizations that make it possible for my kids to live today. 

Little weekend review

Ry and daddy went to North Carolina last week. Jeff had a business conference there and his brother and family live there. We don't get to see them nearly enough so we decided to send Ry so she could be with her cousin Grace. They had a total blast. 

On Thursday Alex was awarded the Builder award. His school gives these awards to students who do exceptional things. Alex was nominated as the Builder for Listening to understand. We are so proud of you buddy! 

On Friday I was looking for something to keep this boy chill for five minutes... It made him happy and quiet for 3 hours. He kept saying he was engineering things.

Daddy brought bracelets home for Eden that you can decorate and add stickers to. She loved the sparkles. 

The Walker girls, Ryleigh and me, and Angie got to go down town for women's conference. A historic event as Ry was able to join us. 

And right this minute Gator and I are sitting in the RTU eating popcorn, Doritos, and chocolate Reese's peanut butter milk shakes and playing Cars Memory, watching movies and getting IVIG... 

This is called the rocket ship, it makes a noise like one is taking off. It also makes it so his IV doesn't hurt. It's awesome. 

Tomorrow he has an echo and clinic... Wish us luck! 

Thanks to Jeff and my mom who are holding down the forte and managing the girls. 

We are lucky to be on this journey!

You are probably thinking... She has finally lost it! How is it possible to be LUCKY? 

Well....

I am going to tell you. 

I have mentioned before, that many people have lived a life time and don't get to experience half of the things that Alex has/gets to. A few things that many people miss out on is genuine kindness, generosity, feverrant prayer in his behalf, and just plain incredible thoughtfulness. He experiences a great deal of pain, frustration, and fear as well. But having such wonderful distractions from these things has made the ick parts so much more tolerable. 

We just got one of the neatest, most thoughtful, sweet things... Well I don't even have words in my head to explain it. 

Let me just give you the details and you will see what I mean. 

We call him Big Alex so we don't confuse him with our Alex. He is my cousin and is and always has been quick to smile, easy to spend time with, has one of the greatest laughs EVER (makes me smile just thinking about it), and is amazingly brave. When I think about Big Alex, I think of our childhood getting to be the big cousin helping out after he was born. Playing in the yard or dirt... He is always happy. The best part is that Gator shares a name with one fantastic guy! 

Big Alex is in Afghanistan (Gator calls it Af-gal-i-Stan) serving our country. I wish I knew more details about how many times he has been out, or what exactly he does (all I know is that it has been extremely dangerous in the past and could be now) 

Doing all that he is doing there, he thought of his cousin's little boy... 

He wrote me a while back on FB and said he wanted to send Alex something. When I told Gator this he said. "I hope it's a gun so I can go.. Trrtrrttrrrrtttrrr" I has to break it to him that I didn't think that would get through customs. To which he said "stupid customs". 

Guess what did come? 

This amazing flag was carried by Big Alex . Then dedicated to Gator. 

I bawled..,

I asked Gator if he understood what this meant and why it was special? We explained why we are free in this country and that freedom is because of the sacrifice of men and women willing to do scary things, risk their lives and leave their families. Big Alex is doing that for us. It means we get to choose to believe what we want, get medical care, and so much more. You could almost see it click

In his head and he ran downstairs and wrote this.... 

See, we are lucky! 

Babe

We have a friend who is single (and available) she was helping me out a little this week. We ran to Lowes to get some parts for a broken toilet handle. (My boyfriend/hubby usually manages all things home repair. But since he is at a convention... I think for wood?? I am playing the role of master plumber with Angie as my supporting actress) 

Car rides are fun because you can crank up the 'good' songs and chat inbetween.. Well Eden must have been thinking about this a while because she says to Ang, "You don't have a Babe, do you Ang?"  Angie thinks about it for a while and says "well, I don't know" Eden thinking even harder says "nope, you don't have a Babe, daddy is mom's babe." But then, not wanting to hurt Ang's feelings says "your doggies could be your babes". I had a great laugh about that because she used to call everyone's husbands the daddy. So it would be.. You don't have a daddy[at your house]... It was so confusing to her little brain that now she refers to husbands as Babes! 

May has now begun telling me she has an Eeeeeewww! Which means please change this ick on me. 

Oh, she doesn't love her oxygen all the time. But who could blame her? She ripped it off and I had to almost hog tie her to take off the old tender grip (little circle cheek sticker) then clean her skin, then apply the new tender grips, and last get the cannula back in place. I chased her around while she ran free for a little minute. 

Sorry for the blur.. Wiggly and aware that if I hold her long enough she will be subjected to the cannula. 

Those are some nice dark lips.. They should be the color of mine if she was oxygenating her body correctly. Also, see how dark her nose looks? This is another indicator. It's kind of hard to see in the other picture, but her feet turn a darker shade too. Lower extremities don't oxygenate if the body is working to push oxygen to major organs like the heart, brain, liver, kidneys... 

Some interesting things to see if you know what to look for.