Saturday, February 7, 2015

The Fastest TToT Post Ever! And also, Ever Heard of PACS1? TToT #86

I've decided I need to work on my speed writing skills. It takes me far too long to write posts. So today, we're going to practice. As the boys would say, "Time me!"

1. Most computer issues can be fixed simply by turning the thing off and back on again. Brilliant.

2. Despite Eunice jinxing my vacuum with all of her "Dysons are the worst" talk last week, I was able to get my vacuum to full suction after it suddenly stopped sucking up the dirt. I cleaned the filter and the roller, but I'm pretty sure the biggest problem was the colored pencil someone had sucked up with it.

3. Every time we sit down for dinner these days, Cuckoo immediately asks the big kids to tell stories about when they were younger. I am loving every minute of it. And no, I did not pay him to do it.

4. I've been meeting some new friends on the internet through a Catholic bloggers group. Amelia, who writes at One Catholic Mama, is one of them. We have so much in common! She has lots of kids, her husband is a lawyer, and she knows a thing or two about farm animals. (As it says in her "About Me" page, she "used to take ultrasound pictures of bovine ovaries".) It's always fun getting to know someone new. One of her posts I really liked is about how posting what she wore each Sunday healed her.

5. I finally convinced Bryan that Phoenix would never get 50 hours if he didn't help. Now that Phoenix is getting more comfortable behind the wheel, Bryan is feeling more comfortable with the idea of being his licensed passenger.

6. This behemoth



is almost gone. This is the cake the family brought home from the Cub Scout cake auction while I was in Ohio. I want my beautiful island back.

7. If you ever want to get teenagers to loosen up and quit being grouchy, put on the Frozen CD. Cuckoo asked to bring it in the van so we could listen to it at pickup on Thursday. It's been playing on repeat ever since, and every single one of us still sings every song at the top of our lungs. Star is currently the one walking that line of curmudgeon and omnipotent, but when that CD comes on, he is smiling and singing and laughing and having a great time. He even turns the volume up on certain songs.

8. Friday was a half day at the younger kids' school, so we had a nice long afternoon to relax and play some games. Bonus for the day was the Boy Scout dinner Friday night. The relaxing and playing time was lengthened since I didn't have to worry about fixing dinner.

9. We've still managed to avoid snow. The blizzard stayed to the north of us, and I made it home from Ohio last week without incident. (I was quite worried for a while. It was snowing hard in my hometown, with people sliding off the road all over the place. 30 minutes outside of town, though, the temps were high enough that I had nothing but rain for the rest of the way.)

10. Many months ago, I began reading a blog called "Undiagnosed, but Okay". The author has a daughter with many medical issues which no one could find a reason for. After years of trying to find answers, she finally found a lead and the courage to drive far away to see a new doctor. Tests were done, and a mutation was found. She is one of only 20 kids in the world who have been diagnosed with PACS1.

Kerri renamed the blog "Diagnosed and still Okay". Because they are. While her daughter still has the same medical issues, they now know why, and it's made a world of difference. Kerri has been able to get in touch with the other families who have the same diagnosis. The similarities between the kids is remarkable.

From now on, February 7 will be known as PASC1 Awareness Day. They aren't looking to raise money. They simply want people to be aware so other families can benefit from diagnosis. Kerri and her family wouldn't have known to ask for the test if it weren't for someone who had read her blog and given her the name of the doctor. She hopes others can get the same help she did.

Do me a favor and click on over to Kerri's. Read some of their story. Have a look at the photos. Keep this in mind the next time you hear someone talking about medical issues in her child that they just can't figure out.

Ooh, almost forgot to mention the thankful for this last bullet point/number. I'm so glad that Kerri was given the lead to help her find the answers she was looking for.

So, how was your week? Let me know about the smiles and thankfuls either in the comments or in a post you link up.

Have a lovely day!

PS. Did you count? How long did it take?




Ten Things of Thankful


 Your hosts

Join the Ten Things of Thankful Facebook Group

41 comments:

  1. At first, I had thought that the photo in #6 was a crocheted snake... That is a creative cake!

    ReplyDelete
    Replies
    1. It does look crocheted, but in fact it is covered in Reese's Pieces. Those Cub Scouts go all out with their cakes.

      Delete
  2. I had read that Kerri finally got some answers. WHat a journey... tenacity ... really amazing. Read your grandma post as well but couldnt comment for usual reasons... loved all those old photos and too bad the real catch is married!

    ReplyDelete
    Replies
    1. No joke. She never gave up, and her tenacity paid off.

      Hahaha! Funny you say that. There are few men in the facility, so men really are a catch. :)

      Delete
  3. That cake is AMAZING! I'm so pleased your family kidnapped your island to support the scouts and showcase such a VERY impressive cake. I hope it tasted as good as it looked.

    YAY for Kerri, and for Bridget's diagnosis. What a relief for them, and this PACS1 thing is something I'm really excited about - I want the day to go well for them.

    Very pleased you didn't slide off the road. Even WE had snow this week, can you believe! COME ONNNN SUMMER!

    ReplyDelete
    Replies
    1. It is a fantastic cake. The scout and his dad had to have spent a lot of time on it. They said it went for the least amount of money. I'm guessing it's because the moms there were thinking "I don't have any room in my kitchen for it!"

      It has to be a relief to find some reason and then to find others going through the same things. I'm happy for them.

      I saw your snow. I held back from commenting on your photos because all I could think was, "Merely a dusting!" :) We had a gorgeous, sunny, warm-for-February day. It was marvelous, and has really put me in the mood for spring.

      Delete
  4. I too got stuck with the cake. What a great job putting that together.

    Frozen is fun. My great granddaughter is into all things Frozen.

    Have a fabulous weekend. ☺

    ReplyDelete
    Replies
    1. Just making sure everyone knows my kids did not make the cake. They bought it at the Cub Scout auction. A Cub Scout made it. Beautifully I might add.

      Cuckoo got the CD for Christmas, because he looooves the movie and songs. We just can't help but sing to them.

      Delete
  5. That is one amazing cake! I popped over to Amelia's blog. What an inspirational post. Body image improvement is near and dear to my heart. Thanks for sharing it. The family that sings together is one happy family. I love that the older ones are sharing memories with the younger. So much love in that.

    ReplyDelete
    Replies
    1. It was a great cake. One of the best ever done at the auction.
      I thought of you when I read it and linked it. I had seen plenty of people doing the What I Wore Sunday posts, but never thought it was more than a bit of fun. I'm so glad it was something positive for her.
      Especially when they are singing songs from kids' cartoons. :)
      The first night, we sat at the table for almost 2 hours. The big kids did all the talking. Finally, I am getting to hear what they think and remember about their childhood. So far, it sounds like they have good memories.

      Delete
  6. Aww..thanks so much for the shout-out!

    And that cake..wow! I've never seen a rattlesnake cake before...but I guess cake form is better than the real thing!

    ReplyDelete
    Replies
    1. I wanted to introduce you to my friends! :)

      It was most certainly one of the best Cub Scout cakes I've seen!

      Delete
  7. That cake is amazing and I can see why you would like the island back!

    Love the sharing of stories and the singing. Sweet memories in the making.

    ReplyDelete
    Replies
    1. The cake was certainly impressive, but the time has come to get my kitchen back. :)

      It's nice to listen to the things the big kids remember fondly. And the singing will probably be one thing the little boys talk about when they are older. I love it.

      Delete
  8. LOVE when answers finally come to light. I remember the feeling when a doctor finally believed what I was telling him and didn't blow me off. That, in my book, counts as all 10!

    You did great in your speed writing.

    I am glad you didn't get snow, but rain instead. We have a little falling here. That cake looks amazing.

    ReplyDelete
    Replies
    1. I could not be happier for Kerri and her family. It's been a long road with a whole lot of doctors.

      Thanks. :)

      We have been blessed with very little snow. It's been close, just an hour drive north has gotten dumped on more than once.

      The cake was a serious work of art.

      Delete
  9. Did I count? Well, I read the post earlier, but was having trouble commenting. I came back to it tonight, and then got pulled away with phone calls and family conversations. You probably wrote the post a whole lot faster than I read it!

    That snake cake is amazing! (Is it a king snake, or the venomous kind that looks like a king snake?)

    ReplyDelete
    Replies
    1. Hahahahaha!! Sometimes it just works out that way. I'm glad you stuck with it and managed to comment. :)

      We're going with king. (I have no idea.) The "title" of it was "big snake". :)

      Delete
  10. PASC1? I will check it out.

    Oh, yeah, the snake this is HUGE.

    ReplyDelete
    Replies
    1. Good! yes, check it out! Thank you.

      It is gigantic. Our family of 8 couldn't even finish it before it went bad.

      Delete
  11. Love the cake! How awesome is that???? I've also read Kerri's blog on occasion; I bet it was a huge relief finally having an answer of sorts. The genome is indeed a very complicated and sensitive yet amazing system. I, too, love when the girls inquire about "old stories from when they were little"; so many fun memories are coming back..

    Have a wonderful new week, Christine!!

    ReplyDelete
    Replies
    1. It was one of the best Cub Scout cakes we've ever seen. And one of the biggest. :)

      Just knowing that Bridget doesn't have anything that is terminal was worth all of the trouble. I can't imagine not knowing for so many years.

      It is fun to talk about the old days. It's even better when the big kids share their versions of events with the little kids.

      Thank you!

      Delete
  12. Hmmm, my teens would jump out of the car if I insisted on playing the Frozen CD. Yours must be much more pleasant.

    ReplyDelete
    Replies
    1. I thought mine would, too, but are they not only staying in the car, but they get annoyed when I turn it off. No one is more shocked than me.

      Delete
  13. Oh, and I forgot to mention, I wish I could get my daughter to take an interest in us once in a while.

    ReplyDelete
    Replies
    1. It isn't easy raising teens, for sure.

      Delete
  14. Are y'all doing all Anna's sound effects and asides in Do You Wanna Build a Snowman? That marks a certain level of proficiency. The snake cake is the coolest thing!

    ReplyDelete
    Replies
    1. We don't stop with Anna's sound effects. Every word. Every sound. Done. Even the eye blink sound in "Fixer Upper".

      Isn't it, though?!

      Delete
  15. 1. That's my M.O. Works with my iphone, too.
    2. I broke the little pedal that makes my vacuum go from its fully upright position to recline (like on an airplane). Did you know you cannot push a vacuum that is in its fully upright position? I think I can finally justify buying a new one and dumping this one - it weighs a bazillion pounds.
    5. Your life is going to change in magical ways when that kid can drive!
    6. That cake is awesome! Our cub scouts did that. I can't remember what I made, but I remember what I bought!
    9. Glad you made it home safely. We still have not gotten ONE SINGLE SNOW DAY. That is not a thankful.
    10. I've always enjoyed reading Kerri's blog and am so glad they finally got an answer. Bridget is such a darling girl!

    ReplyDelete
    Replies
    1. You are going to have to start commenting earlier in the weekend. I forget what I wrote and have to scroll aaaaaaalll the way back to the top to see what #1 was. :)

      1. Ha! Works for phones, computers, and iPads. Thank heavens.
      2. You are absolutely justified.
      5. I am already thinking on it. "In May, I can do _____, because he will be driving." Life will change for all of us.
      6. YOU WEREN'T SUPPOSED TO MAKE ANYTHING!! IT IS A MALE PROJECT ONLY! The ones we've purchased are infinitely better than the ones my boys and Bryan made.
      9. The public schools have gotten a couple of freezing cold days off, but we've only had one delay. No cancellations.
      10. She is a sweet little girl. I couldn't be more happy for Kerri and her family.

      Delete
    2. 6. I think the rules vaguely stated the scout was supposed to help.

      Delete
    3. Well, that's just not right. Takes away the whole point of the thing! Well, besides the raising money part. :)

      Delete
  16. 2 - Hehe, fame at last lol. Your link will now take you to my most recent post which, quite coincidentally, is all about cleaning.

    6 - Love the snake cake, what was it made of?

    ReplyDelete
    Replies
    1. I just read it. What lucky readers I have! :)

      The head and tail were made with rice krispie treats. The rest was chocolate cake. It was covered in chocolate icing, and the colors were Reeses Pieces candies.

      Delete
    2. Sounds delicious - and I could certainly have helped to eat it if I'd been there :)

      Delete
    3. We could have used your help. We couldn't eat it all, though they tried!

      Delete
  17. That cake distracted me so much I had to re-read half of this! Wow.
    Frozen music has a way of sucking people in...even my Broadway and Disney hating Hub enjoys it. That says a lot.
    I have to check out that post about what the woman wore on Sundays...interesting. But tonight I need to go back to bed. I'm trying to get around to all and I'm just not quite there yet. Perhaps tomorrow, when I believe we will be having an ice day here. Ice is just nasty.
    I've read at Kerri's a few times, but more often lately since Facebook. I have to admit I quite like how many new people it's allowed me to read and connect with.
    Happy week to you all!

    ReplyDelete
    Replies
    1. It looks awesome, doesn't it? The boy and dad who made it did a great job.
      It does! Can't. Stop. Singing.
      It was an interesting perspective on the What I Wore Sundays. I always saw it as a fun thing to do, but nothing that would help anyone.
      I'm glad you are at least well enough to read a bit. I don't know whether I want you to have an ice day or not. It would mean you'd have Kidzilla at home, and you can't rest so much with her home.
      Kerri is a great lady. It's been nice seeing you all over FB, commenting and posting.
      Thank you!

      Delete
  18. That was pretty quick!!

    I am glad about Kerri. Will surely spread word as far as I can.

    The bit about wanting to know stories about the big children growing up is just so sweet! It makes way for reliving so many special memories :) :)

    ReplyDelete
    Replies
    1. I couldn't be happier for Kerri and her family and the 20 other families that now have answers and support.

      It has been wonderful to hear all of the stories from their perspective!

      Delete
  19. Thank you so very much, for telling everyone about PACS1 and helping us spread the word. That cake is freaking huge!

    ReplyDelete

Thank you for taking the time to tell me what you're thinking!