Sometimes a blessing.....

Nevin doesn't seem to "own" his calendar.   He is able to identify the month, day, year........ but he doesn't own it.  He hasn't learned to "use" it, rather he still relies on me.   So I've been thinking about ways to make it more usable for him, like moving his calendar to his room, so it could become more of his "wake-up routine" to figure out what day it is and what the plans are.   Maybe changing our "bingo stamping" method to something that would be a little easier to correct if any over eager stamping happened.

But today, it's actually kind of a blessing that he doesn't know that he's missing Special Olympics track and field day.  The doctor recommended no running after our visit yesterday.   After a sleepless night Thursday night, we figured out that he needed to go to the doctor for pain and swelling in one of his testicles. Doctor thinks ..... maybe just bruised or slight torsion, .... who knows... he gave us a script for antibiotics if it gets worse and said to rest   ........... anyways....... no special olympics today.    And Nevin didn't notice...... that he missed it.    The weather wasn't good (cold and rainy/snow flurries) so I don't feel too bad about missing it (especially since I'm still feeling so yucky with my cold).    

I just talked with Nevin about it and he's a little disappointed, but okay with it.  There's always next year!

Sick

I've had a nasty head/chest cold for a week. I felt a little better Thursday and yet a little better Friday. I went to bed last night with the assumption of being "all better" today. NOT! :( Sooo...... I guess I'm not going to be able to convert my "to do" list to a "taa daa" list.   Bummer.  Hmmm....... chicken noodle soup, I haven't tried that yet. That's probably what's missing, I'm not going to be all better until I've had chicken noodle soup.  ......off to put the chicken out to thaw and go take a nap.  

Chicken Dance

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My Motorcycle Man

Research

Nevin and I are participating in a Research Study on Communication Skills in adolescents with Down Syndrome, being done at the Waisman Center in Madison, WI. This was our fourth year (and last.... he aged out of it, now that he's 18). So we got to travel to Madison and stay at the motel and then go through some different assessments. This year we were blessed to have my friend, Amy accompany us..... so the whole trip was fun..... even the drive. Except for a minor detail (we got lost on the way home)..... not really...... we just missed a turn in the fog, and because of the fog it took us until Maquoketa before the fog started to clear and the scenery did NOT look familiar. We then figured out that we were going the wrong direction! It only added about 30-45 minutes to our drive, but we were still glad to get home!

It is very interesting to watch the assessments that they perform. And Nevin works very hard for them. We get to listen/watch through a one way mirror from an adjacent room, where they are taping the session.

Soooooo..... do you think he knows we're on the other side of the mirror? :)

He was very serious about work time..... but would get his "sillies" out when she allowed him to take a break.

Either matching tattoos or matching purses

My friend Amy volunteered to help me find some girl time and escape my "Tyrannosaurus Rex" mood. So we "got away" to a nearby city for an overnight, with lot's of shopping and giggling fun.

We've been friends for 23 years. We've been through "life" together. Many times sharing tears and laughter together as we "grew up" and learned to become women. Never have I doubted that if I needed her, she'd be there. Soooo........ when she heard that I was desperate for some "girl time" she came to my rescue.

There just isn't anything as healing as laughing 'til ya cry and as we age...... the "other" saying makes more sense..... i.e. meaning we do more cross-legged laughing these days. :)

Since we've been through everything together...... we decided it was time. Time to do something to honor our "sisterhood". Sooo...... it was either a matching tattoo or matching purses.


After much thought we decided to get matching ............

Tyrannosaurus Rex

Nevin called me a Tyrannosaurus Rex yesterday. Now, I don't really think he was "calling me names", as he often assigns "parts" to people around him in his plays. So I don't think he meant it personal...... but I took it personal, because I've been a bit ...... hmmmm....... shall we say..... grumpy..... lately. So I think it was an assignment well deserved. :( After I got over having my feelings hurt, we went on to have some very productive school time. In fact, school has been going very well lately. It's been fun.

As I went to my bible for some guidance with my "attitude", I decided to go to the book of Jonah. My bible study group is studying Jonah right now..... so I planned to "review and process" some of what we've been covering. Nevin joined me, so I read it outloud to him. He was very engaged! So we went on to "school" and processed the story of Jonah together. Nevin was very tickled that all the letters of his name are in Nineveh and that he was able to "I Spy" that fact. You might also note in the picture that Nevin usually wants to "re-process" the story with him in it....... thus, Nevin helping Jonah from the dry land to get to Nineveh. :)



I do think that I need to look inward and take better care of myself. I need to sit at the feet of Jesus for a while and surrender some things that I've been carrying. No big secrets..... just life..... it gets real heavy when you try to carry it on your own. I think some of my issues are a combination of cabin fever, and lack of "girl time". Soooo....... girls..... we got some "planning" to do. :)

Dinosaur Bones in my dining room!

Nevin worked hard digging up dinosaur bones in my dining room. We used the Usborne Dinosaur Kids Kit. It was great, Nevin loved it. It was also very good for eye hand coordination (as you can see in the video). Nevin posted lot's more pictures on his photoblog and also a story he wrote using Pixwriter. He wanted me to post this video, so y'all could see how hard he worked. :)

Photo and video editing at www.OneTrueMedia.com

Upside of Down

I just HAD to post this. I love it. Thank you Tara from EmmaSage Blog for posting this.

This wonderful song and video created for the 2006 World Down syndrome Congress by Fred Penner.

Enjoy!

Blessed by health

As I've joined the world of blogging, I'm enjoying reading blogs written by others.  I have especially enjoyed the stories of other families who've been blessed by something extra (i.e. an extra chromosome, T21, a.k.a. Down syndrome. 

I am reminded of how blessed we were when Nevin was born healthy.   His heart defect was minor and did not require any surgery.  He latched on and nursed as well as my previous two babies (and although he couldn't handle too much flow..... pumping first to avoid "drowning" seemed to solve this problem .... and after several months, he did fine).   His immune system was easily compromised, requiring frequent hospitalizations that first year,  but nothing compared to what some families must deal with.  

Sooo..... we were spared some of the extra "worries" that can sometimes come with "extra chromosomes".    Please join me in praying for families who have to deal with significant health issues related to DS.   I've added links to a few of these families.     Brianna is dealing with leukemia, she is part of our local Down syndrome support group.    Kennedy's daddy is in Afghanistan, she has had multiple health issues including Leukemia and now faces surgery and a halo for severe neck instability.    I'll let you meet Chelsea and Parker via their blogs.   Princess Mya doesn't have Down Syndrome...... but she does have a brain tumor (her grandpa and my dad are cousins).

Thank you for your prayers.