Thursday, May 30, 2013

A more complete update...

Well, Mr. Twisty is doing great. After a few days, the fur started to fall off on his hind leg, but it's growing back now and he is getting around just fine.

Life here is insane right now. School is out and I'm trying to find a groove. I'm bottom heavy on kids with six of them age eight and under. It's been too cool to go to the pool, too wet and muddy to play outside. We are playing with a daily schedule and buddy system. If I don't make a plan for the summer, we'll never get to do anything fun.

So how is everyone doing?

Ruby is enjoying tap and ballet class. She spends a lot of time making up silly songs. Tonight it was something like, "brush your teeth after you squish that bug..."

Ralph...oh gosh. He's going through a real independent phase. He has a very high opinion of himself and doesn't like to need help, even when he needs help. He recently locked himself in the bathroom at Spangles, a local burger place. I stood outside the door agonizing whether I should go find a manager or just give the boy some more time to listen to me and open the door. I waited. And listened. I could hear him washing his hands (so PROUD!!) and pulling out paper towels. Then he opened up the door with a "what's the big deal" look on his face...then asked for help with the snap on his pants. Oy!

Zhen has grown up so much. He struggles at school with work ethic...or they struggle with him. Not sure which it really is. He's been fine at home except for his LOUD vocalizing. I must shush him a hundred times a day. We are resigned to the fact that he eats stuff, and we just do our best to limit his opportunities to be alone with attractive materials.

Theo had a breakthrough over the past few months. I was preparing to share about him in more depth, but he's been backsliding lately. On the positive side, his growth hormone medication was switched over the winter and we are seeing significant weight gains. He feels so solid and chubby even...makes me happy to squeeze his ample thighs. I remember way back when we first started giving him injections that I could not find injection sites with enough subcutaneous fat.

On the negative side, his mood has gone downhill lately. He acts like he is in pain again but his tests for h. Pylori came up negative. He's really only happy when he is eating or playing in the water. That's my plan for his summer...snacks and pool time.

Max is settling in. He tolerates Ruby, who is all over him, all day long. He is learning how to eat textured food. I'm not using the blender much at all anymore. Tonight I didn't even try to mash his beans. We are still struggling with drinking. I did buy a Haberman feeder and he is learning how to suck a bit, but it's slow going. We finally had an IEP meeting for him last week and the coop has agreed to let him attend Extended School Year (summer school) for five weeks. It's a half day program, so I think it will be a great way to ease him into the school environment.

Hammy finished the school year with the most reading counts points in his whole grade. He loves to read but don't ask him to do any chores...! He's hoping to learn how to swim for real this summer. Let's hope it warms up soon.

Rose is almost done with her lessons for the year, but now that everyone else is home all day, it's tough to get her to do any lessons. She has been rock climbing at the YMCA and is getting pretty good. I may try to find her a harness of her own before the summer is over. She baked and frosted two cakes yesterday all by herself. I'm planning to teach her how to sew a sundress this next week. We are on the lookout for a reasonably priced cello for her to start on in the fall. I talked her out of playing bass...well, she did think the bass was sorta heavy when we went to try instruments.

Jordan is a rock climbing junkie. He picks the most difficult routes and tries different ways of climbing, such as using only one leg and hopping to the next foothold. He's going to try a climbing competition on Saturday. Not sure what to expect, but it should be a great learning experience.

Thomas is playing baseball and really improving. He's also swimming his first ever long course swim season. His hands and feet are HUGE, so I'm thinking that he could be quite fast if he gets his strokes down.. He would like to find some babysitting jobs. He likes kids, is patient, and has great skills in connecting with them.

Chipper is in Arizona for the summer. We miss him a lot, and not just because he is so helpful. It's great to have an extra driver in the family and another set of strong arms, but he needed to be on his own this summer. He is working at a Christian camp and having a great time. I hope he comes home ready to give his all to his senior year of high school.

Rich came home for a few weeks, but is back in California for the summer...working at a camp! I flew to Chicago to see him compete in the NCCAA track championships. He took 8th place in javelin! He is headed into his senior year at Azusa Pacific University.

Wes is working in a little town outside of Omaha. He's got a little rental house and I'm so proud of him. He's been completely independent for almost the last three years. We just don't get to see him nearly enough.

Me, I'm crazy. I'm working on event planning, non-profit fundraising, orphan care programs, helping adopting families, educating myself to advocate for him boys with DS...on top of keeping all the kids happy and alive. However, I enjoy it all. I LOVE it. I wouldn't trade my life...even in these chaotic and frustrating times.


Jill said...

Thanks for the awesome update! Love hearing about your awesome family. :-)