Thursday, September 30, 2010

Fall, Fun and Fabulous Evaluations!

Wynn taking control of his own heart check-up, grabbing the probe with a smile of course!
Dori Snuggling with Miss Jen (Bishop), future mother in law of Ben or Alex.
The UNDEFEATED Colts!! Alex 1st row, 2nd to the right; Ben 2nd row 2nd to the left
Wynn enjoying his breathing treatment

It's fall, and it finally feels like fall! It's only making it to the 80's so that's a nice cold front for us. Football for Ben and Alex is going great --- they are still undefeated in their final year of flag football (next year they move up to tackle). Yesterday the boys started their after school golf program... I think they like it. The boys have been doing great at school and they begin bringing homework and studying for spelling tests next week after report cards come out.

The babies have had their OT and PT evaluations done, and I'm happy to say both babies have progressed very well compared to where they started. In PT, Dori has advanced to the strength and mobility of a 6-9 month old, and in some cases 12 month old for certain skills. He is using little help in sitting up and he actually sat up for 3-4 seconds all by himself yesterday. The therapist and I started screaming happy but unfortunately we scared the crap out of Dori with all the hollering. oops! He started off with the ability of a 3-6 month old so we are proud of how much he has accomplished since the end of May when they started with their new therapy ladies.

For Wynn in PT, he has also made good progress as well. He started around the same level as Dori and he is at a solid 6-9 months, but lagging a little bit behind in Dori in many areas but that's ok.

In OT, Dori he is doing well. He's progressed to around a 6 month old (starting at a 3-6 month level). Wynn has progressed to around a 6 month old as well (starting off at 1-3 month level in most skills).

Yesterday they also saw their cardiologist (their new one since their old one retired). They after running tests and doing echos/sonograms to see their cardiac function the doctor bumped up their meds by quite a bit. Wynn's heart condition is basically the same as his last check up, but Dori's has gotten a little bit worse. His heart is having to work too hard so his left ventricle has enlarged (just like a muscle, if you pump your left arm with heavier weights than your right arm, then your left arm will be bigger since it's being worked harder). Enlarged hearts are a norm in ML2 kids so it's an expected progressive situation that we'll continue to monitor. They'll see their cardiologist again in 4 months. We'll continue to treat it through medicine than doing something more invasive at this point. It wasn't good news but he's as happy as could be so he doesn't know the difference. As long as he's not distressed and in pain, there's no sense in us getting worked up about it either.... just keep pluggin away.

We've been eating in our backyard and watching lots of football now that it's cooler weather. The babies enjoy being out there, Ben and Alex love having friends out there watching TV or playing around, and Chris loves his TV out there. And I can actually still watch my cooking/decorating shows during football games inside and watch the mayhem outside from my chair :)

The MPS Society Fundraiser that is coming up at the end of October is in full prep mode... Alma and Stephanie are getting the word out and evites will be going out soon. Start getting your costumes ready... bragging rights are at stake for the most creative, and prizes are being gathered for the raffle winners. yay!

Oh and on a final note, we fired our au pair. So Chris and I are reverting back to the olden days (before Anna came) when we juggle between work, big boy stuff and baby stuff. I'm actually having fun with the babies during the day so it's nice to spend more time with them. It didn't work out with Aury unfortunately... we gave it 4.5 months but she needs to be with a family that can better suit HER needs and take more time to attend to HER requests, so we're not the ones for her. We got spoiled with Anna who was very independent and very flexible with us, who was very fun and appreciative of things, so if we could find ourselves an Anna clone that would be PERFECT!! :) The agency is looking for a new au pair for us but since the babies are considered "special needs" it's hard to find a girl who wants to JUMP at the chance to be in a home with 4 boys, 2 that are special needs. Who wouldn't want to be a part of this rockin' bunch?! really!?! ha! Oh well... onward and upward!

Enjoy Fall y'all!

Tuesday, September 21, 2010

Buffalo Bills & Ironman (September 2010)

What an inspired day I had today! I was proud of the babies getting their new leg braces/boots today for the 1st time from Mr. Spencer. I think Dori remembered him from his duet with Chris the last time we were there. We are easing them into wearing these... eventually they'll wear them for about 6-9 hours per day. Today they wore them 2 hours on, 2 hours off, over and over. I told the Ben and Alex it was the babies' Ironman legs. They thought that was cool.

Then at lunch I went to hear Jim and Jill Kelly. Jim Kelly used to be the QB for the Buffalo Bills in the 80's. They wrote a book Chris bought me last week called "Without a Word". Their son, Hunter, was born with a lysosomal storage disorder called Krabbe Lukodystrophy... it's in the same family of genetic terminal illnesses that the babies have. Hunter never was able to utter a single word but his love for his parents, his sisters and life were very evident to all who knew him. Their book and the message they shared today were truly SO inspiring and such a blessing to Chris and I. Chris was gone today working in Nebraska, I really wish he could have heard their program today. So many things in their book is so familiar to us, and it was great to read it and hear it and be moved by it.

When I went to get my book signed, I thanked them for being a strong voice for the parents of children with genetic disorders. I showed them a picture of Dori and Wynnie, and then I lost it. (Tears, lips wouldn't stop quivering, snot running down the nose, the whole nine yards). But they were kind and I was so embarrassed. I started off so composed and by the time they signed my book, I left the line looking like a hot mess, sobbing. N-i-c-e.

On another note, plans are in full swing for the most awesome Halloween party this side of the Mississippi. For those of you that went last year... you know what I'm talkin' about! Party for a great cause! To raise money for the National MPS Society!! And see if this is the year I convince Chris to go in drag!! (ha ha!) Sponsors are getting locked in, prizes are being secured, and secret costume planing are all underway. Saturday October 30th is the big night, so get ready!