Friday, November 19, 2010

Wynn's attitude problem in PT

This morning the OT and PT therapists were both here at the same time working on the babies. I have to post this picture... they put the babies face to face to see them interact. Dori loves his "lazy boy" bumbo but Wynnie was hating it today, so the whole time Dori is smiling and talking to Wynn and Wynnie is screaming mad!

Last night Chris had the babies on the floor and was pretending to "wrestle" with them. He put Wynn on his chest and was acting like Wynn was beating him up. Ben ran over and said with a really worried face "Papi are you hugging him your softest?" We had to explain to Ben that papi was only "pretending" to wrestle and that the babies were fine. That was so sweet of Ben!

Tonight Viktoria arrives ... it'll be so nice to have her here and not to mention all the help she'll provide to all of us.

Monday, November 15, 2010

Football, birthday party and fun! (11/15/10)

Boom Boom Pow! Ben getting a flag at the All Star Game!
Alex in the middle with the running back's flag.... sweet!
Dori loves story time with his night nurse.
Don't let Wynn's face of horror fool you, he loves his birthday party. The theme for the party was "You are my sunshine" since they are that and more! Their shirts say "I will make a difference", so so true!
Dori having fun around the house with papi.
The babies are proving that terrible twos are just a myth.... both had a happy weekend relaxing at home playing with their brothers and spending quality time with papi :). We are anxiously awaiting the arrival of Viktoria (from Germany). Today she arrived to NY for her Au Pair school training, so by Friday night she'll be joining our family. Welcome to the circus! I mean, welcome to your new home!

Ben and Alex continue super busy with their football season. Since they were picked for the all star team, we continue with practice 3 nights a week. They won their 1st all star games in big fashion, so they'll be heading up against flag football teams from all over the US this upcoming weekend. How exciting! Our collection of trophies is getting shinier and bigger. They are so proud of themselves, as are we. The ultimate goal if they make it past all the games this weekend would be to play Super Bowl weekend amid the festivities at Cowboys stadium. One game at a time...

Our National MPS Society fundraiser was a total blast! I hope to get pictures from people soon, but we had alot of hilarious costumes and people with a fun and giving spirit. This year we doubled what we raised last year, so I was happy to send over $4,700 worth of checks to the good folks at the National MPS Society. We allocated the money that Dorian & Wynn raised to go 75% to research (we need to find a cure!), and 25% to go to family support (for other ml2 families that may have financial burdens from medical bills, or in need of home medical equipment that isn't covered by insurance). We are so humbled by the generosity of everyone that participated in the party by donating items for the silent auction, buying raffle tickets and just having a great time for a great cause. So grateful!! So happy!

Monday, November 1, 2010

Dorian and Wynn's head

The babies had a busy day today. Wynn had an appointment with the dental surgeon for the big cyst he has growing on his bottom gums. After doing a little more research, he called the house and told us that he wouldn't recommend doing any surgery on it at this point. Which is great news because we don't want them to undergo any surgeries that are not absolutely necessary. So in the meantime, Wynnie will have a cyst the size of Mt Everest in his mouth but he doesn't seem to act too bothered with it so we are fine as long as he acts fine. Poor little guy!

Then we took the babies to Medical City really quick to get paperwork, then over to Children's for them to see the neurosurgeon Dr. Sacco. Posted above is Dori's cat scan from last week. The very noticable bump is on the back/bottom of his skull. You'll see a break/gap of skull bone underneath where the bump is. From what he saw in the scan and what he felt upon examining him, he thinks it's a dermoid cyst. Basically it's harmless. Unless the cyst begins to change alot or if he seems he is in pain, Sacco said no need for operating.

As of last week, Wynnie out of the blue had a bump pop up on the bottom of his skull too. So weird how a couple of weeks ago neither of them had anything and now within a week they both do(!!!). Since all of this sprung up not even 2 weeks ago, Dori's bump has gone from soft to hard.

Why does they have those bumps there? In a healthy baby, the skull bones are not fully formed and fused together, there are many gap areas in the baby skull at birth. As a child grows, so does the brain, so these gaps in the skull allow the brain to grow within a flexible area that allows for that growth. In Dori and Wynnie's case, their skull bones have nearly all fused together (far earlier than normal), so as they are getting older, their brain has no where to grow. So their heads are a little differently shaped, Wynn has slight bulging on the sides of his head above his ears and Dori head is uneven and pointy.

For both babies, the verdict is to do nothing. At this point it's not causing them any pain or visible discomfort so Dr Sacco felt that their cardiac and respiratory problems outweighed the risks that would be involved in operating... the only way to fix this would be to do cranial surgery to basically give the brain that room to grow (cutting through the skull to give the brain more space), so we agreed with the doctor that is completely unnecessary in the babies' case.

Chris and I were impressed that Dr Sacco really is famous. ha ha!! He and his team at Childrens were the ones that did the famous surgery on those two little boys from the middle east (conjoined twins that were attached to the head). They had a picture of the boys in the office so it was clear that Dr Sacco and his colleagues are top notch. woo hoo!

On a faaarrr more positive note, what a fun weekend! Our MPS Fundraiser party was super fun, we had a great turnout, lots of people donated for our raffle, and lots won some great prizes with the silent auction as well. We're still getting checks rolling in for the MPS Society so I won't know the grand total until we count it all up, but I think we doubled what we raised last year. woo hoo!! We're so thankful for the Caracalas's and the Mazurs for co-hosting this party with us, and for all our friends and family that showed up and had a great time. I went dressed as Tiger Woods, and Chris went as my lovely mistress.

Check out the Johnson boys in the costumes... Alex was a knight, Ben was a ninja, and the babies were pumpkins. How cute!! :)