Back from Conference

Mike and I are back from the CHARGE Conference and the whole experience was amazing! We learned so much, met some of the families we follow via the listserv/blogs, met some new families and met parents whose CHARGE child is now in heaven. We also had the opportunity to have breakfast with the founding father of CHARGE Syndrome. For the first time ever, we felt like we were surrounded by people who just "got it" and words can not describe how great that feels.

I'm glad we waited to go to the conference until Ben was past a lot of his major medical surgeries. Two years ago I think it would have been too overwhelming and emotional for us. Life with CHARGE is so complex and involves so much - and the conference is a reminder of that. Families have to manage so many major medical issues that doctors don't see very often, let alone all combined in one person: muscular and skeletor issues, neurological problems, feeding issues, deaf/blind obstacles, balance problems, airway issues, behavioral problems, autistic tendencies, sleeping problems and more.

The conference armed me with new information and research from experts in our field to take to our doctors/teachers to help with all the above issues. Some of what we learned contradicted what we've been told from doctors. One major thing we've learned is that Ben IS probably considered deaf/blind even though his vision issues aren't severe. But the issues he has combined with his hearing loss are enough to qualify us for services. Also, we were told not to give up on Ben walking one day (despite what the Ortho doc said). At the least, give him until 10 years of age before starting to equip our house wheelchair accessible. And at 10, if he is still showing the desire to walk, continue to give him more time. That was worth the trip in itself!

We are very grateful to the CHARGE Foundation for the scholarship they give first time attendees to cover the conference fee. That was a huge help! In 2011, the conference will be in Orlando, Florida. We are going to start saving now! The next trip we would like to bring Ben.

Exploring the House

Ben has been doing great lately. He made the switch to full feeds with ease and we have been keeping very busy with lots of guests and picnics.

Today, Ben started doing something he hasn't done since he leg break in December of 06. He started expoloring the house! He has been scooting EVERYWHERE and this time, he is doing it with much more curiosity. He really studies everything and notices things he hasn't noticed before. It is so great to see him wondering (by wondering I mean on the floor and on his back of course) and really getting into things the way a little boy should.

His favorite activity today (and there were a lot to chose from) was unrolling the toilet paper. He made his way into the bathroom and was reaching really hard for the roll. The tippy top of his fingers were the only thing that could touch the roll. I let him keep on reaching because his arms are so tight and it was a really good stretch. After enough touches with the tips of his fingers, his dream came true! A square of toilet paper flung over and he snatched it up and gave a big pull. Needless to say, he unraveled the whole roll and had a great time. We will be keeping the door closed to the bathroom in the future but I had to let him have his fun this one time :)

This Thursday through Sunday, Mike and I will be heading to Chicago for the CHARGE Syndrome Conference. I am SO looking forward to it but also very nervous. This will be the first trip Mike and I have taken in 4 years. My mom will be here watching Ben - thanks mom, what would we do without you!

Still in the process... and still going well

Yes, good news! We are still in the process of switching Ben's formula. He is going to jump up to full strength tomorrow and it is going well so far. Some minor bowel issues but nothing a little decrease of his daily laxitive can't help - we hope. It has been a pain free transition!!

So far, so good...

I hate to even write anything in fear of jinxing myself, but so far Ben has tolerated the first step in switching his formula for two days. Today I plan on trying a 50/50 mixture and sticking with that through Sunday. Thank you to everyone for your kind words of support! I'll keep you posted...