Boston Appts.

Whew- what a trooper Will is! He saw at least 19 doctors in one day last week while we are the Children's Hospital of Boston! He saw speech therapists, geneticists, audiologists, pediatric dentists, orthodonists, cranio-facial doctors, hand surgeons, microvascular surgeons, and some who I'm not even sure what they are! He took a hearing test & passed with flying colors! He showed off his speech skills & his eating skills. (PS- my manna yesterday: Will's speech therapist feels he no longer needs speech - he is at the level of an 18 month old in language/vocabulary!!!- Yahoo for one less therapy!!!!!!!!!!! Very good manna! :))

The number one pediatric hand surgeon in the world couldn't make our daytime appointments so he & his partner came to our hotel room on a Friday evening! WOW! What service!!!

The hospital was amazing - Will's eyes were huge as he saw different cool things. The staff was wonderful- we hardly waited at all for any of our appointments & they were very caring.

I suppose one of the benefits to having a rare syndrome is you get lots of attention from experts in various fields. It was good to get some confirmation about some of the steps we are taking & some second opinions & other alternatives/options. We plan on continuing to work with the doctors there and may consider surgery at some point to add bone to Will's thumb to stablize it. At this time, it is impossible for us to donate our toe bones to Will to create fingers for him. This was very discouraging for me. I wasn't even sure if we were ready to commit to altering his body in any way but I at least wanted to be able to consider it. Mostly, I just really wanted to be able to offer him some part of me - my body gave him life, sustained him with my milk, & now I hoped to be able to give my bones to enrich his life. It's just not possible for Will however because it would put him in grave life & death danger to use someone else's bones. If he had toe bones, they would use his own bones & he would be fine (wouldn't reject the transplant.) However, it's just not an option. This was very difficult for me as was the fact that we were told Will will have extra challenges due to the fact that he is "bilateral" (both sides of his body are affected) & only has partial feet & his fingers don't all have joints or bones. I guess I know this in my brain but as I watch him develop & grow, it hasn't presented too much of an issue for him. I think of his fingers as fingers - not about how they may or may not have joints & bones. He is challenged in that he must compensate & figure out innovative ways of accomplishing tasks but he is successful. I suppose it was just hard to hear this put to words from doctors. (That whole short-sighted thing I mentioned in my previous post? This is a perfect example of how stressed & discouraged I can become when we think more long-term. I definitely do better just thinking about one week at a time!) One other thing that was a little hard is that Will now sticks out limbs for doctors to examine without even being asked. We hate that he seems to be getting used to this. (He also didn't cry during a shot last week - I fear his pain tolerance is rising or he's just getting used to being stuck! :()

However, for the most part, it was a great doctor's day & we hope the beginning of a great relationship with some very good doctors (most are the top in their very specialized field.) Will was a little trooper & the doctors were wonderful. (One even asked if she could take him home with her & offered to babysit so we could enjoy Boston- she kept showing up in various rooms while we were there to hug on Will!) It was a great opportunity & we are so thankful to have been able to go & meet with so many specialists.

Thanks for praying!