Genetics, Therapy, and Great Grandmothers

I have alot on my mind for potential posts these days; everything from Dr. Seuss stories to therapy sessions to how to include Liam's big sister into these entries from time to time. Today I'll focus on three things: Genetics, Thereapy, and Great Grandmothers.

First genetics. We had our first appointment with Dr. Ken Rosenbaum at Children's Hospital on Friday. Dr. Rosenbaum will follow Liam's development and guide us through all of the medical ins and outs of raising a child with Ds, helping us look for all of the "silent symptoms" that are common. We have heard great things about Dr. Rosenbaum from a distant cousin who has a 14 year-old with Ds. We were also given a heads-up about his crazy note taking style. I'll see if he'll let me get a snapshot of them next time. I could neither decipher his handwriting nor why he put certain notes in certain sections of the page. Watching him take notes was worth the visit itself.
 
Now, therapy. Lauren has been incredibly diligent about Liam's PT. She works daily and often twice a day on his exercises. They have gotten increasingly harder since he was sailing through his first four weeks doing all of the exercises easily. Kelly, Liam's therapist, has ratched up the difficulty for our little man and we're thankful for it. What happens though it that you start with a baby who is happy and playful, and then quickly realizes that he's actually working. Then when he tires, you see him throw in the towel. Below is a photo of him realizing that this isn't just another play session.

I'm about done with this PT session!

Finally, great-Grandmothers. Liam, Caroline and their two cousins are fortunate to still have their great-Grandmother, to have her live close by, and to be able to know her. She adores them all and it is the highlight of her week when they come to visit. For all of the great-grandchildren the feeling is mutual as Liam shows in the photo below. Today was extra special since Liam got to celebrate his 5-month birthday with his great-Grandmother in honor of her 89th birthday. Both have had a few medical issues recently, but both are rockin' today. If he has a tiny bit of his great-Grandmother's resilience, which we think he does, he'll do just fine.

Captivated by Little Nona's stories.

First Buddy Walk

Saturday was our first Buddy Walk with the Down Syndrome Association of Northern Virginia. Lauren's father and his girlfriend came. Lauren's sister, her husband and their daugher came. And my brother and his family came. Together, we were 12 walkers! Having eight family members there gave us a feeling of comfort. Going into the walk we were a bit unsure of what it would be like and how we would feel emotionally while there. Would we find the event encouraging or discouraging? All of us who came to the Buddy Walk with us felt that the event was very encouraging for our family. The weather could not have been better - a high of 70 and almost no clouds in the sky. I won't get into the details of what the Buddy Walk is in this post. You can read about that on numerous other blogs such as the Bates Motel and My Stubborn Little Miss.

We actually felt that the entire day was a celebration of those with Down Syndrome and their families, and the possibilities available today for those with an extra chromosome. There were some emotional moments, mainly toward the beginning of the event, but overall it was a happy, fun-filled day. As he did at his Healthy Heart Party, Master Liam slept through most of the Buddy Walk snug in his stroller. Shockingly enough, of all the photos that we have from the Buddy Walk, none are of Liam! But we were concentrating on just taking everything in, and besides, how many photos can you take of a sleeping four month-old? So, to give you an idea of how the day went, here are some pictures.

We want to thank everyone who supported Team Liam George at our first Buddy Walk. We're looking forward to next year...when we promise to take more pictures.

Team Liam George Arrives!

Cued up at the beginning of the walk.

Caroline on her trusty steed, Popsicle.

Caroline elated to have just met Cinderella.

Liam's Healthy Heart Party

So after a long wait we finally had Liam's Healthy Heart/Welcome to the World party on Sunday afternoon. We spent a long time waiting for Liam's lungs to clear of the fluid that built up there his first two months. Waiting for his cardiology checkups to finish. Waiting six weeks after surgery to get his vaccinations (an unfortunate side effect of being on bypass). If nothing else since Liam has been with us these past four months, he has taught us to roll with the punches, that things don't always go according to the script. Perhaps they rarely do. True to form Sunday was a cold, rainy day - a high of 52 that really felt like 45 if not colder. Thankfully we had an covered pavilion in which to hold our party. Liam was bundled up as were the rest of us, and he slept through almost the entire party. We were worried about the turn-out, but almost everyone came out for our little man.

Becca and Sammi: Our new friends.

We were fortunate to finally meet our mentor in the Down Syndrome community Rebecca Bates and her beautiful daughter Samantha. Becca is of The Bates Motel fame. She is a prolific blogger and an active member of the Down Syndrome community. (You can read her at http://thebatesmotel3.blogspot.com) Sammi is a total sweetheart with the bluest eyes you've ever seen. She looks a bit sad in this photo, but she had just woken up from a nap that she had just barely started. Who can blame her? Plus she was about to spend her second day in a row in the rain (click here for the story). Having been through the same ordeal of an AV canal repair for her daughter that we were facing with Liam, Becca helped us immensely as we prepared to turn our 7 week-old boy over to Dr. Jonas to work his magic. She prepared us for what Liam would look like with photos of Sammi in the ICU. She also showed us how good an infant looks eight days after open heart surgery. We got to talk about how amazing our kids are. We talked about the long scars that now permanently reside on our childrens' chests and compared their looks - Sammi's is wider than most, Liam's curves to the right at the top.

Nurse Eileen: Our rock from CNMC.

We were also blessed to have two other pivotal people in Liam's life join us. Nurse Eileen showed up unexpectedly. Eileen was our nurse navigator who helped usher us through the processes at Children's National Medical Center. She was a test program all by herself, and the embodiment to someone who is doing what they were meant to do in life. She even thought to bring us Starbucks and Dunkin' Donuts from outside the hospital (thank God) while Liam was in surgery and sat with us for a while and just listened as we tried to cope with what our boy was going through. Her warmth and compassion as we dealth with the longest two weeks of our lives made all the difference. We were so happy that she could join us and that she got to see how big Liam has grown and how healthy he looks since his time at Children's. Liam even greeted her with a warm smile like he remembered her. Jan Neuharth also joined us in the rain. She was the one who introduced us to Dr. Kurt Newman at Children's. This introduction unlocked a chaing of introductions that led to Liam's world class cardiology team. Without this one introduction, we shudder to think of what could have been. Lauren and I are eternally grateful for this one kind act that changed our world.

Thanks to everyone who came on Sunday. We sincerely appreciate it. It has always meant so much to us that we have had so many people keeping Liam and us in their thoughts and prayers. To be joined by so many on such a crummy day warmed our hearts yet again. I have put some photos of the party on my Facebook page. But here are a few starters...