Amanda Rachel
Amanda was born on Wednesday, June 28, 2006 at 3:16 pm

April 2008

Amanda continued to jump her way through life this month, as is evidenced by some videos below.

Her language skills continue to improve and mature, and she now speaks in sentences. Many of them start with the phrase, "I want...". She is starting to use pronouns, too, but keeps getting them backwards. She'll sit in the stroller and say, "Daddy, push you." She has, however, mastered the concept of "mine." Thank you, day care.
She has also imparted some sage advice onto us (click for a 15 second video).

She's a polite child, as well. One evening as Amanda was walking down the hall, Luna was lying in the way chewing her bone. Amanda stopped and said, "Excuse me, Luna." (Which sounds more like, "Neeme, Nuna"). Luna obediently moved. Amanda then looked at the bone lying in front of her feet and said, "Excuse me, bone." When the bone didn't cooperate, she bent down, moved it to the side, and carried on.

We don't have too many pictures this month, but we have several videos. Those of you who have seen her recently will agree that still shots just do not convey the reality that is this energetic little girl.

There is also a You Tube video (5 min 30 sec), created by the woman who organized the seder, with music and a couple cute pictures of Amanda, as well as Carly and Faren (also in the Havurah). Amanda doesn't make an appearance until 3:48, where you can see her in the back in her pink dress and frog hat sitting at the table. There is a good one of her at 4:37 and also some of she and Carly in the crowd at 4:44. Unfortunately, we completely missed the frog song due to an ill-timed diaper change.

Annabelle is in Amanda's playgroup (which used to be Stacey's New Mom's Group until the babies became toddlers!). Belle is about a month older than Amanda. When she was 6 months old, Belle was diagnosed with Morquio Syndrome. This is a progressive degenerative disease that causes severe bone & organ damage. Due to damage and complications, many diagnosed with Morquio Syndrome may have a much shortened life span. Children with severe Morquio Syndrome typically stop growing at a very early age and rely on wheelchairs for mobility from around age 8-10. They also must endure many painful surgeries to maintain quality of life. Annabelle has severe Morquio Syndrome. At this time, there is no treatment or cure.
To learn more about Annabelle, please visit www.caringbridge.org/visit/belle.

Belle's parents are taking an incredibly positive and proactive approach to their situation and are planning several fundraisers to support research for a cure. A treatment that could slow and/or stop the progression of this disease has been discovered by Dr. Tomatsu, a well known bio-chemist and researcher. Dr Tomatsu is ready to move forward with a clinical trial to get those with Morquio Syndrome (including Annabelle) treatment; however, raising funds has become a critical factor in making this dream and reality. Together we can be that difference to so many others!

A fundraising event coming up on June 1, 2008 is the Mad Hatter Tea Party. To learn more about this event and others, purchase tickets, or make a donation, visit www.morquio.org.