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Liam had HURLER'S SYNDROME / MPS1.

He had a bone marrow transplant August 15th, 2008, and earned his angel wings September 25th. Please consider joining the National Marrow Donor Program! For more information go to http://www.marrow.org/.

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Journal

Friday, June 26, 2009 9:55 AM, CDT

Wednesday night we watched a new tv show - The Philanthropist. It's primarily about a billionaire that decides the charitable contributions of his company (1.8% of their profits) isn't enough. He becomes motivated to do something after he becomes temporarily trapped in an African country (after a buisness meeting) due to extreme weather and flooding. During the flood he saves a young boy, which we later find out reminds him of his son that passed away a year ago.
At one point he's bitten by a rattle snake (which, because they didn't show the tail, I suppose we were to take for some rain forest viper) and a hallucination of his son leads him to his destination, and the medical help he desperately needs. He actually gets to touch his son's hand, and it made me want to go find a rattle snake (or rain forest viper). Ha!
I wonder what other bereaved families thought of the show. I can definitely relate to his desire to help a "substitute" child. Jim and I were in Target a few weeks ago and an itty-bitty was crying and crying, sitting in his carrier in some mother's shopping cart while she held up clothes and big brother pushed the cart. He wasn't really crying... just protesting. Take a breath, make a loud, unhappy noise, take another breath... kicking feet the whole time. If Jim hadn't been with me I don't think I could have restrained myself - I would have walked over and asked if I could just hold him while she kept shopping. I wouldn't walk away with him, just spend the afternoon with a strange woman, holding her baby in Target. I've never been the most socially adept person, and I was pretty sure that would be weird, but I asked Jim a couple times and he had to keep me grounded. It's almost a hedonistic tendency - I knew it would be weird, but I wanted to do it so badly that I didn't really care. But Jim cared, and I didn't want to embarrass him... so I guess it was good he was there. :)
Saw the OB again and Lila is doing well. Heart rate around 145 bpm and she pushed against the Doppler-listening thingy. I think Jim and I have decided that because we're waiting to run the test for Hurlers until she's born, we'll have the nurses in labor and delivery draw whole blood to send to the lab. We'd originally thought to send them cord blood to test, but if we take 5 cc's for the test, we don't know that there would be enough left to bank. This way, if the test for Hurler's comes back negative, we'll have a better chance of having a large enough harvest of stem cells from the cord blood, if it eventually needs to be used for a transplant. Speaking of banking cord blood stem cells, has anyone ever had any experience with "ViaCord"? They have a program where, with a medical referral, we could have the stem cells banked for 5 years for free, because a sibling might need a transplant. But that's not worth much if they're not reputable. Anybody have any thoughts, has anybody heard of them? Please post to the guestbook or email us (liamlarrow@hotmail.com).

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