tag:blogger.com,1999:blog-29365952990507545292024-08-28T13:06:21.224-04:00a couple's blog about the most important person in their livesRonhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-2936595299050754529.post-73572221070319025892009-02-27T11:56:00.003-05:002009-02-27T12:06:56.527-05:00

Rachael's sister Becca sent us this message from her rabbi. It beautifully relates very closely how we feel about Joey. We're not very religious, but we hold this very close to heart.Why Does G-d Create Severely Handicapped Babies?A friend gave birth to a baby with a rare condition that has rendered her severely handicapped. She is not expected to live much past her tenth birthday. I just can't

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com0tag:blogger.com,1999:blog-2936595299050754529.post-37489155311540579292008-07-30T15:36:00.002-04:002008-07-30T15:50:12.198-04:00

Hi all, sorry it's been so long since Ron or I have posted - it's been a surprisingly busy summer! While it feels very busy, we really don't have much new news. Which I think is good news. Joey is doing wonderful. He still smiles and laughs - it just melts our hearts. This morning, I heard Joey in his room and he was just laughing and laughing...I have no idea what he was laughing at, but he

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com0tag:blogger.com,1999:blog-2936595299050754529.post-43572903757766415922008-05-02T07:43:00.004-04:002008-05-02T07:49:02.129-04:00

people at work love the bumbo seat one, and i thought i'd put in another of me in the background, but this time, no bedhead

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com1tag:blogger.com,1999:blog-2936595299050754529.post-18178374884309450112008-04-23T14:07:00.000-04:002008-04-23T14:09:43.797-04:00

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com2tag:blogger.com,1999:blog-2936595299050754529.post-18016797406529987732008-04-23T14:06:00.000-04:002008-04-23T14:07:21.587-04:00

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com1tag:blogger.com,1999:blog-2936595299050754529.post-25085299637394580142008-04-23T13:55:00.002-04:002008-04-23T14:05:19.288-04:00

All-So we got some new news on Joey...they have changed his diagnosis to Tay Sachs. Tay Sachs is very similar to Canavan's, except that the life expectancy of a baby with Tay Sachs is usually around 3-5 years.I don't really have any new information, but the National Tay Sachs and Allied Disesase website has ton's of good info. www.ntsad.org.We are really looking forward to Joey's birthday party

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com0tag:blogger.com,1999:blog-2936595299050754529.post-37971531403621880072008-04-14T09:42:00.003-04:002008-04-16T08:33:42.920-04:00

We just had a really nice weekend. Our good friend Mende came to visit Joey from Minneapolis and she and Joey fell instantly in love. And, as with all the ladies Joey loves, he smiled and laughed for her all weekend (which of course, mommy can't seem to make him do!). Mende's mom, Charlotte Price also came to visit Joey and again...he smiled and laughed for her. We had an amazing time.On Sunday,

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com2tag:blogger.com,1999:blog-2936595299050754529.post-31173975234293755122008-04-02T11:48:00.003-04:002008-04-16T08:37:24.379-04:00

there's a pretty good explanation of it over at Jacob's cure at www.jacobscure.comor mom explains it pretty well below

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com0tag:blogger.com,1999:blog-2936595299050754529.post-77392580457413421692008-04-02T11:10:00.000-04:002008-04-02T11:12:52.553-04:00

saw this on sale and couldn't resist

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com6tag:blogger.com,1999:blog-2936595299050754529.post-87877898863958701362008-04-02T10:58:00.000-04:002008-04-02T11:02:23.414-04:00

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com1tag:blogger.com,1999:blog-2936595299050754529.post-51791409030439803332008-04-02T10:54:00.000-04:002008-04-02T10:56:06.734-04:00

today's day one of blogging for Joey, our favorite little man in the whole world, the reason i get up in the morning.

Ronhttp://www.blogger.com/profile/00304965723827561203noreply@blogger.com3tag:blogger.com,1999:blog-2936595299050754529.post-3474239198123767722008-04-02T09:29:00.001-04:002008-04-03T16:56:50.198-04:00

It has been a hard week for our family...the news of Canavan's is devasting. Many of our hopes and dreams feel lost. This is something I wouldn't wish on anyone. But the good news...Joey is wonderful. He is a happy, gorgeous (no...not just gorgeous, but AMAZINGLY GORGEOUS) and we love him with all of our heart.To date, we have an initial diagnosis of Canavan's Disease. Here are some

Joey's Momhttp://www.blogger.com/profile/10544261376636972220noreply@blogger.com0