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 sounded so beautiful.
We haven't done much traveling this summer, as it is so hard with JoMo. He doesn't really like being in a stroller - in fact he usually screams and cries within the first 10 seconds of sitting in the stroller. Not sure why. So, to try and fix this I went out and bought yet another $300+ stroller - this one, the bumbleflyer, has a handle that flips, so he can ride in his stroller and watch mommy and daddy. The first few weeks were rough, but I am happy to say that last weekend we were able to go to the mall for almost 2 hours. This is the longest Joey outing we have had in MONTHS! I hope this trend continues (fingers crossed).
Ron and I are doing ok. We have some good days and some not-so-good days. Why some are good and some are bad - no idea. Some days I can just look at my little man and be happy that he is here with me. I know that I am so lucky to have him and see his beautiful face and smile. Other days, however, I simply cannot get past the fact that he won't be with me forever. On those days his beautiful face feels like a tease "see what you have and what you won't have someday". I look at all the other children out there and think "why Joey", "why Ron", "why me?????". But, fortunately for me, Ron and Joey, our bad days are far outnumbered by our good ones.
The other day Joey slept at his Grandma and Grandpa George's and it was so strange in the house without him...while part of me enjoyed the lack of responsibility, the other half kept thinking "so this is what it will be like when Joey isn't here anymore...". Sad, I know. But again, I'm able to focus on our beautiful boy more days than I focus on our loss.
And, more good news...Ron has not had a seizure since father's day. This is a HUGE relief as not only does this scare the s*it out of him, it scares me too. Plus, the stress of worring is almost too much.
and the final news...we are having a benefit to raise money and awareness for Joey and Tay-Sachs. The benefit is called the JoMo Halloween Funraiser and will be on 10/23 at the 20th Century Theater in Oakley. It's a halloween themed dress up party. THANK YOU to the 20th Century - they are doing this FREE of charge and even giving us all of their profits! You all rock!
Love to all,
Rachael
Wednesday, July 30, 2008
Friday, May 2, 2008
couple pictures that i forgot about
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
Wednesday, April 23, 2008
New News on Joey
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 on 5/3 and his actual birthday on 5/5. We can't wait to celebrate this huge milestone!
Love to all,
Rachael
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 on 5/3 and his actual birthday on 5/5. We can't wait to celebrate this huge milestone!
Love to all,
Rachael
Monday, April 14, 2008
Joey and "Muddy Buddys"
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, we went to a Jeep Club event, hosted by Muddy Buddy's Jeep Wrangler Club of Dayton, Ohio. Joey's uncle Rick is a member. It was, by far, the most amazing afternoon. We met tons of wonderful, kind people who donated ALL of the profits from their meet and greet to Joey. And, the winner of the raffle ALSO gave all of her money to Joey.
We want to make sure that anyone reading about Joey knows what a wonderful group of people Muddy Buddys Jeep Wrangler Club of Dayton is. They barely know Joey's uncle Rick, yet donated all of their proceeds to Joey. AND...they have already offered to host another event for Joey. To all of our new Muddy Buddys friends - thank you. Words cannot describe the feeling of joy you brought to our family. I know that the world is filled with good people after spending time with all of you.
And for those of you in Dayton/Cincinnati area, the group is hosting a park clean up next Saturday, 4/19. They will be particating in the Five Rivers Metro Park Clean up.
You can check out Muddy Buddys website at http://www.muddybuddys.net/main.htm to find out about this great group of people and the park clean up next week.
Once we download more photos tomorrow, I'll post some of Joey at the Muddy Buddy's event.
Thank you all again,
Love Joey, Ron and Rachael
On Sunday, we went to a Jeep Club event, hosted by Muddy Buddy's Jeep Wrangler Club of Dayton, Ohio. Joey's uncle Rick is a member. It was, by far, the most amazing afternoon. We met tons of wonderful, kind people who donated ALL of the profits from their meet and greet to Joey. And, the winner of the raffle ALSO gave all of her money to Joey.
We want to make sure that anyone reading about Joey knows what a wonderful group of people Muddy Buddys Jeep Wrangler Club of Dayton is. They barely know Joey's uncle Rick, yet donated all of their proceeds to Joey. AND...they have already offered to host another event for Joey. To all of our new Muddy Buddys friends - thank you. Words cannot describe the feeling of joy you brought to our family. I know that the world is filled with good people after spending time with all of you.
And for those of you in Dayton/Cincinnati area, the group is hosting a park clean up next Saturday, 4/19. They will be particating in the Five Rivers Metro Park Clean up.
You can check out Muddy Buddys website at http://www.muddybuddys.net/main.htm to find out about this great group of people and the park clean up next week.
Once we download more photos tomorrow, I'll post some of Joey at the Muddy Buddy's event.
Thank you all again,
Love Joey, Ron and Rachael
Wednesday, April 2, 2008
question of the day: what is Canavan's Disease?
there's a pretty good explanation of it over at Jacob's cure at www.jacobscure.com
or mom explains it pretty well below
or mom explains it pretty well below
this is just a test run
today's day one of blogging for Joey, our favorite little man in the whole world, the reason i get up in the morning.
Updates on Joey, 4/2/08
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 resources:
http://www.canavan.org/
http://www.ninds.nih.gov/disorders/canavan/canavan.htm
We are still pending the "final" results, confirmed by another blood and urine test. But the Dr's are 99.9% sure this what it is.
What does this mean for Joey? We don't know. What we do know is that Canavan's disease is a cerebral degenerative disease that affects the nerve ending in the brain and causes progressive brain atrophy. There is no cure, nor is there a standard course of treatment.
Right now, we are really in shock, but we want to tell all of you how much we love you. The amount of love and support we have received is amazing...I had no idea we had so many people who loved us so dearly.
thank you and we love you all,
Rachael, Ron and Joey
To date, we have an initial diagnosis of Canavan's Disease. Here are some resources:
http://www.canavan.org/
http://www.ninds.nih.gov/disorders/canavan/canavan.htm
We are still pending the "final" results, confirmed by another blood and urine test. But the Dr's are 99.9% sure this what it is.
What does this mean for Joey? We don't know. What we do know is that Canavan's disease is a cerebral degenerative disease that affects the nerve ending in the brain and causes progressive brain atrophy. There is no cure, nor is there a standard course of treatment.
Right now, we are really in shock, but we want to tell all of you how much we love you. The amount of love and support we have received is amazing...I had no idea we had so many people who loved us so dearly.
thank you and we love you all,
Rachael, Ron and Joey
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