I know I always start these posts by saying I know it's been a while. So let me start by saying I know it has been a while. We have been here in NC for just under a year. Josh is getting so big. I am still searching for the best place to live and the best services. I am really missing south Florida and all of our friends. Many of you know our struggles. Since moving here Josh has been kicked out of therapy and hurt in therapy. We have been through 5 pt's in the past 8 months and 2 ot's. Josh's speech therapist is very sweet. He loves her alot. School isn't my dream for him. I don't want to say to much. because they do have a link for this blog. However it is not the right place for him. I guess after he attended Abi's Place I expect more for him. I know what he can do in the in the right environment. I just can't afford the right environment. If any of you know any legitimate work from home jobs let me know. Josh and I are taking it one day at a time. His scoliosis is still severe and his kyphosis has disfigures his back. The doctor's still don't want to operate. I am confused by this and a little relieved. The thought of that major surgery scares me. On the flip side Josh had been home with me since March and cognitively I have seen some really wonderful changes in him. Just when I thought it wasn't possible for one person to have anymore personality he surprised me again. He has started to consistently finger feed himself. I get excited at every meal.Below I have mad a video of Josh. I hope you all enjoy. Have a great day!
Josh's World: The Joys and Tribulations of Raising a Child with 1p36 Deletion Syndrome
This is a blog to keep family and friends posted on Joshua's progress. Joshua is an amazing 8 year old. He was diagnosed with 1p36 deletion syndrome when he was 3 weeks old. We have moved several times to find Josh the right help. My mission in life is to help Joshua reach his fullest potential.
Saturday, August 28, 2010
Monday, January 11, 2010
More videos for Joshie's new therapists
Wednesday, January 6, 2010
Josh in therapy
Friday, December 4, 2009
Hi Everyone
Where to start. We have had some very big changes again. We now live in North Carolina. Josh and I are not quite used to the cool weather. After two years in South Florida we are definitely Floridians. My poor little boy shivers in 60 degree weather. lol I will be updating pictures soon.
I am now an Avon representative. I am hoping that I am successful so I can be here for Josh when he needs me. Please visit my site. http://mfinn.avonrepresentative.com/ If you place an order by December 10th you will receive the products before Christmas. Also, if you purchase before the 10th type in FIRSTREP and receive free shipping. I am so excited and I would love for all of you to share in this experience.
I am now an Avon representative. I am hoping that I am successful so I can be here for Josh when he needs me. Please visit my site. http://mfinn.avonrepresentative.com/ If you place an order by December 10th you will receive the products before Christmas. Also, if you purchase before the 10th type in FIRSTREP and receive free shipping. I am so excited and I would love for all of you to share in this experience.
Wednesday, July 15, 2009
Find The Kiddie Pool... Help Change Josh's Life -adaptivemall.com
Find The Kiddie Pool... Help Change Josh's Life -adaptivemall.com
Shared via AddThis
We are at it again. Our insurance has denied Josh new equipment. Any help we get is greatly appreciated. I want to thank everybody for your continued support and patience. Thank you.
Just click on the link above.
Shared via AddThis
We are at it again. Our insurance has denied Josh new equipment. Any help we get is greatly appreciated. I want to thank everybody for your continued support and patience. Thank you.
Just click on the link above.
Monday, June 29, 2009
Josh's Birthday and other adventures
I have been really bad at updating this. I guess I will start with Josh's pictures. He has been extremely demanding lately so I don't get much time to myself. lol
We had a small celebration this year. I had planned to take him to Disney for his birthday, but our trip to PA and MD ran me a little short for our Disney trip. Needless to say I threw a very small get together.

The Cake

Only my son would cry over cake.

My mom and Josh outside of Borders

One of Josh's favorite things.
Josh on the boardwalk in Ocean City, MD

Just because he is so cute!!!
MEDICAL FUN

8 hour eeg. What a champ!

I am so proud of him. Although towards the end he only had one eye.

Prepping for casting.

Back side of cast

Front of brace

So bored

Fun with paint

Purple kisses
We have had a a busy month. We went to Philiadelphia. We went to Shriner's Hospital to get some more options for scoliosis treatment. The options we were given were pretty discouraging. I think we need to get another opinion. There has been a lot of changes recently. Josh was not given another scholarship to school. The tuition is $15,000 a year and we can't afford that. He had lost his insurance and when I finally got it back they are not approving as much therapy. There are other things, but with all of this happening I think it is time to move again. Tony and I knew that we were not going to make South Florida home. I always said about two years. I believed that when it is time to move we would know. Josh and I are taking a trip to NC in about two weeks. I want to check out the area and make sure everything is there that he will need. In short that is what we have been up to.
The Cake
Only my son would cry over cake.
My mom and Josh outside of Borders
One of Josh's favorite things.
Just because he is so cute!!!
MEDICAL FUN
8 hour eeg. What a champ!
I am so proud of him. Although towards the end he only had one eye.
Prepping for casting.
Back side of cast
Front of brace
So bored
Fun with paint
Purple kisses
We have had a a busy month. We went to Philiadelphia. We went to Shriner's Hospital to get some more options for scoliosis treatment. The options we were given were pretty discouraging. I think we need to get another opinion. There has been a lot of changes recently. Josh was not given another scholarship to school. The tuition is $15,000 a year and we can't afford that. He had lost his insurance and when I finally got it back they are not approving as much therapy. There are other things, but with all of this happening I think it is time to move again. Tony and I knew that we were not going to make South Florida home. I always said about two years. I believed that when it is time to move we would know. Josh and I are taking a trip to NC in about two weeks. I want to check out the area and make sure everything is there that he will need. In short that is what we have been up to.
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