Sunday, September 9, 2012

Campaign Update: For those who prefer to contribute directly to Aiden and help us save Indiegogo's 7% cut, you can send contributions to the address below: Aiden Jones C/O Elaine jones PO BOX 350026 Grand Island, FL 32735 Make your contribution payable to Aiden Jones and put your selected Perk in the memo line

Monday, September 3, 2012

The campaign on is doing well but we need your support. Please visit the campaign @ and like it, tweet it, Facebook it, email it to everyone you know. We can't do this without your support. We're risking potential financial liability of about $400k per year. We only need $65,000 per yr to make the plunge for Aiden's future. We can carry the financial risk over 3 yrs if needed but the $65k/yr is upfront costs to keep us off the street and ensure his enrollment and therapies are paid for. Please network and promote this campaign. Thanks!

Sunday, August 26, 2012

Fundraiser Campaign on Indiegogo Just Launched!!!

We just launched a fundraising campaign on Indiegogo. It's called "Community Challenge - Raise the Bar!" in the Community forum. Click the link to go to the campaign: or enter Aiden Jones in the search field on the home page Aiden has an opportunity to enroll at Clarke Schools for Hearing and Speech in Jacksonville, Fl where he can receive the intensive, specialized speech therapies he needs to thrive. These therapies are not available locally. We don't have the resources to make it happen alone. Aiden's dad will have to relocate to Jacksonville with Aiden to make this happen while Aiden's mom stays in Kissimmee with the older siblings, works, and makes ends meet. Not the ideal situation but the best chance for Aiden to get what he needs to thrive during this crucial stage of child development. This opportunity could save Aiden years of therapies, spare him from difficult social pressures, bias, and discrimination, and is basically the best chance at building the foundation of a successful, independent future. Please help spread the word. We need this campaign to be successful and with your help, it can be! We can't thank you enough for the support, encouragement, and generosity each of you has provided. Thank you so much! Now go send the link to everyone you know!!!

Friday, August 17, 2012

A Whole New World

I feel like I should be breaking out into the main song from Disney's Aladdin when I say that but it most definitely is true! Aiden had his second cochlear implant surgery on July 2, 2012. He is absolutely stronger than he was in November. We did not even have to spend the night for observation. In fact, 8 hours after surgery our little trooper was "singing" in to the handle of a jump rope! What an amazing kid! Since the activation of this 2nd implant Aiden's world has been quite different. He is now responding to sounds he never has in the past. He tries to copy sounds that we make. It is so neat! I am not sure if his right ear has more damage than the left, but there is a world of difference! It's amazing! Since I have been off for the summer, Aiden and I have found ourselves on the road back and forth to Jacksonville as much as we can in order for him to receive speech services and for cochlear mapping.Those are really LONG trips, especially when we have to travel with just the 2 of us. Unfortunately, school is starting back up and his speech therapies are reduced greatly. WHY? No one around the Orlando area is able to provide services. Here we are in the land of Mickey and have all kinds of things that are not found anywhere else, but yet we can't find a therapist to give our son what he needs. Strange isn't it? Aiden has been with Early Steps since he was born and just started receiving services in JUNE!!! He is almost 3! We have lost a lot of time and will have to work twice as hard to make sure he is ready in a few years for school.

Thursday, June 14, 2012

What's changing..

Aiden is 2 years and 7 months as of this post. He is absolutely a barrel of energy! He of course is a stubborn 2 year old that wants things his way and when he wants them. He is learning that is not the way the world works. Poor baby! Tough being a toddler :) Cochlear Implant Update: Aiden has done extremely well at wearing his processor or his "ears" as we call it, at daycare. At home on the other hand, not so much. I keep telling his daddy, Jeff, he doesn't want to listen to us telling him "NO!" all the time. Daddy has a stubborn I mean streak of determination and was able to "convince" Aiden that he was going to be wearing his "ears" at home too. He does MUCH better than before he and Daddy had their "discussion," but we still have our moments. Aiden saw his speech therapist, Ms. Catherine, today and she was thrilled with what he is doing. He is making lots of sounds that he never did before the implant. He is sounding very much like a 6-9 month old baby with his jibber jabber. He has more signed words than spoken vocabulary, but that is to be expected. Ms. Catherine was so excited that we were progressing to implant # 2. Implant # 2?? Yes! Aiden will be hearing in surround sound soon! YEAH! We are scheduled July 2nd. Another thing that is "changing" is hopefully the diaper situation! Now that mommy is home for the summer...potty training HERE WE GO!! **Fingers Crossed**

Monday, November 14, 2011

CHOP follow up

It has been since September since I have blogged last. I have had a lot of emotions that I have been dealing with. CHOP asked us to come up and do some exploratory procedures. Jeff and I decided that because of financial reasons only one of us would go. Daddy went to CHOP with Aiden. Boy that was a lot harder than I thought it was going to be. I was a nervous wreck. I cried days before and I cried the day they left and while they were gone..might as well change my name to Mississippi..cause the tears were flowing!
Daddy and Aiden were troopers! They muddled through without Mommy :) They arrived on Thursday and met with the airway clinic specialists and the ENT. He had a chest xray and an anestheisa consult. They manuvered the streets of Philly in a taxi cab and did quite well.
Friday was procedure day. Aiden was sedated and had 4 procedures done. Three teams of doctors worked together and an endoscopy, bronchiectomy,they also injected some saline into his lungs and suctioned it back out to collect samples and well as the ever so fun endoscopy.

Saturday, September 24, 2011

The CHOP Experience

Whew - what a whirl wind it has been the past few days. Aiden, Daddy and Mommy traveled to one of the top 10 children's hospitals in the U.S. to get some much needed second opinions and consults for Aiden.
The first day we met with the general surgeon. It was a little backwards, because he would have liked to have been seen last, however it was a good consult none the less. He proposed 4 different surgical options for Aiden that may help reduce his reflux, which we hope would also reduce the aspiration. He of course really wanted to get the other docs' notes and then make the best decision for Aiden. We also met with the geneticist. She is top notch. She noted that Aiden's height is appropriate for a 12 month old and his weight is appropriate for a 15 month old. That would be fantastic if he wasn't 22 1/2 months old. So we will probably be adding another doctor to our list, an endocrinologist. She also stated that our little darling is absolutely unique, which we already knew..but always nice to have it confirmed :)Finally on day 1 we met the GI. He is actually more concerned with the reflux than his slow digestive emptying. He would like to have a 24 hour probe test done in order to measure the amount of reflux he actually does.
Day 2 started with an upper GI which Aiden was just thrilled with as you can imagine. We then met with the pulmonologist. He wants to consult with the Airway Clinic at CHOP and refer him to Otolaryngology (ENT). He also would like to to send a camera into his lungs and take some biopsies and exam the airway. So the diagnostic team took all this information at the end of day 2 and this is the next step: In November, (just before his 1st Cochlear Implant) we will be traveling back to Children's Hospital of Philadelphia and they will admit Aiden to do those exploritory procedures. After the findings of those tests, most likely surgery repair will be scheduled. The general surgeon forewarned us that for that type of surgery, they will want him at CHOP 2 days prior to surgery and then the recovery time is 3-4 days in the hospital.
I will be updating some pictures so you can see Captain Destructo...keeps getting cuter and cuter :)