Ok. Guess my "little girl" is growing up after all. We were doing some browsing on the computer this morning and she said to me (after looking at her website). "Mom, I want my pages to look different." So, we sat down and talked about what she wants changed about it. It's a tall order, but I think I can do it. She wants to have a photo album so people can see more pictures of her and her sisters and her and Landon and the rest of the critters in our household. She also wants me to add a section for her favorite things instead of just a few pop up windows. *clears throat*...sooooo..guess I have my job cut out for me. I'll get right on that! 

Wow, am I ever far behind. I'm looking at the most recent post and it's from last year and I was stating that I was behind even then. My sincerest apologies to all who have been reading. First off, let me say that the Lyme Disease scare that I had was a false positive test that had come back. After waiting a few months and then being retested, the conclusion was the results from the first test were not true. Whewwwwwwwww..that was a huge load off of my mind when I found that out, because I heard that some people can suffer years with the symptoms.

Ayla and I have been doing well. We are still waiting on the schedule for her surgeries to take place and hope to hear something by this Tuesday. Ayla is a huge fan of Taylor Hicks and we were checking out his website and some pictures and listening to music of his when we came across his Official Soul Patrol site. We were browsing the forum pages and noted this one post about the Snoopy Dance and that it was where Taylor got all his "moves" from, but you couldn't view the video unless you became a member. Mind you, it's after midnight and this child of mine is still up, so I told her that I'd get her registered and help her to write some posts if she "promised" to go to bed. LOL..well..it worked. (After she found out that he is going to be at the Big E here on the 29th she was all excited which is why I couldn't get her to go to bed earlier, we were both reading about the concert details.) To make a long story short, she finally went to bed and I decided that I'd try and get her website updated a bit.

You can read more about her surgeries on the Health Update page, but I will explain briefly here that she will have 3 surgeries at Shriners Hospital here in Springfield and will be in the hospital approximately 2 months. We were expecting the first surgery to take place the end of September, but are still waiting for her doctor to confirm that for us. I would like her to be able to see Taylor at the Big E in concert before she goes in for her surgeries if it works out.  That's all for now....more very soon.

Wow, it certainly has been a long time since I updated this journal, or the website for that matter. I do apologize to everyone and will update the site as soon as I can. I've already begun to update some of the main pages, but it will take some time to update the Heath Update page and this journal.

All I can say for now is that we are both happy and healthy and looking forward to a nice summer!

 

~ Sue

Recently found out that I have Lyme Disease.....not sure what else to say about that right now. I'm learning every day more and more about this disease, how it manifests, how it spreads, the different stages one goes through, and of course the various types of treatment and how controversial it seems to be. Sometimes I get very angry because I look at myself in the mirror and don't see anything different about me, yet try and do some of my regular every day stuff and feel wiped out after a few hours. The bodyaches, the join pain...not fun. I don't like feeling sluggish all the time, it bothers me. Being my own advocate and being proactive in my own healthcare seems to be what I need to do in order to get through this and be there for my daughter as well. Some days...all I do is sleep. Those are the days that I feel the worse, when it takes every bit of strength I have to get dressed and be ready for Ayla when she comes home from school.

Earlier this month Ayla started Track & Field through the Child & Family's Disability Resource Program. It's given her a great opportunity to meet others who are in wheelchairs, to socialize with kids her age, and to get plenty of exercise. She's really enjoying it and I love watching her enjoy herself so much.

She wants to participate in the summer regional games in Canton, MA the weekend of June 10-12th, so I will register her with the NEWAA; which is the New England Wheelchair Athletic Association. I'm looking forward to that weekend, it should be a blast!

Ayla's surgery that she had on April 11th for the shunt revision went very well. It was greatly needed as the color has come back into her face, the bags under her eyes are no longer there and she seems much more aware of what's going on around her. Her teachers at school have also noticed that she's more alert, happier, and seems to "get the concepts" alot easier now with her math and english. I'm really pleased about that. My mom came up from Florida to spend a few days with us at the hospital which I was forever grateful for. I didn't realize how much it would mean to me until the day of the surgery and we were waiting for the doctor to come out and tell us the surgery was over. Ayla had her post op appointment today and everything is just fine. We won't have to see the doctor again until next year this tim. I'm relieved this whole situation is behind us now and we can mover forward. Ayla also turned 9 this month and is excited about the new look of her website.

 

 

Hello everyone,

My apologies for taking so long to get the medical info updated on the website. I've been distracted alot lately with recent stuff and just haven't felt much like working on the website. BUT.....it's updated now and there will soon be a new look to the website. Ayla is getting older now and with age comes new tastes in just about everything. In her words..."Mom, I'm not a little girl anymore". *grins* Well, she's still MY little girl, but I'm going to honor her wishes and put a new "face" to the website by her birthday on May 15.

Wow, we sure have come a long ways since that night on my daughters 8th birthday when our car was stolen, along with her wheelchair, booster seat and handicapped placard.

 It seems that someone is certainly watching over us. A local radio station did a public service announcement in hopes that one of its listeners would spot the car. Two weeks later, we received bad news the Friday before Memorial Day weekend that the car was found, but the damage to the car was more than what the trade in value was. These chain of events started us down another path that I didn't quite understand but since coming to the end of this path, I understand quite well.

Struggling to come to terms with the loss and invasion of our "space" was tough. I never felt so violated, so helpless, so alone as I did then. I searched my heart, and knew that I had to have faith, that God would see us through this. So I did and our prayers were soon answered by someone who saw my post at Masslive.com. From there, Tom Shea wrote an article in our local paper and we were overwhlemed by the outpour of responses and support. We were well on our way to getting the bike I so desperately wanted to get for my daughter; when that wasn't even my intention in the first place. Sometimes prayers that have gone silent for so long do get answered.

To make a long story short, my brother and his wife helped me with some money to get another car, the booster seat was replaced as was the handicapped placard. Slowly, things started to turn around for us and we were getting back to a sense of normalcy.

On Friday, August 27th, the Friday before Labor Day weekend, Ayla received her very first "bike". Actually it is a tricycle, but if you ask her, she'll tell you outright that it's her bike. What a day that was and how excited she was to finally get it after all this time.

Shriners Hospital, along with Burke Medical Equipment, worked together to get Ayla another wheelchair and on Friday, September 10th, Ayla received her new wheelchair! A pretty blue one like her last wheelchair. She proudly showed off her new wheelchair to her teacher and classmates at Pottenger Elementary who "oohed" and "aaahhed" over the slick looking chair.

:sighs: So yes, we've come a long ways since that night back in May. I've said it before and I'll say it again. Life is an adventure, with all of its ups and downs. Having faith  can make all the difference in the world on how one handles the adventure.  ~  Peace be with you

Hey Everyone.... you'll be glad to know that as of last weekend, the order for Ayla's bike was mailed to the company in Texas. We've had an abundance of orders for lights that are still coming in so you will soon see that there is a new progress chart up with 40 lights sold so far. As promised in my website, Ayla and I are continuing to sell the lights and will dontate another bike to another boy or girl. Thanks to everyone that either donated money or who actually bought lights. It's greatly appreciated.

In other news, once Ayla gets her bike, it is our hope that she will be featured in the Republican again, along with a picture of her on the new bike. Another local pubilcation said that they might be interested in doing an article on Ayla and her new bike as well. Ayla is getting very excited as her bike will soon be here.

Well, the lights finally arrived today! I'm really excited, because aside from the ones that are going to be given to those who payed for them. As promised on the website; I am going to turn around and sell these lights and start saving for another bike to brighten another childs life like I've done with Ayla. We still have 3 lights left to sell before we can send in the last order of 20; but when we do that Ayla will be getting her bike!! Woohoooooo