Saturday, February 27, 2010

Aspiring for More!

What do I do every morning and night? I read all the updates on my friends blogs about their kids. This is the only way I can keep up with everyone. Every parent has different views on living with a special needs child and the meaning of their life and how to cope and so on and so on.

I want to share with you all a post from another mother. This says it all. She has summoned up my life as well as hers.

Before I share it with you, I want to give a quick update on Joey. He had his first baseball practice yesterday. He loved batting. He was so tired from it that he fell asleep an hour before his usual bedtime and slept 11 hrs last night. OK that's it for now.

Aspiring for More!

I must admit that I am an Olympics junkie. There is something astounding about these athletes that have trained and sacrificed so much for one be the best! I can't even imagine giving up friends, school , and even family to train as an elite athlete. Then you have their families........what have they given up to fuel the dreams of their children? Some have done without for so long......while others have worked two and three jobs to finance their young hopefuls.........It really is almost overwhelming.

However, I got to thinking tonight that we parents of Special Needs children really aren't much different. I have traveled great distances, spent weeks away from home, quit my job, spent endless hours researching treatment, hours of therapy, hours giving therapy, and heartbreaking times fighting for my son. Why, because I believe in him.....I believe.

We parents will probably never be featured on national television, and our children won't be gracing the pages of Sports Illustrated. Still, we press on....some of us trying to teach our children to walk, talk, eat, or learn to be human. Daily.....all around us these struggles continue. Our medals are not Gold or Silver, they are smiles, tears, and triumphs for things most parents take for granted.

I never realized that I am an Olympian. Not a sports figure.....but in spirit because I believe that with tremendous hard work and effort AND son will have a future! I carry my torch daily with so many of my special friends with special children.

If you know one of us......give us a congratulatory hug......our journey is long and for some of us it will never end....but we believe and we have faith! All we ask for is a little encouragement......our finish line is often far away and we need to hear the cowbells and cheers to push us along the way!

Wednesday, February 24, 2010

Sitting Around!

Joey is just sitting around. .40 sec, 1 min, 2.35 min, 3 min. UH, you ask! Joey has behavioral therapy 5 days a week/ 2hrs each day. During therapy the therapist will sit Joey up, legs crossed (Indian style) not propped with anything. We will do this twice during his session. At the very beginning and then again after about 10 minutes of stretching. Each time we would time him. So before China he was sitting an average of about 3 sec. Then in Oct, Nov, Dec. an average of 12 sec. In Jan. an average of about 19 sec. Well then all of a sudden this last week and a half he has been sitting and average of 2 minutes. We have started reading books to him during this sitting time and he is able to sit longer. Another new thing is now when he falls over he will pick up this arm and try to place it on the ground (protective response). He doesn't do it every time and he doesn't get his hand all the way down, but he sure is trying.

So I guess the Stem Cells worked. hee hee hee We are going to Costa Rica in about 7 weeks for more, I can't wait. When we are in CR we will also be doing ABM (Anat Baniel Method). A therapist from Colorado is coming to CR to work on Joey and his fiancee and other friend. Even though Joey and I will be traveling with no other member of our family. We will meet up with Joey's fiancee and her mother on the connection flight. We are going to room with each other. I'm so glad she in my life. Love you Pam and Mackenzie!

Today we went to see a new Orthopedic doctor. I need to get new AFO's (ankle and feet braces) for Joey. My concern though is that he hates them, so what would be the best way to go about getting the AFO's on him and stay on him. We have decided that a little botox in his calf muscles and some serial casting will do the job. So at the beginning of April he will get the botox and then 2 weeks after, the casting will go on. He will wear them for 4 weeks, then his AFO's will be ready and he should have no problem wearing them. Also at the time when the casts come off, he will start an intensive session of Neuro Suit therapy.

As for the rest of the family.................Jack's 10th birthday is this Saturday. Jessica started softball. I finally found a couple new babysitters, what a relief. Jeremy is taking his Black Belt test in Krav Maga this weekend. Oh Yeah, I signed Joey up for baseball. Challengers league. He starts practices this Friday and has his first game on Saturday. We were a little late signing him up. He is on the Cardinals. I will post pics and videos next week.

Well that's it for now. Blessings to everyone.

Friday, February 19, 2010

It's All About How You Say NO!

Yesterday, I was judged. A committee board judged my life based on a piece of paper.

This organization is a great organization, they help many and have helped us before. So we submitted an application to ask for some more help with Joey's Stem Cell therapy. We have to write our financial responsibilities down on a 2 page application. Then it is taken to the board for review. Well they denied us. I wasn't mad that they denied us, especially because they did help us once before. I was mad and pissed off on their reasoning and their response. They just need to know the proper way to say NO! Here is what they said:

Julie after reviewing your case with board of directors yesterday, it is there determination that you and Jeremy should do more to reduce your monthly bills, ie get out of your house payment motorhome etc which would free up your income for more of the medical expenses. The purchase of a 43K dollar vehicle this month etc did not help, I am sure that was a van but selling the motorhome to cover that might have been the way to go. I am sorry to inform you of this information and wish you and Jeremy the best.

Here is my reply:

Well thanks for trying. I figured your board wouldn't understand. Most people don't understand what it's like to give up all you have to take care of your disabled child and try to keep life fairly normal for your other kids that were affected by this accident.
So getting a job, selling our rental property and two of our cars, and holding a fundraiser just is not enough? Also the new car, which is a handicap accessible van, my father bought for us.
I'll pray for you all. Thank you for your help.

The person in charge of responding to the applicants needs to learn to say "Sorry you have been denied". Thats it, nothing more. I also can't believe that a group of people can judge my life on 2 sheets of paper listing my financial responsibilities. At least call us in front of the board and talk with us in person. URGGGGGGG! Ok, thanks for listening I'm over it now.

On a happier note, during Joey's behavioral therapy, which happens 5 days a week 2 hrs a day, Joey did awesome. The first thing done when the session starts is they sit him up and time how long he can sit for. Then they will stretch him and will sit him again. His average sitting time on the first sit is about 12 sec. His average time for the second sit is about 20 seconds. Well yesterday he decided to blow us away. The first time he sat for 40 seconds. Also during these 40 seconds, he began to fall over and so he put his hand to the side to stop himself. That in its self was HUGE. The therapist and I were beaming and jumping out of our skin. Well it gets better. The second time Joey sat, he sat for 2.35 minutes. Yes that's right, he sat for 2 minutes and 35 seconds. Everyone started talking to him and he was looking around and he just loved it and sat and sat some more. It was awesome. Well I knew he could do it because his PT says he does it all the time and school teacher says he does it a lot also, but this was the first time I saw him do it. I'm so proud of him. Way to go JOE!

Well that's all I got for now. Best wishes to everyone.

Monday, February 15, 2010

Just Another Busy Week.

Life is always busy around the Stafford home. Jessica started softball, so we have practices to go to 3x a week now. Jack taking Krav Maga 3x a week also. Joey has his usual routine. School Mon., Wed., and Fri's, therapy Tues and Thurs's and then Mon.-Fri therapy at home 2 hours each day. He is also back doing equestrian therapy on Sunday's. Amongst all this running around with the kids. I have been working 4 nights a week for the last month and a half. Jeremy is crazy busy with all his different jobs and training for his Black Belt test next weekend.

As far as Joey's healing. He is doing awesome. No more HUGE changes for the last several months, but he sure is building on the changes he has made. His eyesight is really coming around. I'm praying that after our trip to Costa Rica for more SCT his eyesight will be completely restored. He is a lot more cognitively aware. His response time is much quicker and he is saying a ton more words. A few weeks ago we got Joey's wheelchair. He loves it. It makes a big difference in his posture. Joey is a very happy boy. I am very very pleased with his progress.

We leave for CR in 8 1/2 weeks. We are going with two other moms and kids. When we are there, he will also receive ABM therapy. this looks similar to PT, but it works more on the neurological level. Then when we get back from CR we will do more Intensive Suit Therapy at NAPA Center and hopefully more ABM.

I finally got a new van this weekend. What a convenience it is. The ramp is in the back. Joey sits in his wheelchair for the ride. I'm sure my back will be saved.

I'm still trying to raise monies for our Costa Rica trip. Please help! You can donate through paypal on the link on the right column.

Blessings Always