LIfe........I'm Stressed!

Have you every gotten good news just to hear the bad news soon after? Well that's been my life the last few months.

As most of you know I am taking Joey to Costa Rica for Stem Cell Therapy in a couple weeks. I have not done any fundraising for this. My dad and step mom said they will give a little, and I have saved some and well over the last few months there is be a foundation that has offered to help, then change there minds. First the foundation said no they can't help (ok, Im not disappointed at this time, I'm ok with it), then they change their minds (say they are going to help, WHOO HOO!), then I get the call that insurance will cover the whole thing (double WHOO HOO). After talking to the insurance company and the foundation that has set it up, wrong information was communicated and insurance is not going to help. So now I'm going to Costa Rica and I don't have enough money (URGGGGGGGGGGGG!) I'm sure I will figure it out and I will have the money, but until then I'm stressing. I leave in 2 weeks.

Then we have a house for sale (short Sale). After 6 months of the bank doing their thing and it getting approved, the buyers back out. Back to square one. I am also trying to sell my car. Got my hopes up, had a couple people look at it, make offers, then back out.

Ok enough venting on my part. Thanks for listening.

I leave tomorrow on a 4 day girl cruise. This should destress me and get me back in control. Every 6 months or so I need to destress or I really start to spiral out of control. However, the stress organizing everyone for my departure is almost a killer. I think I have it all organized now. Daddy will be home with the kids so I know they are in good hands, my house on the other part, ........................."OH MY POOR HOUSE".

Joey has started baseball and it is so great. Jack, his brother, is his buddy during games and practices. It has been a great bonding experience for them. Joey has hit a little plateau, however he is greatly improved since summer (before stem cells). He is using his peripheral vision to see. He can sit unsupported (criss cross applesauce) on the floor for a few minutes compared to a few seconds before. Cognitively he is so much more there. He is doing great.

The one stressful thing about a brain damaged child and their lives is...........welllllllllll..............there is a lot of stressful things. Because their brains heal and change so much over their lifetime, so does their bodies. I look back at pictures and videos of Joey a couple years ago. Pictures of him sitting great and baring weight through his legs and commando crawling, and walking in his gait trainer a lot and fast. These are some of the things he seems to struggle more with now. However, I do know why. A lot of what he did before was because he was frustrated and his brain told his body to get tight (spasticity). You can stand better when your legs are ridged. He would crawl out of frustration. He hates being on his tummy to long. Well he doesn't do this so much anymore, because yes he can roll himself over, or he finds his fist and sucks on it. He doesn't walk so much or so fast in his gait trainer anymore because he is more aware and doesn't like it. Before he did it because he didn't know what was going on. He knows now. He knows if he cries we will pick him up (I need to stop picking him up). As he grows, it is a constant battle with keeping him stretched. His muscles shorten and tighten and then it really makes it difficult to move. His muscles are so tight. There isn't enough time in the day to do all the therapy that he needs to keep his muscles loose all the time. A it is he get about 2 1/2 to 4 hrs of therapy a day.

Kindergarten starts in the fall for Joey. He will be going to school 5 days and almost full days. I will have his transition meeting in the next month or so. I am looking forward to this somewhat. On a more selfish level, I will have a lot of time to get things done. My stress level will drop dramatically. However, Joey will get less therapy and much of his therapy will be in the afternoons after school. He will be exhausted, I don't know how we are going to manage. I hoping to really be able to step up and do a lot of his therapy on my own. I also will also have to find a new PT. We will not be able to travel to LAX area to the clinic where he goes now. Just to far that late in the day (BOO HOO!)

Ok I know I'm jumping around a lot, just please bare with me.

When we get to Costa Rica, Joey will be getting a new type of therapy called ABM at the same time as the stem cells. I have a friend that lives in CO that does this with her daughter all the time. Her daughter is doing so great with it, it makes me jealous and makes me want to be able to do it a lot too. There are no therapist in SO. CAL that does it. I would have to travel up north to San Rafael or down to San Diego, both would cost me about $5000 to go.

As for my other kids. Jessica is doing great in softball. She is a pre-teen going onto adulthood it seems. She stress's me out when it comes to her school work. She is very smart, but very into her social life. I am in the process of planning her Bat Mitzvah, another stress, but with help from my mommy it will be great. Thanks MOM! As for Jack, he is just Jack. He is doing great in school, no stress's there. He is Jeremy Jr., loves the military, loves anything about guns, is a great fighter (Krav Maga) and is a FUNNY FUNNY guy. He is my comedian. I just love this lillte man. We went on a date date the other day. There was a mother/son dance at school. He is very much a gentleman.

I am very blessed to have my wonderful kids and husband, family and friends. I love you all.

Playing Baseball!!!!!!

Ok bad pitcher, PITCHER! hee hee hee

Wheeling into home plate.

Playing second base.

Joey and Jack, What a team

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So much, but so little going on. Ok so this week hasn't been that crazy or out of control, just normal life stuff.

Joey decided to help himself out of his wheelchair on to the concrete the other day. On his way out he hit his head on his chair. At first it seemed like he was going to have a HUGE bump, but after 20 min. of an ice pack he only have a very small bump. He ended up landing on his back. As he fell he got stiff as a dead dog. The good thing about this is that he didn't hit his head because his neck got so stiff, it was like he kept his chin tucked. No injuries beside the small bump on his head. I don't think he is going to try that again soon.

He has been sitting in ABA therapy for 1-4 minutes each time now. He has also been rolling from his tummy to his back in a matter of seconds when asked to do so.

Today was his first baseball game. His brother helped him all day. He played second base for his team and hit a couple of home runs that brought a couple runs in. hee hee hee It was a great game. No losers. The division and people who volunteer to run it are awesome. Thank You all for letting my son play baseball.

In 4 weeks we go to Costa Rica for stem cells. Some good news regarding our trip; The foundation that originally declined financial aid to help is now going to help some. I posted about this in an earlier blog. Also an ABM practitioner is going to also go to CR to treat our kids. There are four of us families going. Gracie, Mackenzie, Brock and Joey

Well that's kind of it for Joey.

My turn to vent a little. So I saw a news video about a 17mth old boy that drowned in a bath tub because the mother left him unattended. After a few weeks in the hospital, being vented and a special new therapeutic hypothermia treatment the child walked out of the hospital. No physical or cognitive issues at all. WHOO HOO! I am thankful that the therapy worked and he didn't suffer any ill effects from the drowning. I am glad another family doesn't have to live my life.

Ok, so this it what pisses me off. The news interviews the family and talks about this wonderful therapeutic hypothermia treatment. The family is also interviewed by other networks and magazines. Not once is anything mentioned about her leaving her child unattended.

So maybe it's just me having a problem. Maybe it's just because I wanted that miracle. I wanted Joey to wake up and be ok. I didn't want him to spend his life in therapy or worry about his knees turning in, his feet not being flat, his wrists not straight, or worry about him not seeing or understanding, or if he can sit or feed himself, or if he will choke when he eats, or what wheelchair do we buy or therapy to spend our money on. I wanted Joey to play in regular baseball and to be in a regular class in school. I wanted that MIRACLE, I WANTED JOEY WITHOUT the DISABILITY.

OK, I feel better now. I shed a few tears and can move on.

I'll do Anything to Make You Happy!

This post is mainly about my other son Jack. He is an amazing little man. He just wants to make everyone happy and laugh.

Before Joey's accident, he would play with Joey all the time. He taught him how to play video games and how to wrestle. He would ride him around on his motorized tractor. They would fight with Jack's swords. Jack would even wake up in the morning and sit in his crib with him until I got up. Jack loved being a big brother. He loved making Joey happy. Well then things changed when Joey had his accident. Jack felt he needed to blame someone. At first he blamed his dad. Then he blamed himself. One of Jack's swords was in the pool and he swears that is what Joey was reaching for when he fell in. No matter how we tell him, or how often we tell him that Joey wasn't reaching for the sword, and that no one is to blame, he still blames himself. Jack was very depressed for the first 1 1/2 yrs or so. He lost being a big brother. He missed Joey terribly. He didn't interact with Joey at all. He wasn't sure about everything. As Joey got better, so did Jack. Finally after about the first 1 1/2 yrs, Jack found different ways to make Joey laugh. That is all Jack needed. So he continues to find different ways to make him laugh. He loves to hold him and cuddle him. He helps him sit and stretch. Joey just loves all of Jack. Joey smiles the biggest when you say Jack's name. When Jack walks in the room, Joey lights up. This has changed Jack. Jack feels like a big brother again.

OK, so all that brings me to this. Joey started baseball and it is Jack who is helping him bat and Jack who is wheeling him around the bases. Jack getting the chance to heal and be the big brother he always wanted to be. It is the best thing in the world to see. Then this evening Jack was eating ice cream and he decided on his own that Joey wanted some. So he got down on the ground and they shared a 1/2 carton of ice cream. Jack laughed every time Joey made a funny face because the ice cream was to cold. When Jack laughed, Joey laughed harder. Jack said to Joey "I'll do anything to make you happy!" and then kissed him on the forehead.

My boys are healing. One physically and one mentally and they are doing it together like brothers should.

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 goal.......to 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 faith.......my 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!

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.

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.

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