Wednesday, March 24, 2010

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.

Saturday, March 13, 2010

Playing Baseball!!!!!!

Ok bad pitcher, PITCHER! hee hee hee
Wheeling into home plate.
Playing second base.
Joey and Jack, What a team
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.

Monday, March 1, 2010

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.