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.
No comments:
Post a Comment