Monday, May 24, 2010

Wonderful Strangers

Yes, we all know that there are special people in the world that will do most anything for most anyone, however we rarely meet these people. Some of these people will even do for others they have never meet. Well I got the privilege to have come across a couple of these people. One of them I was able to meet and the other I have not meet.

About a week ago when I was at the car wash with the boys I met a gentleman who was very curious about Joey. He saw Jack playing with him and started to ask questions. I love when people are curious about Joey and ask questions. Well to make a long story short, he asked how he can help. He owns his own business and wants to get the word out about Joey and the HUGS Foundation. So he has begun to help. He has spread the word on his Facebook and told all he knew about Joey and the HUGS Foundation. Thank you Patrick. Patricks website is

Then a few days later one of our friends meet a very generous man who wanted to help us. He is donating a bird cage to our garage sale and has also donated 4 dozen personally engraved hair brush's for me to sell to raise money for Joey. I have never meet this man, but appreciate him so much. I do not even know his name.

I am selling these brushes for $20.00. I will gladly ship them to you, please add an additional $5.00 for shipping. The back of the brush is engraved with the following "The Journey is Everything" Joey, and on the handle it is engraved with his website. They are very nice brushes. He normally sells them in the stores for $30 without the engraving. You can click on the right side to purchase them.
Thank you to all the WONDERFUL STRANGERS out there.

P.S. Just a reminder, on Wednesday May 26th, the HUGS Foundation is having a dinner benefit to raise awareness and monies. The summer is upon us, so please please think water safety. No child or family should have to suffer the fate our families have to suffer and endure on a daily basis.

P.S.S. Then on June 5th I am having a garage sale to raise monies to buy Joey a gait trainer (walker) and to get him HBOT treatments. The total cost of these two items are about $6200. So if you have items you would like to donate to the garage sale I will love to take them off your hands or if you are up and awake early on Saturday morning I could surely use the help at the garage sale.

Thank you to everyone for your support and prayers.

Friday, May 21, 2010

Swimming with Clothes On!

Tonight I went swimming with clothes on, shoes and everything.


BECAUSE, a parent wasn't watching their child.

Ok, so here's the story. I was at a BBQ tonight. Parents were eating and chatting on one side of the yard 10ft away from the pool. A dozen kids swimming. A 2 yr old playing in the pool on the baja step, no floaties or anything. The child is a big kid. When I first saw the child, I thought he was about 4 and could swim, because mom wasn't near by. The baja step is on the farthest side of the yard with palm trees around it. Very hard to see the area where the child was. I was only planning on being at the BBQ for 30 minutes because I was going to go to temple with Jessica. As we were leaving, I walked past the area where the kid was playing. He was still on the step, but close to the edge. As I got to the back gate, I gave one last glance toward the pool. Child was already under, head was no longer bobbing, hands were barely above the water. I ran the 10 yards yelling "get him, get him". I was in that pool and had the child out of the pool before another adult was there to help (that's how far away the adults were from the pool). Jack was the closest to me because he also dived in. Jeremy helped me out of the pool I was in shock, I began to cry. The mother of the child was in shock and speechless. She started crying about 30 minutes later and then left quickly .

Most of these people at the party know my family and have met Joey. Some of the fathers are police officers and paramedics and firemen (we live in Simi Valley, that's all that live here).

Because of Joey I have become paranoid around the pool. Doesn't mean when I'm around that I'm going to watch your kid for you. WATCH YOUR KIDS! WATCH YOUR KIDS! If you are having a BBQ, make sure the parents know to be responsible and watch their own kids. Doesn't matter how old your kid is. Accidents happen. Kids play rough in the pool. Older kids can hit their heads or can get jumped on. DON'T be one of those people that say "OH it won't happen to me".

This family, this child does not deserve the same fate our family and Joey have endured. This mother and child have no idea that Joey was watching over them tonight. He was their living ANGEL. Through me Joey saved that little boy.

Thank you Joey.

So my one plea to everyone, whether you have kids or not. If you have a pool, don't rely on the gate or the alarm or another parent. Watch your CHILD! Get a lifeguard if you are having a party. Think of my son Joey. It CAN happen you YOU!

Wednesday, May 19, 2010

My 35lb Pack.

I had one of those days.

What kind of day you ask?

One of those days about self pity. One of those days where you feel alone. One of those days where you just feel you can't go on anymore. One of those days that everyone bothers you. One of those days where you are jealous about what everyone else has and you don't. One of those days knowing that no one really understands what you go through.


Let me explain.

Before Joey had his accident. I had plans, I had dreams about my future, I had things I wanted to do in life, I had MYSELF.

As soon as Joey fell in the pool. the universe hit a bump and I fell out of the wagon. Other family members and friends fell to, but they still held on and were able to climb back in. I was never able to get back in the wagon. I had to gather up all my emotional strength and physical strength and had to go on a journey by myself. Well not completely by myself. Joey fell out to. He also couldn't get back in the wagon. The Joey that was traveling with me was severely handicap and had to overcome even more then I would have to overcome. So I'm on this journey with a 35 lb pack (Joey) on my back. My job on this journey is to protect this 35 lb pack., to make sure it was safe and healthy and always happy. It didn't matter so much what condition I would be in, as long as my pack was safe.

During my journey I still had to be a regular wife and mom and friend and family member. The chores still had to be done, the school work needed help, the money had to be made and the bills paid. Decisions about my other kids future and the future as a wife still had to be decided on. However, I did have some help with these decisions. My husband would jump out of the wagon here and there along the journey to help, but he still had his dreams and passions to pursue, so back in the wagon for him.

As I began to take a few steps on my journey, I felt the weight on my back, but the journey was fresh and I had the energy to take off . Slowly as the journey gets more tedious, I began to struggle. However, I have learned to smile and laugh again. So now as I am walking I can laugh and joke. I learned to slow down and enjoy the scenery. I am able to decide what paths are best to take. Each decision I have to make on a new path or to step over or walk around a new boulder is just as stressful as when my journey began. My decisions are solely my own to make. Every once in awhile I see a wagon with family and friends on it. Sometimes they will hop off for a second to pat me on the back and say encouraging things, or give me advice. But what it comes down to is I'm all alone on this journey.

What bothers me the most about my journey is that no one asked me if I wanted to take it. I always felt that I fell out of the wagon. Maybe God thought I was the strong one, maybe I was the one who could handle this better then anyone else in the wagon. As time goes by I learned that I was pushed. I didn't have a choose. Someone made that decision for me. I had to figure it out myself. Everyone in that wagon kept on going. They still had their dreams and hopes for the future. There decisions about the future weren't solely made by the pack they were carrying. They could follow their dreams and if they made a wrong decision or a decision that didn't work out they knew it won't effect the very delicate 35 lb pack. (Now, I'm not talking about a regular family with kids who have regular decisions they have to make about their children or their financial being or their jobs or their regular lives, because I still have to make all these decisions also, I just have to do it with a 35lb pack on my back.) Don't get me wrong. I would do anything and everything to make sure my 35lb pack was cared for perfectly. That it felt loved and was happy and even if it didn't care or realize, that my pack would get all the chances in life to get back on the wagon.

Along my journey with no final destination insight, ever, I began to lose myself. Lose who I was, who I wanted to be, what I wanted to do. With no relieve from the stress and never able to catch up from the tiredness, I have very little left of my self. I don't belief that I will ever completely lose myself, there is always a piece of myself deep down inside the 35lb pack I'm carrying. I also believe that one day as the 35lb pack begins to climb back onto the wagon that maybe he will take me with him and I can have the chance to refocus on myself. That I can pursue new dreams I have. The dreams and passions and future that I once had when I was on the wagon are forever gone. I say forever gone, because my 35 lb pack now gets a say in my future. Even when my 35lb pack gets back on the wagon I still have the job to make sure it is safe and happy. He will ALWAYS need my help in making the decisions about life, which in turn means I will never be able to fully get back on the wagon, however I will settle for just hanging on for the ride.

I am tired of walking, but each day the 35lb pack gives me the strength to keep one foot in front of the other. Some days I even have enough strength to run.

THE JOURNEY IS EVERYTHING! I have to make the best of it, so I keep on trekking.

Tuesday, May 18, 2010

So Many Decision to Make

So much is going on right now. Actually so much is always going on.

Joey had his botox injections last week and everything went great. I am able to really stretch his calf's now. Tomorrow he will get his casts on. He will be serial casted for 4 weeks to stretch his calf's. Then we will be able to get his AFO's (braces) on his feet.

During this 4 week time we got a lot going on, Fundraiser Garage Sale for Joey, Jessica graduates from Hebrew school, school ends, a trip to Idaho and then a trip to Lake San Antonio. Sometime between the trip to Idaho and San Antonio Joey will get his cast off and his AFO's on. This means a lot of work for me and stress for me, but I'm really learning
now how to do it all pretty smoothly. 2 weeks after we return from San Antonio, we are taking a trip to Lake Havasu. We will be there a week. Then Jessica and Jack will go off to sleep away camp the weekend we get home for 2 weeks and I will head to Arizona with Joey for ABM therapy for a week. The day I return from AZ, Jeremy and I will spend the weekend in Las Vegas. Once we return from Las Vegas my schedule will be cleared up, besides some dr. appt's and regular therapy appt's. By being so busy, our summer will go by fast.

Joey will start kindergarten in August and will be in school 5 days a week all day. I have to really make some major decisions about his therapy. We will not have the time to drive the hour down to his therapy clinic. Not sure what I'm going to do yet.

I want to take Joey to do HBOT (hyperbaric Oxygen Therapy), I just have to find time to fit in into our lives. HBOT is a 2 month adventure.

As far as our results from Costa Rica, we have seen some changes. Joey is really trying to use his mouth to suck. He has better trunk control. I am really praying that his eyesight comes around more. The major change is his cognition. He is so aware that he demands attention by crying. So he cries more then he did before. VERY FRUSTRATING (the crying)

All this makes it SOOOOOOO hard to diet. Stress makes me want to eat. Why can't I just take a pill to look like a super model. That would make it so much easier.

Ok peeps, I have posted the flyer to our Garage Sale. Please pass this information around. I would really appreciate it.


Thursday, May 13, 2010

I Made it Through the Day.

I am so exhausted. We made it through the day. It was a busy day. Way more stressful for me then for Joey. Joey just went with the flow.

We were up and out of the house at 7:30 this morning. I dropped Jessica and Jack at school, then off to Santa Monica for Joey's botox injections. Going to the appointment I was very nervous for Joey. I thought it was going to hurt him. He was to get two injections in both calf muscles. Before we left the house this morning I put numbing cream on the sites of the injection. When we got there, the doctors did a quick reevaluation and then he laid across me on his tummy as the two doctors proceeded with the injections. Well he did flinch, but NO CRYING! He was fine, he didn't even get tense. So that was it, he was done. In and out in 20 minutes. He will get his casts on next week.

Then back home for a snack. Grandma Janet came over and babysat Joey as I went to his IEP meeting. So while Joey and Jack and Grandma went to get ice cream. I was in a 2 1/2 hour meeting planning Joey's future in school. The meeting went great. The school is going to get him a stander, new gait trainer, a couple communication devices and a special brace on his hand to help him write. He will be in a special needs class all day except during P.E., recess and lunch. He will be with the typical kids during these times. He will also get educational PT and OT, and he will get adaptive P.E. hours. The vision and speech therapists will also see Joey more hours during the month. As far as medical PT and OT, he gets 1 hr a week of each from CCS. I will be having a meeting with them to see if we can add more therapy time.

I still plan to pursue more PT privately. I still have a lot of thinking about what to do with Joey regarding his PT.

So all in all, everything went great. I am looking forward to kindergarten, however I am still a little nervous. What am I going to do with my days.........ummmmmmmmmmmm! Guess I'll find a little of me again.

P.S. I wrote in an earlier post about our garage sale, so if anyone has items to donate to us that would be great. We could also use the help each day.

Thanks everyone for your thoughts and prayers.

Tuesday, May 11, 2010

The Month of May

The month of May is busy.

Joey has been doing really good since we got back from Costa Rica. He is sitting independently for an average of 5 minutes. His trunk control and head control is much better. He is also using his arms a lot more now. He can grip and release on command. Also again his eyesight has improved. He really watches tv now. It is awesome.

On Thursday I have a couple very important appt's. Joey will get botox in his calf's to paralyze the muscle so we can stretch his muscle to get his feet set in a more natural position. His feet point because of his tone (muscle contractions). Even though we will have topical pain medicine on the area were the injections will be, you know its still going to hurt him. My poor baby. About 2 weeks after this procedure he will get serial casted. Meaning we will put casts on both legs (like if he broke his legs). He will have to wear them for 4 weeks. The first few days of this he will be miserable. I am not looking forward to this. The only thing that keeps me pushing forward with this procedure is that his feet will no longer be deformed. UGHHHHHHHHH!

On the same day I go for Joey's IEP meeting. This meeting, for those of you who don't know, is a meeting with the school to set his plan for schooling and therapy. Joey is entering kindergarten. Why I am nervous about it is because I am going to be asking for several things that the school district doesn't give easily. It will be a fight. I just open it goes smoothly and we can all come to an agreement without to much hassle.

Then on memorial weekend we are going camping with our friends for a little rest and relaxation and a bit of swimming. This is an annual trip. Unfortunately because Joey will have his casts on he will not be able to swim. And boy does he like to swim.

Then for all you who live in Southern California near us, I am having a garage sale. All the monies raised I am going to put in Joey's acct. I need to raise money so that Joey can begin HBOT ($5000) and so that I can buy him a gait trainer/walker ($4100). The garage sale will be June 5th and 6th. If anyone has any garage sale items they would like to donate I will come around with a uhaul that week before and pick up your items. I could also us the help early in the morning if you would be interested in volunteering. We will also be selling coffee in the morning and lemonade and cookies in the afternoon.

I am asking for everyone prayers on Thursday during our appt's.

Thank you to everyone for being so supportive.