2010 TO 2011 HAPPY NEW YEAR!

Goodbye 2010 it was nice spending time with you. I will miss you but plan on spending a lot of time with 2011 and hoping I will enjoy the time with 2011 like I did with you.

Here is a quick recap of 2010

Jessica ended 7th grade and started 8th grade. She played her last season of softball and cheered for the Simi Valley Vikings Football. She studied extra hard this last year for her Bat Mitzvah, which was in October. She did an amazing job and we all had a fabulous time at her party. She officially became a teenager. She really grew into a young lady this year. We are super proud of her.

Jack, boy did JAck change. He went from a kid to a pre-teen. He is now in the 5th grade. He has been working very hard advancing through the Krav Maga curriculum. He ended this year as a blue belt. He also played hard in football. He got to play football in the snow in Utah this year and has become very good at Call of Duty video game.

As for Joey, well he has done tons this year. He graduated from pre-school and started kindergarten this year. In April he went to Costa Rica for a second round of Stem Cells. He also had his first ABM treatment. Joey has traveled to Arizona for ABM and has done 2 rounds of intensive Neuro Suit therapy. He had botox in June and was serial casted for 8 weeks to help get his feet and ankles back into a neutral position. He is slowly but steadily progressing. However, we are constantly fighting with his body. If it is not one thing, it is something else. Always stretching his abductors so his legs don't scissor, and continue to bend and flex his ankles so his tendons don't shorten and his feet will go into neutral. Making sure he bares enough weight on his legs so his hips don't dislocate and make sure he spends enough time on his stomach on the floor so he doesn't get scoliosis. Always making sure he gets enough food so we don't have to put the feeding tube back in. These are all the daily concerns. The concerns that will follow us and him his whole life.

With all this said, it now brings us into 2011. Wow I can't believe its 2011.

All my babies are growing up and it is scary. Jack will be 11 and in Jr. High and Jessica will be 14 in high school and Joey will turn 6 going into 1st grade. I will be turning 23 again and hopefully starting nursing school. As for Jeremy he has refused to age anymore and he will be starting his military training again.

I have many many hopes and wishes and dreams for 2011. Of course I have New Years resolutions, I always do and then I like to see how long I can make it through the year. Longest I ever made a New Years resolution last was about 6 months. I am pushing for at least 8 months this year. So I would like to lose weight and get into better shape. I want to get back into Krav Maga shape. I am also going to try not to cuss so much and try to not spend so much unnecessary monies on stuff I really don't need. I plan on cooking dinner more and making the kids sack lunches more for school. I plan on working on my patience when it comes to Jack and being a nicer person when it comes to my husband. Ok I know its a lot, but I have to try at least. It's never to late to start.

In 2011 we have a few trips planned. Jack and I are going to Virginia for a school project. I am taking a quick trip to Hawaii for my cousins wedding, and the whole family will go on a few camping trips. I am also planning to meet my ND moms again on another retreat in October. The kids will go to sleep away camp again. As for Joey well I haven't decided yet where he will travel for therapy.

Making decisions on Joey's therapy is very stressful. Going on our adventures are physically and emotionally exhausting. But once I get past all this it all is worth it in the end. I know I want to do tomatis again, and IMOT and ABM and eventually Stem Cells (but not this year). So I told myself that I will not make plans until the end of January. I need to slowly ease myself into 2011. But I do plan on doing all these except Stem Cells this year (very expensive and need time to save monies).

This for the most part sums up 2010 and 2011.

I wish everyone a Happy, Healthy and Wealthy 2011.

I pray for all those special kids who need healing. I pray you will all see change this year. I pray that everyone sees a little more money in their pockets and a little less stress in their minds.

Give extra HUGS and say extra "I LOVE YOUs" this year.

HAPPY NEW YEAR!

Standing on My Own Two Feet

I like to make my mom think that I am not progressing and then BAM! I pop this out and she cries and I laugh inside.
Just keeping you on your toes mom.


P.S. My therapist is just balancing my upper body. I'm doing the rest.

YOU ARE NOT SO SPECIAL

During this time of the year, my biggest pet peeve is that much more prevalent.

The abuse of Handicap parking spaces and handicap access, people that have NO consideration for the handicap.

On Thursday before the rain hit, we took the family to Disneyland. Joey just loves going on the rides, and yes he can go on all of them. Because Joey is in a wheelchair, most of the rides we have to go through the exit which is wheelchair accessible. I have seen tons of groups where the handicap person sat off of the ride, but the rest of the family used the pass. CONSIDERATION PEOPLE.

We also only have one option as far as taking the tram from the parking lot to the park. We have to stand in line with everyone else, but in the handicap line where they can only get 2 wheelchairs on the tram at a time. The rest of the family has to stand in the regular line. I have no real problem with this EXCEPT for the people who think because their baby is sleeping and they don't want to fold there strollers that they can use the ramp area also. They still have to take their kid out of their strollers. So now we wait longer. As my kid is now crying because he constantly needs to be moving to not get sensory overloaded. As I am talking to the tram attended about the people who feel they can abuse the system a man pushing a stroller with his 3 yr old son in it comes up the ramp. The man clearly does not look disabled and the kid does not look disabled, but I don't know their story so I don't judge them. Well the man hears me bitching about the situation and jumps into the conversation and says he totally understands and hates when people take advantage of it. Well of course the man continues to talk and during our 15 minute wait I find out that the man and his kid are not disabled, it is is wife that is and the wife is not even with them. So before we get off the tram, I open my big mouth and say again yeah I really HATE those people that use the wheelchair access because they have a stroller, as I look at his stroller. He did not get the point and said again how he understands. UGHHHHHH!

OK, then there is the handicap parking spots. If you are disabled and have a car, not a van and have the option at the time to park in either of the spots, DO NOT PARK IN THE VAN SPOT! Really people, REALLY! Where are the people with the handicap vans suppose to park. That space is there for a reason. Think people THINK. If you are disabled and are going to walk the mall then obviously you can walk for awhile, then park 2 spots over in a none handicap spot and let someone that really needs the spot use it. I do this all the time because my HANDICAP VAN opens in the back.

If you are driving a person around that is handicap and the person is going to sit in the car and wait for you, then be considerate and DON'T use the handicap spot.

Oh and what about the people that see you pushing a screaming child in a wheelchair with one hand and carrying a tray full of food with the other hand, BUT doesn't offer to open the door for you or move a chair out of the way or even just to help, but instead look at you like you are a horrible mom for letting your child scream. My hands are full, what am I suppose to do. So thank you to the one kind lady and her daughter, out of the hundreds, that offered to help me . I really appreciated it.

OR

As I am in the bathroom with Joey and he is screaming because the sound of the hand drier freaks him out, the lady that is drying her hands sees Joey screaming and looks over and says "whats wrong?" I said that the sound of the hand drier hurts his brain, she goes "AWEEEEEEEE" and continues to dry her hands. There are paper towels right NEXT TO YOU LADY!, but I didn't say it, wanted to, but didn't, she might not have realized that she wasn't as special as she thought.

It is not cool to think you are special and can use the handicap spots or access when you are not handicap, or when you don't really need to use it. I use to be one of these people. Obviously, I am not anymore. My SIL changed my ways a few years ago. She said to me "You are so lucky you can use the handicap spots anytime you want." I said, "You want to trade. I'd rather not be so LUCKY." I guess though that I should feel good because I am lucky that my kid is disabled, that my kid can't talk or play like other kids. WOW, I am LUCKY!

So to quickly reiterate. YOU ARE NOT SPECIAL ENOUGH TO USE THE HANDICAP SPOT OR HANDICAP ACCESS!. If you are handicap yourself, please take a second to think if you really need to use the spot or access.

Keeps Going and Going and Going!

December has started off with a bang. As soon as Thanksgiving was over and we cleaned up from our camping trip, we moved onto the next event.

On December 2nd, Jeremy, Jack and I where off to Utah so Jack could play football in the snow. We drove to Las Vegas, then Utah and then back to LAs Vegas, then home, all in 4 days. We had a great time and Jack's team won. However, these trips are not so easy to plan, because it is always hard to find someone that can watch Joey. This time though it worked out great, thanks to Ashley and my stepmom.

During my time away Joey called out to me twice, "MOM".

Joey then had a great week at school. We had to meet with the CCS medical doctors for our 6 month evaluation. This is to make sure he still gets his therapy during school. The doctors noted big changes such as his ability to stand unsupported (even if only for a few seconds), and his ability to sit independently for a few minutes. His range of motion in his legs and arms are also much better.

During our time waiting for this appt., I asked Joey for a kiss and ever so softly he said "No". I then said "come on one kiss", again he said "No". So I then just took my kiss. The cool and exciting thing about this is that the "No" sounded perfect and his response time was so quick each time.

As for the rest of the week , on Wednesday and Thursday when I dropped him off at school he called out for me again, "MOM". Of course I have never heard him say it, but once when he was mad.

As for me, well I was holiday shopping and getting ready to have a spa weekend with the ladies. That brings me to today, Friday. Jeremy took the kids to school. I was off to Moorpark College to take a 4 hour test for the nursing program. I was very nervous because I haven't been in school for a long long long time. Good news though, I passed the test and did it in only 2.5 hours. After packing my bags and picking up the kids, Jeremy tells me he is in a lot of pain and has to go to the hospital. Turns out he has several kidney stones. One is making it's way out while the others are laying in wait. So there goes the spa weekend with the ladies. I will have to wait till next year. Boo Hoo, but Jeremy is feeling better, he is on a lot of pain medication.

As for the rest of December, we have a Hanukkah party this weekend, then 2 parties next weekend and a lot of Krav Maga training. Xmas and New Years, and I'm not done shopping yet.

Oh Yeah and be careful when eating Hot Pockets. I had one yesterday and the cheese leaked out and burned the crap out of my chest. I have a quarter size burn with blister on my chest. It really hurts. OOOOOOOOOCH!

GREAT NEWS!

GREAT NEWS! FAITH IS WALKING!

For those of you that don't know faith, she is my niece.

In April 2008 my sister Suzanne, her daughter Paris, my mom and I flew to Guatemala to welcome my sisters new adopted daughter into our family. We were all very excited to meet Faith. We waited for her for about a year. We sat in a special hotel room on pins and needles waiting for her foster mom to bring her to us. She was 11 moths old. Then the moment came and Faith was put in my sisters arms. I have to say that there was a lot of mixed emotions. We were excited, nervous, confused and had a lot of questions. Like I said Faith was 11 months old. At 11 months old a typical child should have been sitting up on their own, crawling, holding their own bottle, babbling, well Faith was doing none of these. Before I go on about what Faith could do I have to tell you this; When my sister applied to adopt a child she wanted a healthy child. Guatemala is known for having the healthiest kids when adopting out of the USA. She even had a chance to visit Faith when she was about 6 months old.

Ok, so Faith was not a typical child. She was the size of a 2 month old. Could barely hold her head up. She didn't like to be touched, still drank out of a bottle and still woke up numerous times during the night. Loud noise and bright lights were to much for her to handle. She didn't like to touch anything with her hands or feet or mouth. When we got back to the states my sister started on a very similar journey that I was on with Joey. She took Faith to many doctors to figure out what was going on with her. Turns out she is just severely delayed. Maybe from the RSV she got when she was 8 months old, or maybe malnutrition during birth or during the time she was in foster care. We will never really know. My sister began taking her to therapies after therapies. She quickly began to improve.

Over the last 2 1/2 yrs Faith learned to sit up by herself, crawl, play with toys, eat baby food, eat regular food, she began to touch with her hands, and she even says a few words. She went from a 2 month old level to about a 1 yr old level. I know that this doesn't seem like much, BUT it is HUGE. Of course like any mother you want your child to have the best quality of life and want your child to be as typical as possible. For Suzanne, she wants her daughter to be able to walk. Well today she did. She held onto a walker by herself (this in itself is huge because she has a major sensory disorder), she bared weight on her feet and legs ( again huge because of the sensory disorder and the dislike of touching things), then she began to walk all over her therapy center. This is the first step of her walking independently. She is on her way. Way to go Faith! You can see a video of Faith walking by either going to my sisters or my facebook page.

So to slightly change the subject, I had a dream last night. The dream was about watching Joey take his first steps in a walker like the one Faith was using. I have had this dream before, but what was different this time is that I could not see Joey's face in my dream. So once Suzanne told me about Faith walking I realized that the dream I had was not about Joey, it was Faith walking for the first time. Of course right away I got sad for myself, BECAUSE I want to know that Joey will walk like Faith did. BUT one thing I have learned on this journey is PATIENCE.

All of us parents with special needs kids have once said in our child's lifetime " I wish my child could do.............". Then our child does it and as time passes you kind of forget the time when your child couldn't do it and you wish for something else. During all this time of waiting and wishing and praying, we learn patience, we learn understanding, we learn acceptance, we learn about hard work, we learn appreciation of life and of others and we learn more then most people learn in a lifetime. We learn that we might not see the big miracles that we are wishing for, but will see the other miracles that lie underneath, the miracles that are not visible to the eye.

So even though I am still sad that it wasn't Joey in my dream, I am overjoyed that my niece is starting to walk, that her quality of life has just improved dramatically. I am glad that one day my sister will think back to the time before Faith could walk and that she will barely remember those times.

Keep going Faith, and going, and going, and going! You have come an amazingly long way. We love you so much.

Faith when she was handed to my sister.

Faith today

A Happy Thanksgiving

Happy Belated Thanksgiving!

Again this year we went camping for Thanksgiving. This is our 7th year camping over Thanksgiving. We go with about 6 other families, these are our best friends. We have a fantastic time.

Normally when we go camping we do not take Joey with us. He doesn't like it much and it doesn't give us time to relax. Joey is like a 6 month old baby. He has to be on a schedule, diapers changed often and fed every few hours. However we do take him every Thanksgiving. He was actually much better this Thanksgiving compared to the last 3 years since his accident.

The holidays are still hard for me. As time goes by it gets easier, but it still stings. It is hard to see the other little boys his age running and playing. It is hard to see these little boys riding their bikes and climbing trees and watching their favorite movies or playing games with the other kids. It is hard to hear the other parents talk about how their lives are going to get easier as their kids get older and they don't have to chase after them or watch them as much or make their food for them, etc. etc. etc. It is hard knowing that as their kids get older and become more independent that I will ALWAYS have that child that will depend on me 100% for EVERYTHING.

So then I start dreaming about what life would be like to be one of those moms, to see her child playing and riding their bikes, BUT I quickly shake it out of my head and begin to think about what I can do for Joey. I want Joey to be able to take a bike ride. The bike to do that costs $4500. Ok, then what about a bike trailer to take him on a ride, $800. Then my mind starts thinking about the therapies that I would like to do with Joey, more Stem Cell Therapy $30,000 and Neuro Therapy $8000. Maybe even more ABM, $1500. Then of course I start thinking about the things I would like to get for Joey, a new feeding chair (he has outgrown his current one) $600, a talker (not sure what these cost) and so many other adaptive toys.

So by this point my mind is going crazy with everything involving Joey, (school, daycare, therapy, adaptive toys and many many more things). So I have decided that today is the last time I am going to think about all this until after the Holidays when I have more time to be rational about it all.

So Happy Belated Thanksgiving to everyone. Hope you all had a great time. Be safe over the Holidays.

Blessings Always.

Normal

I have thought all day about what to title this blog post. I have even thought about how to start and what exactly to say. I finally figured it out.

NORMAL

WHAT IS NORMAL? Who is living a normal life?

I am living a NORMAL life.

For the last 3 1/2 years since Joey's accident, I have constantly said "I wish my life was normal". Well after this weekend I realized my life is normal. This last Friday I got on a plane with Jill and Peggy. Jill is mom to Seth who had his near-drowning 8yrs ago. Peggy is Jill's mommy. We flew to Seattle, WA to meet up with and spend the weekend with 9 other mommies who have children that have had a near-drowning accident. 12 of us total.

Over the last 3 1/2 yrs even though I have talked to many different mommies through email or more recently through facebook, you still feel most days that you are alone on your journey. I have always called it a journey because I have never felt like it was a normal life to live. WELL, this weekend changed me a lot. For the first time ever in the last 3 1/2 yrs I have felt normal. I sat in this HUGE house with 11 other mommies and we laughed and laughed and laughed and cried, then laughed some more. We talked about our lives, our feelings, our struggles and our happy times, we prayed and sang and cheered, we held each other and just sat and listened. Even though all our kids are at different levels of healing and different levels of disability and all our stories of how we got here are somewhat different, we all felt the same. We all have experienced the same emotions. No one judged the other. You never had to explain your life. We all understood. We all were on the same path, the same journey, the same NORMAL. Being with all these mommies I realized that we lived normal lives. Normal because we have all been were the other has been. Normal because it was comfortable. Normal because we all understood each other. Having the 12 of us women in the same room made my life NORMAL.

I want to send out a few special thank yous; Thank you to Sue S. who organized and planned our whole weekend and Thank you to Tiffany V. for letting us stay at her house. Also Thank you to Amy S.(Sue's daughter) and Yoli (Sue's Best Friend) for cooking and cleaning for us all weekend. And Thank you to all of Sue's friends who volunteered their time and donated monies to make our retreat all it was.

I will miss you all, but will see you next year (hopefully). This weekend really changed me more then I ever imagined. Thank You Mommies. I LOVE YOU!

Jessica's Bat Mitzvah

This Saturday my oldest turned 13 yrs old. She had her BAt Mitzvah. She did a fabulous job with her service in the morning and then partied like a rock star that evening. Her are some pictures.

Joey and Jessica

The decorated room. Well half of i.

Me, Jessica and her friends. I'm the cute blonde in the middle. J/K Ok so that cute blonde is Jessica.

How Much Does Joey Understand?

This is the BIG question. How much does Joey understand? I know I have talked about this before, but many of the days we forget.

Everyday Joey does things (very small small things) that show us he understands what we ask of him. These things are so small, yet very consistent that sometimes we question ourselves about how much he really understands. Then every once in awhile he really impresses us with something new or something BIG.

He did this yesterday. When I went to pick him up from school, the teacher had a talker in her hand. She said to me, "Joey has something he would like to say to you." The teacher puts the talker in front of Joey and says to Joey, "go ahead tell her". He then lifted his arm and hit the button. The talker said, "Hello Mommy". He was so proud of himself that he started laughing and then kept hitting the button. Some of you might say "SO, he hit a button". Well normally he would not reach out and touch a button unless you said, "Joey can you reach, reach and touch the button, come on Joey reach, touch". I brought tears to my eyes, reminding me that Joey is there and does have things to say.

Well that was just the start of him impressing me. During his behavioral therapy he impressed me more. We had him in his gait trainer. We are trying to encourage him to walk, but not just walk, walk on command. So at first when we put him in he would take a couple steps. We would reward him with a bit of pudding. Then we started to ask him to take a certain amount of steps (ie. 2 or 4). He would then take the asked amount of steps and stop, then open his mouth and say "UMMMMM", for more pudding. We did this numerous times. Then we decided to step it up a bit. We said if he could walk all the way across the room then he could be done walking and could finish his pudding. So what did he do, he turned his walker around and moved his feet as fast as he could all the way across the room. He reached the end and again stopped, opened his mouth and said "UMMMMM".

I think he likes to keep me on my toes. He wants me to think that he doesn't know much and then BAM! Just reminding me that he is a typical 5yr old inside that brain of his.

I Love You my little man.

New Normal

I am sitting here tonight watching the 33 miners being rescued and boy does it bring many emotions.

When the miners first got trapped and for the first week or so we all sat and watched. We prayed for them and their families. Then we moved on. We somewhat forgot about them because we had our own lives to live. Many of us probably didn't even think what happened to them. Possibly just assumed they were rescued or maybe forgot about them all together. I was one of those people. I forgot about them. Didn't even cross my mind. I moved on with my own life with my own tragedies.

I remember when Joey had his accident. That first day and even that first month everyone was around. It seemed to me that every ones lives around me stopped too. As the second month passed, then the third and fourth, then the first year went by I noticed others around me moved on with their lives. I didn't understand. Why did their lives move on the same way, but mine didn't. Inside I was soooooo mad at everyone. Mad that they got to continue their lives the way they were before my sons accident and my life was still at a stand still. WHY??????

Well I see now. It has been almost four years since Joey's accident. Yeah I know, FOUR YEARS have gone by. My life has found a new normal. It took about 2 years for me to finally move on in life. It was a very painful 2 yrs and most of the time I felt alone. There seemed to be only a small group of mothers who went on the same journey with me who understood.

Today as I sit here and watch the miners being rescued, I watched them hug their families and feel so relieved. Relieved that they get to find a new normal in their lives. AND it makes me feel angry with myself that I was one of those people that moved on with my life at the beginning. Makes me angry that I was mad and upset at the people around me 4 yrs ago that moved on with my life.

BUT today I understand and I am sorry. I'm sorry I don't stop more often and think about others. I am sorry to those that always supported me, sorry to myself for how I felt.

I pray all the miners make it out safe and I pray that it doesn't take to long to find their new normal.

The GOING On's.

Where do I begin without repeating myself too much, ummmmmmmmmmmm?

It has been 5 weeks since school has started for Joey. The first week was rough, new teacher, new aid, new classroom, but now 5 weeks into school Joey is doing great. I had a meeting with Joey's teacher this last week to make sure he was getting what he needed in school. I showed the teacher his ipad, which they are going to start to use. The teacher is also going to ask the school district to get one for Joey in class. He is making a lot of friends and having a great time. He also went on his first field trip. He went to the fair and he took his first bus ride.

Joey also started a new therapy clinic. His therapist is great. After 6 weeks of working with him, she has got it down. His ability to sit with no support is progressing nicely. He sits for an average of 2.5-3 minutes when you just sit him with no stretching or prompts, however when he is stretched and prepared, he can sit any where from 7, 10, 14, to 18 minutes. At therapy last week he sat on a platform swing for 3.5 minutes without falling over. The swing was moving the whole time. He is also starting to really bare weight through his upper arms and elbows. He is talking a lot, no real words besides 'I go', but you can ask him a question and he will babble away. He really loves his music, he wants it playing all the time, he will get fussy if it is not on.

Besides the PT he receives at the new clinic and the therapy he gets at school and behavioral therapy at home he is not receiving any other types of therapy right now. We are taking a break for traveling everywhere. It has been good for the whole family.

As for the rest of us; Jack has been playing football and Jessica cheerleading. Jessica has also been studying really hard for her Bat Mitzvah in two weeks. Both kids have been doing really great in school. Jeremy is working hard and I am finally getting time to do stuff without the kids.

I have posted some pictures and video's here, but will also post more on the following website; www.dropshots.com/fightingjoey

De-Stressing! Or Trying at Least.

De-stressing!!! WHAT, really, what was I thinking.

School has started and we are 1 1/2 weeks into in. Joey is doing great. They are still getting use to him and he is still getting use to them, but things are going good. Next week I plan on visiting and talking to his therapist and the teacher about the amount of time he is in his wheelchair. I think they have him in it to much. That WILL change.

Joey has started a new therapy clinic this week. It is just physical therapy. He has a new therapist. I know it will take a few weeks to get use to each other, but I'm inpatient and can't wait. He will go 2x a week for an hour. We are no longer going to the NAPA Center on a regular bases because of school and the drive. I already miss that place. It makes me nervous that Joey will regress not going to therapist that know what he needs. I am going to try and take him there on days off of school and he will also continue doing intensive therapy there when we can.

I told myself that I was going to give myself and Joey a break on doing extra therapies. I thought that by giving us a break that it would give me a chance to de-stress a little and relax. WRONG! All I can think about is what other therapies I should put Joey in. What therapies does he need to help him? My mind is nervous that by taking a break Joey will regress. I continuously say to myself, "As long as he doesn't regress I will be happy", however it is so hard to keep convincing myself of that. So in turn, I am not de-stressing, I think I have only made it worse. With that being said, I am looking into Occupational therapy and massage therapy for Joey.

Another thing I struggle with is his progress and other kids progress. I know and boy do I know that ALL kids are different. I also know that I should be happy that Joey can do this or that because other kids can't, but deep down inside I'm not 100% happy. I want Joey do be able to see and track. I want him to be able to reach out and use his arms to read and play games on his ipad and feed himself and point to things and so on and so on. I just want the best quality of life for him.

OK, I'm done being depressed. I just had to get it out.

Now on to the things Joey CAN do. He can sit for an average of 3.5 minutes, but has sat for 10-18 minutes over a dozen times. He still eats like a horse and he walks great in his gait trainer. His eyesight has improved dramatically. I am going to take him to the Center for the Partial Blind to get therapy for his vision. Oh and not to forget, but Joey has the best smiles and the best laughs.

1st Day of School

So I know I wrote earlier about the 1st day of school, but now that we are at the end of the day I have more to tell.

All went pretty well dropping all the kids off this morning. I was able to go to the gym and get some work done. YEAH! At 1:00 I went to get Joey. I could hear him crying in his class room. He was screaming. He screamed in the car the whole way home and screamed in the house. It took me 30 minutes to calm him done. The teacher said he wasn't very happy all day and he didn't want to eat. WHAT? Joey always wants to eat. That's his favorite thing to do. So I think I figured it out. He had snack around 10 and then lunch was at 11:30, so he might not have been so hungry, also it was 102 degrees today. His class room was also very loud and crazy with the new kids and the staff getting organized. When I got him home he drank over 8oz of water. He usually doesn't drink this much in a 30 minute period. So he was a bit thirsty. Then I fed him the rest of his lunch. He couldn't eat fast enough. So I think I am going to stay at school most of the day to help get them familiar with Joey.

OK so my stress level only built from this point on. I had to cancel his HBOT today because I had to go into work last minute (one of my employees called in). Well I didn't have a babysitter today so my daughter had to deal with the fussy boy. Then of course I had to come home and make dinner, lunches and clean up the house and help with first day homework. Boy do I HATE homework! So because I missed his HBOT today it means I have to continue next week. I was really wanting to be done this week. It is very exhausting. On top of this all, my handicap van is in the shop and I had to take apart his wheelchair each time I put him in and out of the car. Uhgggggggggg!

Now all kids are sleeping and I'm about to turn the lights off. Good Night everyone.

WOW! Where did the summer go.

I survived another summer.

Originally this summer was suppose to be very relaxing and none stressful. Well that's not how it ended up working out. We went on several trips this year, some with Joey and some without. We visited family in Idaho, went to Lake Havasu, then off to Arizona for therapy while the kids were at sleep away camp, and took a Las Vegas trip. In August the kids started football and cheer leading, while I was off taking Joey to HBOT. This is actually our last week of HBOT. We will have completed 30 dives which brings us to a total of 239 dives.

Jack and Joey sleeping in the car.

Joey's First Day of Kindergarten

Today is a great day. The kids started school. Jessica is an 8th grader, Jack is in 5th grade and Joey has started kindergarten. I walked Joey into school (ok wheeled him in). Gave all the instructions to the teacher and his aid. Then I went searching the school for his gait trainer and stander that should have been in by now. Back in June the school ordered him the gait trainer and walker and I also order him a gait trainer for home. Well when I went searching the school I found the gait trainer for home. The gait trainer for school is still in the school warehouse (go figure right!) and we are still waiting on the stander. So in the meantime he is using the one from home. His preschool teacher was in his class also this morning filling in the teacher and aid about Joey. I just loved his preschool teacher, wish she could be his teacher in kindergarten also. I then gave my big boy a big kiss and off to the gym I went.

FREEDOM!

My new license plate

Busy Summer!

Every year I say to myself, "I can't wait for SUMMMMMMEEEEERRRRR". I love summer, however I think I forget that summer is just as busy as the rest for the year, but with no break from the kids.

Our summer started out with a 20 hr drive to Idaho for a week with me, the boys and my mother-in-law. Then home for a week and then off to Lake Havasu with the family and great friends. Joey stayed home for this trip. We came home from Lake Havasu to clean clothes and then off we go again. The kids went to sleep away camp for 2 and 3 weeks and I took Joey to Arizona for a week of ABM therapy. Arizona was a great trip. I was there with 2 other wonderful families. The therapy is also an amazing therapy. As for Joey though I have mix feelings. ABM reprograms the central nervous system, muscular and skeletal system. So it makes Joey irritable. Joey's ATNR becomes worse, he stops eating and his sleep changes. It took about 2 weeks for his brain to relax and for him to get back on a normal schedule with everything. It was miserable for about 1 week of this transition. I did notice though that the ABM made him more cognitively aware and his eyes seem to focus more. So I am conflicted as to whether we do this again or not.

We returned on a Thursday from Arizona to start his 40 sessions of HBOT. We drive 45 minutes away 6 days a week until we complete 40 session. Some of the days we then also have to head an hour and a half in the opposite direction after his HBOT to do physical therapy, and then back to HBOT. I'm exhausted just thinking about it. HBOT is not a relaxing therapy as one might think it to be. Joey moves and squirms the whole time. He fusses and cries and just wants to be done. Thank god my babysitter Ashley takes him once a week or so to HBOT.

Now the other children are home from camp and chaos has begun again. Football practices and cheer practices, therapy, registration for Kindergarten and doctors appointments. Work meetings, dog trainers, lost bunnies, amusement parks, LAS VEGAS BABY! and bat mitzvah planning. Dress shopping, school shopping, decisions on school for me, wow, it just goes on and on and on.

So to sum things up, amongst our busy summer schedules, Joey is still making progress. His eyes are coming around even more and he is cognitively more aware. He laughs and talks all day long.

Dreaming of a Better Day

I guess you don't realize how good you have it until it starts to go away.

I'm in a rut. Well I guess that is what you would call it.

Joey has a reflex called ATNR that affects his whole body. The definition of ATNR is:

The asymmetrical tonic neck reflex (ATNR) is a primitive reflex found in newborn humans, but normally vanishes by the child's first birthday. It is also known as the "fencing reflex" because of the characteristic position of the infant's arms and head, which resembles that of a classically trained fencer. When the face is turned to one side, the arm and leg on the side to which the face is turned extend and the arm and leg on the opposite side bend. In children with cerebral palsy, the reflexes may persist and even be more pronounced. As abnormal reflexes, both the ATNR and the TLR can cause problems for the growing child. The ATNR and TLR both hinder functional activities such as rolling, bringing the hands together, or even bringing the hands to the mouth. Over time, both the ATNR and TLR can cause serious damage to the growing child's joints and bones. The ATNR can cause the spine to curve (scoliosis). Both the ATNR and TLR can cause the head of the thighbone to partially slip out (subluxation) or completely move out of the hip socket (dislocation). When abnormal reflexes persist in a child, early intervention involving extensive physical therapy can be beneficial.

Ok, now you know what I am up against. Over the years since his accident, his ATNR has gotten so much better. It was only affecting him when he was really really mad, he could become irritated, but it wouldn't affect him. In Arizona during ABM, he starting showing the ATNR all the time. Even with very slight irritability. He goes into ATNR almost 50% of his day now. He is in slight pain when he goes into ATNR, it twiks his whole body. He also has a startle reflex. this has been more persistent, but not to bad. Now that we are home he is still having very bad bouts with his ATNR. He is also not eating much. If any of you have seen Joey eat you would understand that eating is Joey's favorite activity. I am having to force the food down him during lunch and sometimes during breakfast. Ok and to top it off he has decided to change his bed time. He use to go to bed at 8:00p, you just laid him down and night night he went. If it was up to him, he would stay awake till midnight. I have been putting him down between 9-10 and letting him cry. He will scream bloody murder from 30-60 minutes before he falls asleep. This is a heart breaker for me, but it is the only way he will fall asleep.

So some people have suggested that maybe Joey is sick or something. No that is not the case. The ABM reprograms his nervous system and messes with the brain. His brain just has to integrate all the information he got from the ABM sessions. Last time we did ABM it took a few weeks for him to get back to normal. The good thing about the ABM is that is eyesight is much better. He is also cognitively better.

All this does not make for a happy mommy. It is very hard to see your child not happy. I want to head back to the gym and want to diet again. I want to go meet my friends and talk on the phone. I want Joey to just be happy and not irritated all the time. So what do I do when I'm in a rut, I EAT! I can't help it food loves me, I love food. I get every depressed. Guess I just have to ride it out and know that this is not the worst he has ever been.

Currently we are doing HBOT. We head out to Ventura, a 45 min drive, everyday, sometime 2x a day. Right now I'm ok with it, I'm sure I will so been tired of the drive soon enough. My babysitter is going to help and take him some of the days to give me a break.

I also miss my other 2 kids. They are at sleep away camp and will be home on Saturday.

Well enough of my moaning and groaning. I am going to sleep now and going to dream of a better day for Joey and I tomorrow.

Anat Baniel Method (ABM)

We are finally home. Seems like I haven't been home in weeks. During the week of July 17th, I took Joey to Arizona for ABM therapy. My friend Pam from Colorado joined us with her whole gang, 1 princess and 3 boys. We had a great time hanging out. Joey went swimming a lot and got to play with the boys, which he enjoyed tremendously. I also met a new friend from Yuma, AZ, Michelle and her son DJ, who has Autism. I learned a lot about autism this week. Most important thing I learned is not to refer to the child has being Autistic, but to say he has Autism. (hee hee hee, inside joke, love ya Michelle)

Anyways, Joey received 2, 1 hour sessions of ABM a day for 5 days. At first I didn't notice any changes, but over the last couple days I noticed his eyes are focusing more. We now take a week break of physical therapy, start HBOT on Monday for 40 sessions and then school will start on the 25th of August. After about 6 weeks if I see significant changes, I will plan another trip to AZ, probably around x-mas break.

Pam and I made a video of one of our days in Arizona, I guess you can say it is a vlog. Here is our vlog of 1 day in Arizona.

ABM Vlog from makenziesmiracle on Vimeo.

My other 2 kids are at sleep away camp for one more week, so it will be nice and quite in the house, with very little mess. Whoo Hoo!

OK, time to start my day. Talk to you soon.

Summer Vacation

I thought vacations were suppose to be relaxing. Well I'm sure they are, however I'm not on vacation yet, so the stress level and craziness is high.

On Saturday we leave for 5 days to Lake Havasu, we get back on Thursday and then Joey and I leave on Saturday for AZ and the kids leave for sleep away camp on Sunday. I have a lot of preparing to do. Not only do I need to finish packing the RV and head to the grocery store, Joey has therapy, Jessica has tutoring and Ortho appt. and Jack has uniform fitting for football. Then Jessica and Jack both have a doctors appt. next Friday and I also have to take my minivan in for repairs. Amongst all this I have to figure out what is going on with the invitations for Jessica's Bat Mitzvah, finish getting address's ready, finish her montage and sign in book and do a lot of work for our kids program at work. Oh and I can't forget about getting the Rx and insurance info and therapy evaluations to the new therapy clinic for Joey. WOW I'm exhausted just thinking about it.

OK enough about my craziness. As for Joey, he sure has changed a lot over the last 3.5 years. He has grown a ton and is the size of an average 5 year old. He moves constantly and babbles non-stop. His sleeping patterns are always changing and not for the better either. He has decided now not to go to bed till about 10:30 pm and wants to fall asleep in daddy's arms. What am I going to do when Im in AZ and daddy is not with us.However his appetite is the same. He weighs about 37 lbs now. His casts are off and his braces are on. His feet look great. Insurance and Medi-cal have finally approved Joey's gait trainer (walker), so now he will have 2 of them. One at school and one at home. I am very excited about this. He can walk up and down the street now. I can take him to the mall so he can walk. WHOO HOO!

I bought Joey a cool floaty for the pool this summer. It goes around his neck to keep his head above water. He is able to kick and use his arms to swim. I don't even have to hold onto him. He loves it. We spent about an hour in the pool on 4th of July. He was so relaxed. I love it.

As for new changes in Joey since Costa Rica stem cell, weeeeellllllll? I have seen improvements, mostly with his mouth and his sucking. His body is much looser and his arms are more functional. I don't think he has hit a plateau yet in improving from the CR SC, but the improvements are so little at this point, it is hard to say what I see. Overall his body feels and looks awesome. In August Joey will start his HBOT. This will help the stem cells function. He will also start kindergarten and a new therapy clinic. This I am nervous about, the new therapy clinic. We have been with the same 3 therapists for the last 2 years and they are incredible with Joey. I just love how they work with him. They know what his needs are for each particular day and they know what he needs to improve. It will take the new clinic months to figure this out. I will however save money and miles with not have to drive so far for therapy anymore. So there is a plus in all this.

Well it's time to get up and start my day. Have a great day everyone.

Forgetting What to Say

Where do I start. I feel that so much has gone on in the last couple days with Joey, but for some reason I have forgotten what I wanted to write about.

Lets see. Sunday we had a little bday party for him. That went great. He got a lot of nice gifts. Monday he got his casts off and his new braces on. On Tuesday Joey went back to therapy after missing a week due to our vacation in Idaho. Usually he is really stiff and it takes us a week of PT to get him back to normal, but that is not the case this time. He is very loose, way looser then ever before. Today I took the boys to the movies to see Toy Story 3. Joey loved it. He talked the whole time and ate a half bag of popcorn and m n m's. Joey is also in summer school/camp 3 days a week for 4 weeks. He really loves playing with his friends. Tomorrow Joey has 2 dr. appts. One for HBOT and the other for his braces.

Oh I know now what I wanted to say. I got a call from the mobility company. They finally got full approval from my insurance and medi-cal to order his gait trainer. We will place the order next week and it takes about 6 weeks to get it. I am so excited about this.

On Sunday we are going to a friends house for the 4th. I am very excited because they have a pool and I got Joey a new floatation device. I can't wait to use it.

Ok well I know I have more to say, but I'm drawing a blank. I'll blog more when I remember what it is.

HAPPY 4TH OF JULY!

HAPPY 5TH BIRTHDAY JOEY!

5 years ago today I gave birth to my third child, second son, Joseph Andrew Stafford. Today that baby has turned into a big boy. He is 5 yrs old today. Were has the time gone. 5, he can't be 5, really he is 5, OMG he's 5! He even looks 5. I think he grew over night knowing he was turning 5 today.

So much has happened in the last 5 yrs. He learned to talk twice and sit up twice, laugh and smile twice. He is learning to walk for the second time and learning to give kisses and hugs twice again. He has gained weight and lost weight. He has grown in so many ways. Even though he is a big boy now, he will always be my baby. Ok so I'm done dealing with diapers and feedings, but if that is what is keeping him my baby I'll take it.

Yesterday we had a family birthday party for Joey. We had hamburgers and hot dogs and a chocolate toy story bday cake. Today will be his first day of summer school/ camp. He will go for the next 3 weeks on Mon./Wed./Fri. half days. Ok, so im using this as a little babysitting time, but he does love all the kids and laughter and music.

HAPPY BIRTHDAY JOEY! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR JOEY! HAPPY BIRTHDAY TO YOU!

Joey's Bday Party

Today we had Joey's B-day Party. It was just a family thing. It turned out great. All his grandparents came, his aunts and uncles and all the cousins. He had a chocolate Toy Story b-day cake, and got some nice presents. Thanks you to all my family for coming and celebrating today with us.

Also today my 8 yr old nephew had his championship all star game for baseball. He told his mom earlier today that he was playing the 2 games today for his cousin Joey. Well he won those games and received a 1st place trophy. He gave his trophy to Joey. He brought tears to my eyes.

Anyways, I'm to tired to write much so I'll post it in pictures.

Blue Rose

So every once in awhile as I am reading through my friends blogs I read something truly inspirational. Sometimes what I read are things my friends have wrote or are things they got from other people. Either way they are amazing and touch my heart.

Here is one of those stories.

Blue Rose

Having four visiting family members, the wife was very busy, so I
offered to go to the store for her to get some needed items, which included
light bulbs, paper towels, trash bags, detergent, and Clorox. So off I
went.

I scurried around the store, gathered up my goodies, and headed for
the checkout counter, only to be blocked in the narrow aisle by a young man
who appeared to be about sixteen-years-old. I wasn't in a hurry, so I
patiently waited for the boy to realize that I was there. This was when he
waved his hands excitedly in the air and declared in a loud voice, "Mommy,
I'm over here."

It was obvious now, he was mentally challenged, and also startled as
he turned and saw me standing so close to him, waiting to squeeze by. His
eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's
your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but
my name is Steve."

"Steve, like Stevarino?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from the next aisle.. "You're fifteen-years-old Denny; now be a good boy
and let the man pass by."

I acknowledged her and continued to talk to Denny for several more
minutes about summer, bicycles, and school. I watched his brown eyes dance
with excitement because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking
the time to talk with her son. She told me that most people wouldn't even
look at him, much less talk to him. I told her that it was my pleasure and
then I said something I have no idea where it came from, other than by the
prompting of the Holy Spirit.

I told her that there are plenty of red, yellow, and pink roses in
God's Garden; however, "Blue Roses" are very rare and should be appreciated
for their beauty and distinctiveness. You see, Denny is a Blue Rose and if
someone doesn't stop and smell that rose with their heart and touch that
rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked,
"Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure
love living in God's garden."

She reached out, squeezed my hand, and said, "God bless you!" and then
I had tears in my eyes.

May I suggest that the next time you see a BLUE ROSE, don't turn your
head and walk off. Take the time to smile and say Hello. Why? Because, by
the grace of GOD, this mother or father could be you. This could be your
child, grandchild, niece, or nephew. What a difference a moment can mean to
that person or their family.

From an old dandelion!

Live simply. Love generously. Care deeply. Speak kindly. Leave the
rest to God.

"People will forget what you said, People will forget what you did,
but people will never forget how you made them feel."lue Rose

Continues to Amaze Me!

On Friday we left Los Angeles to head to Sacramento, our layover stop to Idaho. The trip took us about 8 hrs. We had to stop every 2 hrs to feed Joey and gas the car up. On one of our stops for lunch, Joey decided to amaze me. We went to a restaurant to sit and eat. I put one of those thick, plastic, bendy straws that come in the kids drinks in Joey's hand. His hand was resting on the table when I put the straw in his hand. Right away he bent his arm and brought the straw to his mouth. He continued for about 10 minutes sucking and moving the straw around his lips. He had the straw in his mouth most of the time. His arm was bent the whole time and not resting on anything. He was really great to watch. When he was done sucking on the straw, he moved his hand back to the table and put the straw back on the table. WOW! Pretty amazing. Just when I think that I have seen all of what Joey is going to regain, he amazes me more.

When we got to Sacramento, we head to my aunts house for dinner and then to the hotel for bed. Uncle Dan, cooked us a great dinner. Thanks Nana and Uncle Dan. We started our second leg of the trip at my aunts house for Dan McMuffins. yum, yum.

Our drive from Sacramento to Idaho took us 10.5 hrs. And again we had to stop every 2 hrs for Joey. We got to Idaho with no complications. Joey went to bed about 9:30 at night on our first night in Idaho. This is late for him, but it stays light outside till that time so it is hard to put him to sleep earlier. Also when we are on vacation I have to lay with him to put him to sleep. This is not the norm, so my sleep has been crappy.

We are visiting all the restaurants on man vs. food, hee hee hee and having a great time with my sister-in-law and my niece and nephews. It is definitely a bit crazy in the house with 4 boys running a muck. However they all love Joey and are very caring.

We have 3 more days here and then we head home. Here is a picture of Joey and his straw.

Life!

The PLEDGE OF ALLIGIANCE

My Team

My Friends really like me.

Getting my trophy and year book and thanking the firemen.

My TROPHY

Life is filled with so many twists and turns. Just when you think things are going to settle down and your life and mind are not going to be so stressed and chaotic, there is a twist in the road.

On Friday Joey finished his 3 weeks of IMOT (Intensive Model of therapy). He did a great job. He is so much stronger. He did the whole 3 weeks with his casts on. Speaking of cast, 2 weeks ago when we went in to get them changed, the dr. put on removable cast. These are just regular cast that were cut down the sides and ace bandaged closed. Friday afternoon I had to take Joey to get fitted for his new AFO's (braces). When we were done and his cast were put back on they just didnt fit right. By Saturday morning he wiggled out of them. So I dedcided to put on his old braces. These are just a little small, but didn't look to bad or seem to bother him. Well I was wrong, by 2 oclock in the afternoon he began screaming and pulling his legs in. This is what he does when he has to go to the bathroom. So I assumed he had to go o the bathroom. He cried all day and most of the night. At about 5am Sunday morning I decided to put him in the tub to help relieve his so called tummy pain. As soon as I took his braces off all was well. He took a bath and then was a happy camper. It was a very frustrating day. It hurts when you can't figure out why your child is in pain.

So with that all being said, Joey is no longer wearing his braces or casts. His feet are already starting to point again. We don't get his new AFO's until 2 weeks. I take him back to the dr. tomorrow for new casts possibly. I just hope we don't lose all that we have tried so hard to gain with his feet. I keep stretching and stretching and stretching him. Please PRAY that is all works out the way we need it to be.

Also on Saturday before his crying began, he had his allstar game and closing ceremonies for baseball. The challengers league is such a great league. I love that my son can play baseball like other kids his age. There are so many types of kids with disabilities in the league. It is the most none competetive, hard working, dedicated league of baseball anywhere. The Simi Valley Youth baseball league along with the Amanda McPherson foundation is trying to raise monies to build the challengers their own field. I cant wait for him to play again next year. He had a great time.

I have some great news. I talked to the HBOT clinic to schedule his appt's. They are only charging me $100 a session. This saves me a $1000. Whoo HOoo! We start in Aug.

Ok thats about it for now.

End of Suit Therapy

Today was the last day of Joey's three week intensive suit therapy. Joey did great. He had his casts on for the whole time and still kicked butt. He is holding his head up so much better now and is bearing weight through his arms when he sits all the time. We also did Vital Stim therapy which helped him to close his mouth around the spoon/fork when fed. He also began drink more from a straw and sippy cup. He did a really great job.

I posted a couple of videos on www.dropshots.com/fightingjoey

I did not take any pictures this time. I have tons and tons of pictures of Joey and his suit therapy.

Our next therapy adventure is to Phoenix, AZ for ABM therapy. We will be going in July for a week. I am very excited to see the results from the ABM.

Today after his graduation from suit therapy he got fitted for his braces (DAFO's). I am very excited to get them. They will be ready in 2 weeks. At this time we can throw away his casts. WHOO HOO!

We thats my little update for now. I'm tired and going to bed.

Night!