Moms Retreat!

First a quick update on Joey. He just finished a three week session of Tomatis (listening therapy). He now babbles a ton more and moves so much. He moves so much that he has fallen out of bed a few times. I now have 2 rails up, so far so good. He has been going to an AAC clinic at CSUN. This is so we can find a communication device for him. Nothing yet, still working on it. We leave in a couple weeks to Arizona for ABM therapy for Joey. Then when we return he begins 1st grade.

I have picked Jessica and Jack up from sleep away camp this last weekend. My house is a mess again and the amount of noise has increased 10 fold. Jack started football and is rocking it. Jessica will start softball in a few weeks. School starts for all kids at the end of August. We are also in the process of remodeling our downstairs bathroom and bedroom. We are making the bathroom larger and handicap accessible. When it is all done, we will move Joey downstairs. This should help prolong my back from falling on me.

In October I am going to meet up with an incredible group of women. I am going to Seattle WA on a moms retreat. However this is not just a regular retreat. All these incredible moms live the same life I do. We all have a child that had a Near-drowning. Ok so a little back story about our retreat. All of us moms constantly talk over facebook about out lives and kids. When we are deep in our conversations it feels very normal to us. These mommies understand our lives like no other person could understand. They live our life, our happiness, our sadness, our daily emotional and physical struggles. So finally after a lot of talking and a lot of planning, a couple women decided it was time for a gathering of the mommies. Last year we had our first retreat. One mother did most of the work. She made sure we had everything we needed. We did not have to pay for anything. With help from her friends, they provided the transportation to and from the airport (about 1.5 hr drive) and all our food. We had such a great time, we laughed a lot and cried a lot. We stayed up way to late and woke up way to early. It was such a great trip no one want to leave. The 12 woman that went formed a bond that will last an eternity.

This year we are having our 2nd retreat. We have 18 mommies going this year. Some of these mommies have NEVER left their ND child (hard to trust someone to take care of them). They are coming from all over the country. We want to make sure that these new mommies have the same wonderful experience that we all had. So I am asking for your help. Some of the things we need for our retreat is food money and gas money. We could use gift cards to any gas station and money donations. We are looking to raise about $1500. This will cover all our food, a night out on the town, game prizes and gift baskets. If you can help make our retreat something we will never forget we will be forever grateful. Our retreat this year is Oct. 21st-24th. You can mail donations to me or donate through the donate tab on Joey's website.

Thank You all for being there for Joey and I. Have a great Summer!

Update on ME.

Joey:

So bear with my mom, it has been awhile since she wrote and has a lot to tell you all.

Mom:

School is out. Joey completed kindergarten and is going into 1st grade in the fall. I can't believe my baby is going into 1st grade ;( Kindergarten was a great year. He learned so much and did so much in school. He has a gait trainer (walker) he uses and walks all over the playground and classroom. He also has a stander in his classroom and he is working on sitting independently in a cube chair. The goal is to get him to sit for 15 minutes in it. This chair has NO support. Its all him. He can sit for 3 minutes now in the chair. The teacher and aides have been working great with his switches to get him to communicate. He reaches and pushes his button to talk. He is doing great using his special crayon to color me a million pictures. In the 1st grade he will have the same teacher and aides which is great because they know him already and its not starting from the beginning again. Right now he is in summer school for 4 weeks with the same teacher. He loves hanging with his friends.

In March he had botox on his hamstrings and calf's again to help loosen him up. It works fantastic with Joey. He grew so much in the last year that we had to get him new AFO's (ankle foot braces). He has set a new record when it comes to sitting independently. He can sit on the floor criss cross applesauce for 36 minutes now. He reaches outward now to grab and touch. He walks in his gait trainer all over now. We don't even count the steps anymore.

In January Joey got glasses as a therapy tool to help uncross his eyes and get him to use his central vision. Well, it is working. He is tracking and focusing so much better. Still can't figure out the extent of his eyesight though. In June Joey started an AAC clinic at CSUN. This clinic helps determine which is the best communication device for Joey. We are only 3 days into it and he is already making choices. It was great to see him use his button to make a choice.

In April, my mom and I went to the abilities expo here in LA. A convention for the disabled. We found a fantastic bike for Joey, but unfortunately the cost was way to much ($3700). I know right just for a bike. Well at the same time we saw this bike, a friend contacts me asking if I want to buy a bike for Joey that his son has outgrown. AND guess what? It was the same exact bike we saw at the expo. So Joey has a new bike. He loves it so much. He uses it almost every day.

Joey will start Tomatis (listening therapy) and Vital Stim (swallowing therapy) in July for 3 weeks. It is an intensive program in which he will go everyday. The Tomatis will help him organize himself and the Vital Stim will help him drink better. Both therapies will also help his speech and voice better. When this is done we will be heading back to AZ for more ABM therapy. Joey was so loose after this therapy. He did really great. So we have a full busy month of July.

Tuesday is Joey's B-day. He is turning 6 yrs old. We are having a little b-day party for him on Sunday. I will post pictures of his party this next week.

Well I think that's it for now.

Feels Perfect

Tonight before I put Joey to bed he sat on my lap and we cuddled. He snuggled into me.

So why is this so exciting? Well for those of you that have personally meet Joey, you know how stiff his body is. He is Hyper tonic (stiff, muscles always contracted). His abductors pull in, his arms are usually straight out stiff, and his back is always very tense. Tonight as he sat on my lap, legs straddled across my hips, his chest against mine and his head snuggling into my neck, he was not tense. He was looser then I have ever felt him. NONE of his muscles in his whole body seemed contracted at all. He melted into me. We laughed together and of course I kissed his face all over. He felt like he didn't have brain damage. Nothing seemed out of place.

This was the most perfect 15 minutes I have experienced in the last 4 years.

Good Night Joey. Mommy loves you. Sweet Dreams.

Hi, my name is Joey!

Hi my name is Joey. My birthday is June 28. I will be turning 6 years old. My mom is going to give me a Mickey Mouse birthday party. Mickey Mouse is my favorite. I love watching Mickey Mouse club cartoons all day long. It really makes me happy. When it is not on all I have to do is yell "MOM" and bam, Mickey Mouse is on my ipad. There are many different things I like. I love hearing my friends play. I love music and hearing people sing. I like when people hold my hand and pull me along in my wheelchair. I love when people cheer. I love ice cream and cake and pudding.

When people see me in my wheelchair from afar, or even close up, most think I am completely disabled. Well, I'm not. Then there are those people that know me well and still judge me and think that I would not want to do what a typical 5 yr old boy would do. Don't boys like to play baseball? I am on the Cardinals and love wheeling around the bases and throwing the ball. Don't boys like to jump on a trampoline? I think this is my most favorite thing to do, especially when my brother plays with me. Don't boys like to play at the park? I like swinging on the swing. Don't boys like to pound on things and get dirty and yell and flirt? I love doing all these things too. I just do all these things a little different then most boys. I have best friends at school that are typical. They read to me and play with me and make sure I have what I need to be happy. They don't know that I am different (ok maybe a little different, but not totally different). They give me high fives and fight over who gets to push my wheelchair.

I have a wish. I wish that moms and dads would not teach their kids that I am scary or fragile or not of typical mind. That moms and dads would let there kids come and talk to me when we are out and about. I like when they ask questions about my wheelchair or braces or anything about me. I wish that adults would not assume that I would not want to play or can't play or would not want to talk or can't talk. I wish adults would not judge my life and me as a person. If you have questions, any questions, ask me, my mom is there to help me with the answers.

Just because I am in a wheelchair and can't talk much, doesn't mean that I am not a 5yr old boy that likes the same things all other 5 yr old boys like. THINK ABOUT WHAT I WANT, NOT WHAT YOU THINK I WANT. Ask my mom if you don't know.

HAPPY MOMMY'S DAY to my MOMMY and GRANDMA'S and AUNT'S and all those wonderful Mommys out there.

"I GO"

Santana and Joey Hanging Out

Joey says it best, "I GO".

Since 4 years ago Joey and I have been traveling all over the place for therapy. We have spent close to 100 hours in the air and 1000 hours and miles in the car. When Joey started Kindergarten this last fall, I decided it was time to take a break. We moved therapy to a clinic around the corner from our house and only traveled to NAPA Center in LA a few times. Well as most of you know me, I can't sit still for too long. So off and running we go again.

Just this last week I took Joey, Jessica and Jack to Arizona for ABM therapy for Joey. We have great friends that opened their house up to us all. Lindsey, James, Jett 9, Santana 6 (near drown like Joey), and Tyree 3 ("What the Heck"). Jack spent time hanging with Jett. This was great therapy for Jack. Jack has never meet another boy with a disabled younger brother like Joey. So without having to say anything, they understood each others lives and bonded great. Jessica split her time between her boyfriends, Cameron (her real boyfriend) and Tyree (the younger man). I hung out with Lindsey during the day and in the afternoon took Joey to his ABM therapy. Unfortunately on Wednesday I got sick. It is Sunday and I am home and still sick. Poor Lindsey, she got sick also. On Friday, sick and all, we took the younger boys to see Sesame Street Live, then went to a Charity event for lunch, then off to therapy. Besides this, we really didn't do much in AZ. The sickness got to us and did us in. However, Jack did not seem to bored and neither did Jessica.

Joey's therapy went great. He responded very well. His body is very loose. It will still take a few weeks to see the full effect of the therapy. I think I might come back to AZ in the summer and do another round of ABM.

Lindsey and her family have a great house that they built after Santana's accident. It gave me a lot of great ideas for modifying our house to fit Joey's needs. Thank you again for sharing your house with us. I really really appreciate it. I will miss you all. It is nice being around another family that lives your life. It makes things normal.

Progress 4 years Later

I used a talker today to help me communicate better. I hit a button with my elbow to let my mom know what I wanted. It was really cool. I still need a lot of practice, but I'll get there.

On Wednesday I sat for 30 minutes.

On Friday I crawled.

ENOUGH SAID!

What's Next

Doctors Appt., Doctors Appt., Doctors Appt.!

January and February are usually the families doctor appt months. The only doctor appt. that makes me nervous is Joey's Orthopedic appt. This is the apptt. were they check his hips for dislocation and his back for scoliosis. Well luck was on our side again and his hips are fine and NO scoliosis. Whoo Hoo! However, Joey did have to have botox in his calfs and hamstrings again to help the stretching of these muscles. He was serial casted for 4 weeks. He was also sized for new braces. He just got his other braces last June. That is how much his feet have grown. I was very proud of my husband, he took Joey to this appt. and dealt with the removal of his casts and the sizing of his new braces. He did a great job with Joey that I think I might send him on more dr. appts. Hee Hee Hee NOT!

Ok to slightly change the subject.......................or actually making a long story of my point in this blog..........................

Two years ago Joey's feeding tube was removed. He was eating great and continues to eat great as of today. He was drinking so so, not great but was getting enough. Over the last 6-8 months I have noticed that his drinking has gotten worse. He seems to choke or drown himself (ironic UH!) when drinking. Sometimes you can hear him wheezing when drinking. SO, I made ANOTHER dr. appt. Off to the Gastro doctor we went. I called the dr. requesting that we do a modified swallow study and of course he wanted me to bring Joey into his offices to evaluate him. AND what did he say when I got in there, "So I here you want to do a swallow study? Well lets do a swallow study", so why did I have to spend my time and money to see the doctor when he was just going to call for the swallow study anyways. I know why, but it's still frustrating. Well I am very nervous about this study. If it shows he is aspirating then the feeding tube will have to go back in. I am hoping this is not the case. I plan on doing Vital Stim all summer to help his swallowing. I haven't even made the appt. yet and I already am very nervous with butterflies in my stomach.

Good news did come out of this appt. though. Joey has gained 3lbs and weighs 40lbs now and has grown 4 inches since summer. Nice Joey, thats why my back and knees hurt. Thanks! So with this said, obviously he is getting enough nutrition without the feeding tube.

We also have another appt. this weekend, but not with a doctor. This appt. is with a therapy clinic to get Joey an AAC device (communication device). I am very excited about this appt. This can make a HUGE difference in the way Joey lives his life.

In a couple of weeks we are heading to Arizona for ABM therapy and a little vacation. We are very excited to do this again and pray for some awesome results.

Well that is the going ons here with Joey. Please keep us in your thoughts and prayers that his swallow study goes the right way and that we see changes with the ABM therapy and that we find the right AAC device.