FRUSTRATION IS UPON US!

Frustration, it hits only every now and then with Joey. Our new normal is well established now. Life is moving at a good pace right now, however my kids are growing up to fast.

This time of the year is probably the hardest for me when it comes to Joey. This is when all his dr. appts. are, when all the paperwork for all the services he has is due.

• The appt. I dread the most is his Orthopedic. Is there the beginning signs of scoliosis? Are his hips subluxed at all? How bad has his tendons in his calfs gotten? Are his abductors pulling in to much? Do we need to botox and serial cast AGAIN? This appt. is so stressful. Even though Joey is very healthy and happy I will for the rest of his life struggle with dealing with the orthopedic side of his injury.

• Then we have the Neurologist appt. Does he need medication? This is the question that is always asked. Usually though it is not that stressful.

• And what about the Opthamalogist. Can Joey see any better? What can we do to help his eyesight.

So my first thought is "Am I doing enough for Joey". Do I add more therapy? How much more can he or I take before it pushes us over the limit? So the answer to my questions are, yes we can do more, but just a little more. I am going to enroll him in speech therapy outside of school. Over summer and the first half of fall I took JOey to a clinic at CSUN to help him with an AAC device. Lets just say that they are not ready for a child like Joey yet, it didn't work good. He can't use his arms well enough to use a switch to communicate and his eyesight is not good enough for him to see what to touch or to even use an eye gaze device. So that leaves us with speech. We need to get Joey to TALK. That is going to be his best form of communication. So start TALKING Joey.

Then in January or February I will take Joey back to AZ for more therapy there. This usually helps him cognitively and hopefully wll help his tone in his body to keep him for having to have more botox. I need to keep up on this therapy and try and do it every 3 months or sooner.

Well that's it for therapy.

Joey loves school. He takes the school bus every day. I think this is his favorite part of school. He is a very happy boy and is growing up fast.

HAPPY THANKSGIVING!

2011 Near Drowning Mom's Retreat

Just this last weekend I went to Suncadia in Cle Elum, Washington for our 2nd ND Mom's retreat. This year there were 15 amazing mom's and 2 helpers. It was the best most normal weekend ever. Just check out my pictures.

BEAUTIFUL Ladies! BEAUTIFUL Leaves!

just having fun with Lisa

Yep, I'm creeping behind Joanna and Erin.

Fun times with Amy, Lisa and Lindsey

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Martha Washington and her daughter Amy. LOL!

Amy, your a natural on creeping.

3 Little Piggies (Lindsey, Kehau and me)

THE MOST AMAZING WOMEN!

The beginning of our fun.

Let the good times begin.

Lunch at the Winery!

Of course I have a million other pictures, you can find many on my facebook.

Thanks Ladies for a most amazing normal, comfortable weekend.

Thank you Sue for organizing it and thank you Tiffany for letting us use your place and Thank you Amy and Yoli for all you did for us this weekend.

I LOVE YOU ALL!

and these are the DAYS OF OUR LIVES!

and these are the "DAYS OF OUR LIVES". Growing up I use to watch this soap opera religiously. When I was in high school and then college I would tape it. I would never miss a show.

I have now not seen the soap opera in over 14 years. WHY? KIDS. OH my kids.......I love them to death, but boy do they keep you busy.

In the end of August all three started school. It was a big year for all of them. Jessica started 9th grade in High School, Jack started the 6th grade and my baby, Joey, started 1st grade. Jessica started softball and Jack kind of started football. He broke his arm 1 week before the first game, so he hasn't played, but still goes to every practice and every game. His cast just came off this last week and is healing great.We are hoping he will be ready to play in a tournament over Thanksgiving. Jessica just finished tryouts for softball in high school. We should find out later today if she made the team.

Then there is my little man, Joey. Like I said he has started 1st grade. His 1st grade teacher is the same as last year. The class in kindergarten/ First grade split. I really like this, because it took about the first 3 months to even figure out Joey and for him to get comfortable in the classroom to actually learn. So now that he has been with the teacher and his aide for a year now, He just picked up from where he left off last year and it has been great. Only difference with school this year is that he rides the school bus and is gone an additional 2 hours a day. However he has adjusted well. I think his favorite part of school is the bus ride. He loves the bumps and all the kids singing.

At school, he is walking everywhere in his walker. He even dances when he is in his walker. He uses a Big Mac button to help answer questions and sits in a cube chair independently during circle time. His sitting has improved so much. He can sit in a cube chair for about 2 minutes, and can sit criss cross on the ground on an average of 7 minutes.

When Joey started school I increased his food intake by a few hundred calories. he has gained 3 lbs since school started. He now weighs 44lbs. Whoo HOO! This is big.

As for now his therapy schedule goes as follows:

Monday - *Behavioral therapy 2.5 hrs at home

Tuesday - Hippo therapy

Wednesday - *Behavioral therapy 2.5 hrs at home

Thursday - *Behavioral therapy 2 hrs at home

Friday - Physical therapy 1hr at clinic

Saturday - AAC clinic 1 hr at clinic

He also gets two 1/2 PT and OT sessions, speech, and vision at school each week.

Thanks to my amazing babysitter I am able to get everyone where they need to be when they need to be there.

I am planning on taking Joey back to AZ hopefully in January or February for more ABM therapy. I need life to slow down just a tad before I run away to AZ for a week with Joey.

I am also planning on doing another garage sale in the spring to raise monies for Joey. He is getting big and needs some new equipment to help with his everyday needs. So start saving your things. Thanks

As for Jeremy and I , well we get alone time with or without each other whenever we can. Just enough to keep our heads out of the water. We are both crazy busy working carrying numerous jobs each.

This next weekend I leave for my Moms retreat in Seattle. I get to hang out with some amazing moms that are on the same journey as I. We all have kids that have had a near drowning. It is a great weekend and I look so forward to it.

So these are the "Days of our Lives". Boy do I miss watching anything but the Disney channel. LOL!

*Behavioral Therapy - is a combination of speech, PT, OT, and vision. The therapist work on getting him to communicate and initiate responses.

Old McDonald had a Farm

I know I haven't updated in awhile. I will post a full update soon, but I wanted to share this with you first.

Joey is practicing his sitting in a cube chair with no support. The therapist is singing to him and he decides to sing along to . Listen for the "E I E I OOO" at the end of the song.



TURN VOLUME UP FOR THIS ONE!

Arizona Therapy

PHEWWWWWWWWWWW ARIZONA IS HOOOOOOOOOOOOOOOOOOOOOOOOOOT!

I mean 94 degrees at 8:30 in the morning and 110 degrees by 1:00. Yeah HOT!

Joey had his first sessions of ABM today. He had one at 9:00 and the other at 1:00. Just from these two sessions, his body became sooooooooo lose.

Then we took a bath in the pool.........................the pool was so hot that is was a bath. NOT refreshing at all, but great therapy for Joey. I put on his swimming ring and off he went. He had a blast kicking his legs and flapping his arms. Then the ring broke. I put him in a life vest, but he didn't like it as much and I have to hold onto him the whole time. Finally I took the life vest off and just held him under his arms. His body was the loosest I think I have ever felt it. His whole body was a noodle. He was SOOOOOOO relaxed.

I plan on taking him swimming everyday we are here. I feel we are going to have some great results between the therapy and the pool.

I want to send out a HUGE thank you to my cousins The Mitchells for letting us stay at your house. I really really appreciate it.

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.