Sunday, January 31, 2010

Sometimes You Just Have To Laugh!

WOW! What a month. I can't believe we are already at the end of January 2010.

Work, Therapy, School, Extracurricular Activities, Household stuff and just life has kept me extremely busy. The kids started back at school and so did the homework and projects. Jessica has started softball practice. Joey is heading to therapy 2 -4 hrs a day after school and Jack is practicing his Krav Maga. We got Joey's wheelchair so that has lead me to searching for a conversion minivan. So if anyone is interested in buying my Ford Expedition EL, it is for sale now.
I have also been working like crazy. Teaching at the studio 4 nights a week and Saturday mornings. Also have been putting in more work from home during the days. Jeremy is also working and training for his Black belt in Krav Maga.

My mind has been going crazy thinking about all the things I have or would like to do with Joey. Therapy, Fundraising, our Costa Rica trip, and all his upcoming Dr. appts. There is just so much, Sometimes You Just Have To Laugh, because if you don't laugh you cry. hee hee hee

This weekend just put the cherry on the top for the month of January. Joey woke up this morning with his eyes swollen shut. I took him to urgent care and he has pink eye in both eyes and a double ear infection. This is actually the first time in awhile that he has gotten sick. So while we were at urgent care I had the doctor check the rest of us. Turns out Jessica has the very beginning stages of pink eye also. Jack and I are cleared.

Sleeping at the mall in his wheelchair.

We then hit the mall. Joey is sitting in his wheelchair with his eyes swollen shut looking pretty messed up. He totally looked like a blind, severely disabled child. You felt sorry looking at him. Oh, he was also crying the whole time. We go into a store and a lady comes up to Joey (eyes swollen shut) and says "Hi Honey, LOOK at this monkey it dances". I stopped doing what I was doing and slowly looked at her holding this dancing monkey about 6 inches away from Joey and said "He can't see, he is blind". I'm thinking to myself, 'Look at him lady, his eyes are swollen shut, he can't see.' Really was I the only one that could see that. Sometimes You Just Have To Laugh!

After the mall I hit the market and pharmacy to pick up the kids prescriptions. Right after the first 2 drops in Joey's eyes he took a 1 1/2 hr nap and then woke up with both eyes open. Then a couple hours later daddy came home from work and Joey made a total liar out of me. Joey started laughing and eating again and you would never know he was sick a couple hours earlier. hee hee hee Sometimes You Just Have To Laugh!

So with all that is going on in our crazy life, everything is actually not to bad. Joey is physically better (besides the little sickness) then he has ever been. His body is sooooooo loose. His head and trunk control are awesome. He is doing fantastic in his recovery.

Thank you to all my family and friends who help out in my life. I appreciate you all. Thank You

Wednesday, January 20, 2010

New Wheelchair.

When Joey first had his accident, it was our hopes and dreams that he would learn to walk again very soon. Then the time came to get a seat for him. I got him a push chair (Hybrid, wheelchair/stroller). I was hoping he would stay in this until he could walk. It has been very hard and has taken us three years to come to terms that it would be a long time until he will walk again and when he does walk , it will be very restricted. During our trip to China, the airlines broke our push chair. So at this point we had to make a very hard decision. Do we order Joey another stroller or a wheelchair. We ordered Joey a wheelchair. The wheelchair is a better choice, because it will actually help him to sit better and be more comfortable. Then the really tough decisions had to be made, what color wheelchair and how did I want his name printed on it :)

I am very excited to say that we got his wheelchair today. My intrepidation's about getting one has all been overcome. My back will be under less stress, Joey will be more comfortable and we are all happy about it. Now onto a conversion minivan. I have been looking for a few weeks and hopefully figure it all out soon.

Have a good weekend all and for my So. Ca. friends and family, try to stay dry.

Tuesday, January 19, 2010

What's Up This Year!

What's up this year? SOOOOOOOO much.

Joey is just booking along in his Physical therapy. He is doing great. His body is nice and loose.

There is a new therapy we are going to try called ABM (Anat Baniel Method). This therapy really works the child's neurological development. I found a practitioner here in Santa Monica and then one of the head practitioners from the main center will be down in Santa Barbara in March. I am very excited to see his results from this. I know some other kids who have done this and they have seen some nice results.

Then in April I am taking Joey to Costa Rica for more Stem Cells. WHoo Hoo!.

In June, we are going to have a fundraiser for Joey to help offset some of his cost of therapy. Also in June Joey will have another intense session of suit therapy.

In August we plan on doing more ABM as long as we see results from the ABM we do in MArch.

Joey is going to see a new Orthopedic dr. This doctor specializes in Cerebral Palsy kids. I am also working on getting a handicap minivan so that I can save my back from breaking any further.

Ok that's about all I have planned, because that is also all I have monies for,

I will continue keeping everyone updated on Joey and his progress and therapies.

Thank you for your prayers and thoughts. Please continue to pray for Joey's healing.

Friday, January 15, 2010

3 Years Ago Today.................................

3 Years Ago Today................. my life changed forever. I lost my son that I loved for 9 months of pregnancy and 18 months of life. I watched my child die right in front of me. 3 Years Ago Today................... was the last time I heard him laugh or cry or smile or walk or play or feed himself as a typical child. 3 Years Ago Today................... our family was changed forever. We lost the people who we were. The light blew out in our beings. 3 Years Ago Today ...................... OUR JOURNEY BEGAN.

Over the last 3 years I have grieved the son I lost and rejoiced in the fact that I still had a child. I have adjusted to our new life. I have learned to appreciate our journey and make it happy. However, I am still trying to figure out how to turn the light back on within us. Each year I'm getting closer. I have learned a lot about life these last three years. I have met some wonderful people, who without them along my journey, I would have not survived.

However, no matter what, no matter what I still have, no matter what I learned, no matter what I have gained. I would trade it in less then a split second to have my typical son back.

I love my son Joey. I love all his abilities and appreciate all he has and if he did not improve any more from today on, then I will still be very very happy. However, I will continue to do everything in my ability to help his quality of life and to always work on bringing back the light in our selves.

I posted a few posts ago a little summary of the last three years. I also posted videos. You can also go to to see pictures showing our journey as far back as three years ago.

Thank you all for caring for Joey and us. Your thoughts and prayers are always welcomed and appreciated.

Love always

Wednesday, January 13, 2010

Progressing Right Along......Keep's going and going and going!

OK lets see where do I start.................In 2009 Joey was receiving Behavioral therapy 3 days a week for 2 hours each. What is behavioral therapy you ask. Well for each child it is different depending on their issues. For Joey it is Physical, Occupational, Speech, Feeding therapy and play time. The therapists keep data on everything within the session. Every quarter they do a quarterly report putting all the data together. This last quarter was a bit different because they only saw Joey in July before stem cells and then the quarter ended in November. Here is a brief summary of his progress

'Joseph has improved in several of his goals since returning from his two-month trip to China. Although there was a substantial pause in services, Joseph has demonstrated maintenance of many of his goals and improvements in others. In November 2009, Joseph's physical reaching average increased by 16%, while his ability to say "goodbye" increased by almost 20%.'

When the therapist first arrive, they would sit Joey up. In July he would sit for an average of 3 sec. This was with no prepping. In November his average sitting time was 9 sec. (up 6 sec.). As of Dec. is average is 15 sec (up 6 sec. more). So far in Jan. his average is 24 sec.(up 9 more sec.).

HUMMMMMMMMM! I wonder if the stem cells worked! Hee hee hee

Then today I went to the market and forgot Joe's stroller. This meant I either carry him and break my back or go home and get the stroller. Well I wasn't about to do either. I decided to sit him in the cart. Previously (before stem cells), he could not sit. He would fall back or to the side. However, today was different. He SAT. Yes he SAT. He did not once fall back or to the side. Instead he sat straight up with hunching forward once in awhile. As he got tired sitting 20 min. He would lean forward and grab onto my shirt. I think he just wanted kisses. HA HA HA!

His body overall is very loose. His weight bearing on his arms and his standing are so much better. He can sit in circle time at school for 15 min. with little help. He sits in a square box like chair. No support the whole time.

In April we are going to Costa Rica for MORE stem Cells. I am so excited to see the changes from this.

Ok that's about it.

Blessings to everyone


Tuesday, January 12, 2010



The Lemonade Award is given as appreciation for those people who have been given lemons in life but have been able to make lemonade out of it all. I received this award from a good friend of mine, Pam, that blogs about her family's journey on her blog
Makenzies Miracle.

So here are the rules..

*Put the Lemonade logo on your blog or within your post.
*Nominate at least 10 blogs with great attitude or gratitude.
*Link the nominees within your post.
*Let the nominees know they have received this award by commenting on their blog.
*Share the love and link to the person from whom you received this award.

Here are my nominations:
Charlie K

Well that's it for this post. I will post more about Joey tomorrow. I have a lot to tell, but not enough time right now.

Night, Night!

Thursday, January 7, 2010

To Cuddle!

What does a little cuddle mean to me? A cuddle, to cuddle, means the world.

There are those kids that always want to hug and sit in your lap and want to be held and then there is the kid that never wants to hug or cuddle. You have to threaten the kid that if he/she doesn't hug you then you are just going to have to take a hug from them. However, these kids will still cuddle, when they are sick and need their mommies. Then they're are the kids that can't cuddle or hug. I have had the experience of all these kids. My first was not a cuddlier, my second at 9 yrs old still cuddles, and my third child for the last 3 yrs could not cuddle.

When you have a child that can't cuddle, it hurts. Of course it hurts the mommies and daddies the most. Every mom and dad wants to grab their child and have their child hug back or hold on tight for a cuddle. When your child can't do this it hurts the heart.

Since Joey's accident he has not been able to cuddle or hug. If you held him to close he arched back (went into extension). This was just a reaction his brain told his body to do. His respond was not his chose either.

Well since stem cell therapy things have changed. One of my greatest joys has come true. Joey will cuddle now. His body no longer goes into extension every time you hold him. He will curl his upper body into you. His hands will lay relaxed on your shoulders and he will then demand kisses with the movement of his head and mouth. You can tell he is pleased with himself that he is able to do this now.

His cuddle is the most priceless thing in the world to me right now. I get teary eyed just thinking about it. I will hold him until my back goes out, just to be able to cuddle with my little man.

I pray that all my friends who have kids that don't cuddle or hug will one day be able to. My prayers are with you all.

Monday, January 4, 2010

New Year, New Stuff!

Why is it that as you get older, time goes by faster? I just can't believe another year is gone. January 16th is going to be 3 yrs since Joey's accident and the beginning our our journey.

Here is a recap of our journey:

January 16th, 2007 - Joey decided to go swimming without any help. Well that didn't work out to well for him. He suffered an anoxic brain injury.
Feb-April. 2007 - Joey was just trying to recover from the accident himself. He was going to therapy and HBOT. Yet was still trying to wake from his brain damaged state he was in.
May-Dec. 2007 - Joey was now awake and aware of his surroundings. A lot of changes in his body happened this year. He also began to eat and drink orally. Therapy continued 6 days a week. Special needs equipment began showing up in our house.

By the end of 2007, Joey could hold his head up fairly well, get on hands and knees and hold that position for a few seconds, eat orally, smile and laugh hysterically.

2007 was a year of understanding, learning patience, and just trying to recover and find the path to move on.

Here is the video I made after the first year of our journey.

Then 2008 began. By this time it was all about research. Research this therapy and that therapy and learning what works best for Joey. He also turned 3 yrs old this year and a lot of changes happened in our lives.

Jan.-May 2008 - Therapy, therapy, therapy. Joey was also weened from all his medications and by April I was no longer using the feeding tube for food. He crawled for the first time in February and really began using his body a lot.
June 2008 - We moved to a new house (to hard to live in the house where the accident occurred). Also the therapy that Joey received 6 days a week ended. He now belonged to the school district.
July 2008 - Time to relax. We stopped most therapies this month and went on vacations. We were all drained from life.
Aug-Dec. 2008 - Pre-school starts, new therapies start and a lot more changes began. Joey was now drinking all liquids through mouth and has finally gained weight. He also began to talk. Really talk. He could say "I go", "I love You", "I'm good", "I'm cute", "Hi", and "Hello", and every once in awhile throw in a new word. His speech however was very difficult to understand, but those around Joey all the time understood.

2008 was year of therapies and major changes in Joey.

Click to play this Smilebox slideshow: 2008 Memories
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OK that brings us to 2009. 2009 was also another year of new therapies and wonderful changes.

Jan.-July 2009 - Joey got very familiar with school. Made a lot of friends and a lot of art projects. He continued his PT, OT, ST, Vision therapy. He also did his Neuro Suit therapy and walked a lot in his gait trainer. He began Behavioral therapy and gained a lot of new skills from this. Joey also felt that in Jan. it was time for his feeding tube to come out. So he pulled it out. He began to eat much more and better ever since.
Aug. 2009 - Joey traveled to China. We spent the whole month there and had a fantastic time. We met great people and had yummy food. Joey and I got to really bond with Grandma Marleen who went with us on the trip. Oh yeah and the stem cell therapy went great also. Right away we noticed his vision improving. He also gained 3 lbs in China.
Sept.- Oct. 2009- Joey did another round of suit therapy and tomatis. He really began using his arms during this session.
Nov. 2009 - Joey spent most of the month in Oceanside doing Sensory Learning therapy. This really improved his vision.
Dec. 2009 - Joey had all his dr. appt's. Neurologist thought joey was doing great, Orthopedic says no scoliosis and hips are not dislocated, and Neuro Optometrist says Joey can see (however not perfect and uses his peripheral vision and right eye to do most of the seeing). We then spent the rest of the month with family celebrating the holidays.

Click to play this Smilebox slideshow: 2009 MEMORIES
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Now onto 2010, twenty ten. WHOO HOO!

Joey is continuing with his therapy. We will do more Neuro Suit therapy and tomatis and Stem Cells (in Costa Rica this time), Sensory learning and new therapies I am researching. He will also start kindergarten this year.

I am hoping and praying for more improvements in 2010. My fingers are crossed.

May everyone have a very blessed, happy, healthy and safe 2010.