WHY WAIT?

So for everyone that reads Joey's blog, this post is not directly about him.

So if you don't want to read it click off NOW.

I was talking to my mom today and the question (or maybe more like comment) was brought up. WHY NOT WAIT? Ok let me go back a little and explain.

I am entertaining the idea of taking Joey to Costa Rica for stem cell therapy. During my constant research on SCT I have seen that the more frequent and the closer together you do SCT the better results. I know many people are saying to themselves, "BUT, you haven't really seen a lot of results with Joey from China? So why Costa Rica?" Well yes we have seen good results with Joey. His eyesight is so much better, his cognitive awareness and muscle tone is much better and it has only been 2 1/2 months. Why Costa Rica, well I know two children that have gone and they have had great results like Joey. Costa Rica is also only 1 week instead of 4 weeks. The cost is relatively the same. I also don't need a second person to help me. I can go by myself.

So the comment or question is why not wait till the US is doing it? Well first of all nothing is guaranteed. The US has not began trials on donor cells yet. Who knows when they will begin. Also who knows how long the trial will take (2-5 years). Then, what is their protocol on SCT going to be. Also what will be the cost. Not free, Insurance won't pay for it.

So why wait for something that is not guaranteed when I can do it NOW and help Joey now. I don't believe SCT will bring the old Joey back, however I do believe that he will live a much better quality of life.

So please everyone, I would love to hear your opinions. Positive or Negative. Give it to me.

The Journey is Everything!

HALLOWEEN SUCCESS

What a great Halloween and Birthday. The day started out with a parade at Joey's school. We then had our friends and family over for some Halloween fun. We had lots of SUPER HERO'S and JAMES BOND to protect us from the scary MONSTERS, HANNAH MONTANA/MILEY CYRUS performed and the DINOSAUR roamed the yard for predators. The GNOMES looked great as yard decoration and the HIPPIES just chilled out and enjoyed the punch and brownies (hee hee hee). The BUMBLE BEES buzzed around the FLAPPERS and everyone had a great time. We had tons of snacks, punch for the kids, pizza for all, and alcohol for the over 21 crowd. After some time eating and socializing, it was time to do a little trick or treating. Most of the group went trick or treating while some of us stayed back for conversation and alcoholic beverages.

We had a great day. However last time I do a Halloween Party. I'm exhausted. hee hee

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Almost 2 Months Post China

We are almost 2 months post China. WOW time flies fast. We were told at the beginning of our China trip that we will see improvements up till six months post China with the full results and most major results at that six month mark. Some of the other things we were told was that some things will get worse before better, but these are the things that would ultimately improve the most. The other thing I heard is it that the Stem Cells will first improve the issues that is harder for people to see, example; Vision, cognitive impairment, seizures, reflux, etc. When we were in China, right away we noticed Joey's vision improving. We also noticed his body was a bit looser. However he began grinding his teeth even worse then before we went to China. His grinding has definitely gotten better since we got home. His vision and cognition are still improving. He is focusing a lot now. We have a vision test when we go to San Diego for his Sensory Learning therapy. His body is not as loose as it was, but still looser then when we began our journey. He rolls now from his back to tummy, not every often, but he didn't do this at all before. He is also vocalizing a lot more. His 'I love u's" and ' Hello's' are a lot clearer.

So now I am wanting to go back to do Stem Cell Therapy again at that 6 month mark. I have learned that the more you do it in the shortest amount of time the better results. The MAJOR issues are MONEY and TIME. So I am thinking about taking Joey to Costa Rica this next time. It is only a 1 week trip and about $16,000. I have had three friends take their kids here and they have also seen great results, so I feel good about trying Costa Rica. Also when you make return visits to Costa Rica it only cost $8,000 instead of $16,000. That's a plus. I have some friends going in February and I have talked to one of my friends who is a single mom and we talked about rooming together and helping each other, so husband and kids could stay home. BUT, again the issue is MONEY $16,000. So we will see, if not February then spring or summer.

We ordered Joey his wheelchair. I'm so excited about getting it. He has gained 3 lbs since China. This is the most he has gained in almost three years. WHOO HOO! except for my back. Boy does it feel that extra weight. I am going to have to start thinking about getting a van with a ramp.

Otherwise everything else here at the Stafford house is going great. Holidays are coming which means camping with our Best friends and great memories with the whole family.

WHATEVER IT TAKES! NO MATTER WHAT!

Things to Share

I have a few things to share with you all. First, I made a video for the HUGS Foundation. The HUGS Foundation is a non-profit organization that raises monies to help our kids with therapy and equipment that our insurance doesn't pay for. AND our insurance pays for very very little. This video shows only a very few of the kids in need. There are thousands all over.

OK, so I also have a pet peeve to share. Of course this had no effect on me until Joey became disabled. I use to be guilty of this also. I'm talking about HANDICAP PARKING. I understand that there are a lot of people out in the world that have underlying medical conditions that are not visible to the public that require the use of handicap parking because they can not walk the distance. BUT, if you don't need to use the parking spot then DON'T USE IT. I will even park in a non-handicap spot if there are other spots that will allow me to get Joey out of the car with plenty of space.

If you are going to the mall and have issues walking then why are you walking the mall. In that case park two spots over in a non-handicap spot. Leave the spot for someone who needs it for the space to get out of the car or for the van ramp access. IF you can walk the mall then you can walk 20 feet more from the other parking spot.

Also, DON'T USE the spot just because you have the pass and there is no other spot available close enough, when you don't have the disabled person with you. Just because you have a handicap pass, be respectful for those that REALLY NEED the spot.

Today as I was dropping off Joey at school there were two people in front of me of which I know both. They both pulled into the last two handicap spots. One child is super mildy CP, she can walk just fine, she is just slightly mentally delayed. The other woman"s child is Autistic with a sister who had cancer. The mom has the TEMPORARY pass which was given to her for her daughter. The daughter no longer has cancer and is in kindergarten. Both kids are physically fine. I on the other hand had to park about 50 yards away on the side of the road. With no wheelchair or stroller had to carry my son to his class room. Both mom's turned and saw me and even said 'Hi". SERIOUSLY, they don't get it.

IF YOU DON'T NEED THE HANDICAP SPOT, DON'T USE IT. COME ON PEOPLE! URRRRGGGGGGG!

OK, I feel better now.

Today I am the mother of a 12 yr old. WOW! Where did the time go. Happy Birthday Jessica. We love you very very much. Have a fantabulous day.

Last Day of Intensive Therapy

On Friday it was Joey's last day of intensive suit and tomatis therapy. Joey and I spent 3 weeks at the NAPA Center. While Joey worked super hard on his physical and occupational and listening therapy, I spent time with the most awesome group of mom's ever. We discussed our children (all of them) and talked about therapies and life issues. We laughed a lot and cried a little. It was the best time I have had at the center because of this group of mom's. I'm really going to miss them all. Good thing is that because I still go to the center 2x a week I will see some of them here and there. I will keep in contact with the other moms through facebook (gotta love me that facebook).

Joey kicked A?! today. And of course I forgot my camera this day. Joey walked the best ever in tall kneeling (this is when joey is on his knee's). His therapist Rebecca was holding his hands, but Joey was lifting his knees high. He then was crawling awesome with little assistance from his therapist. She sat in front of him and helped him with his arms, but Joey did his legs all by himself. GO JOEY GO! Then Joey was put in a walker. A regular walker, not like the gait trainer he is normally in. This walker is one that you strap your arms down into and nothing else is supporting you. He did fantabulous. He normally would hate his arms being strapped down and his head would fly back when not supported. He stood up straight and didn't mind his arms being strapped down at all. He walked back and forth throughout the center.

We had a little going away party this day. We had taco's and cookies and cupcakes for dessert. A friend brought in donuts and another friend brought in a chocolate covered fruit basket. OK, so forget about weight watchers that day. I will exercise extra hard today. I went to Pam and Makenzies condo after therapy for a last goodbye. We took the kids to the beach. You should have seen the two of us moms's pulling these strollers backwards in the sand to get them to the water. Then bent over holding our big kids we put them in the water. Boy did they love it. Then again we trekked the strollers uphill back over the sand to solid ground. I definitely worked off that cupcake. My calf's were a little sore the next day. Oh yeah and somehow I managed to lose my flip flop. OH well, summer is just about over anyways.

As of Monday Joey is back at school for about a month until we head to San Diego for two weeks for more therapy. Our lives will be a LOT of therapy until about spring time. He gets fitted for a wheelchair on Monday. This is one of those bitter sweet moments. I really really wanted to delay getting a wheelchair for the hopes he will walk sooner then later, then I realized lets not push it. He will walk one day, be PATIENT. The sweet part about the wheelchair is that he will be positioned right and comfortable when we are out and about. It will be a lot easier to move him around. Joey has grown a lot. He is about 33 lbs and is super long. Of course it's going to work out that Joey is my 6 footer and 220lbs when fully grown. ha ha ha

Well a last good bye to all my new friends and old friends that I spent time with at the NAPA Center. The NAPA Center is definitely a PLACE OF HEALING.

THANK YOU

End of Intensive Session

Tomorrow Friday is the last day of Joey's Intensive Suit and Tomatis therapy. Yes Joey has made some great changes. He is able to roll from his back to tummy a bit now. He also can sit on a bench for a few minutes by himself now. His body is a lot looser. He seems to be reaching more with his arms. Because I am with Joey all the time, it just seems like I am watching grass grow. To really see the results, I need others to see him and tell me what they have noticed.

Besides Joey's great improvements. We are really really going to miss all the kids and mommies at the center. We had a great group of people these last 3 weeks. My sister and her daughter Faith, Pam and Makenzie from Colorado, Jennifer and Gracie from Las Vegas, and Kelly and Savannah from Redondo Beach, Ca. Joey got lucky to be surrounded by a bunch of hot chicks. At least we will be able to keep in contact on Facebook and through our blogs.

On Wednesday we did an early graduation performance. It was super cute. I have posted the video below.

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Fun Time...................and Therapy!

We are coming to the end of our 3 week intensive NeuroSuit and Tomatis sessions. Joey has been doing fantastic.

It is always kind of sad to finish these sessions. We have meet great people here. It is always so comfortable to hang out with others that understand your situation. Our discussions are usually about wheelchairs and drooling and feedings, if our kids are tight or loose today. We talk about how crazy our lives our and about the weather. These are just normal discussions. Nothing out of the ordinary or unusual. We joke about how jacked-up our kids our (our injured and typical kids). We laugh and cry. It is just a great place to be.

The therapists understand us and our kids. They work great with them. They know when our kids are fake crying or really need a break. They talk to them like if our kids were typical. Our kids respond to them like typical kids. So that brings me to "What is typical and not typical", OK, my kid can't walk or talk or feed himself, but he sure does understand and throws tantrums like a typical kid.

OK, anyways more about Joey. I took Joey to Disneyland with one of his therapist Kelly and her son Blake, and a friend Pam who is here at the center with her daughter Mackenzie. We had a great time. Joey went on tons of rides including the Matterhorn. That's his favorite ride. This was the best time I have had with Joey alone in a long long time. We spent quality mommy and son time. Then we had a sleepover and Makenzie's condo on the beach. Pam and I stayed up late and had pizza and buffalo wings and talked talked talked. Boy am I going to miss her when she leaves.

Kelly holding Makenzie and Joey with her son Blake.

Blake, Joey and Makenzie in front of It's a Small World.

With Winnie the Pooh.

Joey with Mikey Cheese hat on.

Mommy and Joey riding Dumbo.

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Makenzies's mommy Pam put together this montage from Disneyland.

Joey has responded great with all the therapy over the last 3 weeks. The one thing I really noticed over the last few weeks is that Joey is NOT grinding his teeth anymore. Not once have I heard him. This has been a big thing. Joey has grinded his teeth down to nubs. His body is so much looser. He is sitting much better and for longer. His head control is so much better, close to normal.

Our next therapy adventure is to Oceanside in November. We will be staying for 12 days. Joey will be doing Sensory learning. This is listening, motion and lights. Then we will finish the 30 day program at home. Then we will take a break through the holidays and start 2 months of HBOT in January and then do another NeuroSuit session in May. WOW, I'm tired just think about it.

Thank you everyone for your continued prayers and thoughts.

Love Always