Monday, October 26, 2009

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!


Friday, October 16, 2009

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.


video


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.

Sunday, October 4, 2009

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

Thursday, October 1, 2009

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.