Tuesday, September 29, 2009

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.
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

Thursday, September 24, 2009

Life is Good!

Yes, I think life is good. It can be chaotic and crazy and frustrating and physically and emotionally draining, but it is good. My kids are healthy, I have a husband that loves me and a wonderful family that is always there to support and love us. I have a great business with great employees, and I have great friends who are always there when I need a shoulder or a good laugh. Of course, I would love for it to be a little different. I would love not to have to go to a million different therapies, or have to still buy diapers when my son is 4 yrs old, or have to sit and feed him, or carry him where ever we go because he can't walk. But all in all LIFE IS GOOD!

Jessica, Jack and Joe have started school and are doing great. We found out a week ago that last years grades for Jessica were wrong (teacher error on report card), she ended up getting a 3.5 in all GATE classes. So now I owe her an iphone. That was the deal. A 3.5 GPA and I would buy her an Iphone. Jack started football and is kicking butt. Jessica is cheerleading and planning her 12th birthday party on Oct. 16th. As for Joey it is all about therapy time.

Joey is 1 1/2 weeks into his 3 week neuroSuit intensive therapy and Tomatis sessions. He is doing sooooooo good. Great head and trunk control. Looser body all around. Great communication. He is my superstar.

Jeremy and I are just as busy as usual. So we decided to do a triathlon because we had a few extra minutes in our 24 hr day. LOL! We have been training hard. I plan on kicking his butt in the water. He will kick my butt on the bike and run, but as long as I finish I'll be happy. Our business is doing awesome and the house has not fallen down yet. hee hee hee

Thanks everyone for your support and for help making our life good.

Here are some pictures of Joey during therapy.








Thursday, September 17, 2009

4 Days into Intensive Session

Joey is doing great. He is 4 days into his intensive NeuroSuit Session and is doing awesome. He is sitting on the edge of a table for about 5 seconds before needing to be corrected with a nudge, he is also sitting on the pony (not an actual pony, the machine is called a pony). He continues to self correct himself when he starts to fall over. He has been working really hard trying to crawl and climb up a ladder.

Here are some pics of Joey during his session












video

Monday, September 14, 2009

More Intensive Therapy

Today Joey has started another round of intensive NeuroSuit therapy. The therapy is 5 days a week from 8-2:30 for 3 weeks. We were told to do as much therapy as possible after stem cells to get the stem cells active in his brain. So we will start with the NeuroSuit. Today was our first day and Joey did great. He was very happy and loose. Then when that ended, he continued therapy with doing Tomatis. Tomatis again is listening therapy. As soon as we were done and got in the car he passed out. We didn't even make it around the corner and he was passed out. There are 4 other kids doing the intensive NeuroSuit therapy program. All are girls from 2-4 yrs old. Joey is one lucky boy. My sister is bringing her daughter Faith and my friend Pam from Colorado brought her daughter Makenzie. Makenzie is very similar to Joey as far as physical and cognitive abilities. They look very cute together. I will take pictures tomorrow and post them.

I am also looking into Sensory Learning program. This will work with his eyes, hearing and balance. I need to get those stem cells to the Occipital lope in his brain to get him to see again. Hopefully I will be able to start him on this in November. Then in January he will start HBOT again. He will do 40 sessions. After all this, we will continue with his traditional therapies. I have to get as much therapy as possible into him in the next 5 months.

I will post more pics in a couple days.

Please continue to pray for his recovery.

Thanks

Monday, September 7, 2009

Back on Schedule

Well we have been home a week now and we are both back on schedule. Joey is getting use to sleeping without me and is sleeping in his own bed. He just needs to listen to music when he falls asleep and will wake up crying once in the middle of the night. He will then just cry himself back to sleep. I think he liked it better in China then at home. In China he was held most of the time. There was really no place to set him down, so we held him a lot. Here at home he is put back on the floor and doesn't like it so much. 

As far as improvements, well we really haven't seen anymore since we have been home. I talked to some other people who have had SCT and they stated that one day you will see a huge improvement and then the next day he is not doing those things anymore. However, Joey still feels looser then before, just not as loose and his eyes still show the improvement. It seems his cognitive abilities have gotten better. His response time is quicker and when we talk to him he replies quicker. The other day Jack was watching TV and was saying Kill em, kill em. Joey then said kill em. I looked at Jack and Jack looked at me and we both started laughing, Joey then began cracking up also. I have noticed some of Joey's younger reflexes have returned a bit stronger. I was told that as the Stem Cells graph to the brain that we could see some small regression in certain areas. It is not bad, just there.

I miss the world I lived in in China. It was very comfortable to be where there were only people with disabilities. We all understood each other and I was just so at ease there. I wish all my friends in China great results. Hopefully we will see you again one day.

Joey started school on Friday. The therapist had to redo Joey's gait trainer setup completely because of how loose his muscles got. They also have to figure something new out when it comes to his seating. The chair he uses at school doesn't hold his upper body in. He never needed it before, because he didn't sit forward. Now he sits forward all the time. He has one more week of school, then he begins his intensive session of therapy for three weeks. I can't wait for this.

Well that's it for  now.

Happy Labor Day everyone. Have a nice day off.

Thursday, September 3, 2009

Some Misc. video and more Pics from China

Joey with his friend Nathan. Nathan is 1 week younger than Joey and 30 lbs heavier.
Hanging out and Laughing
Sitting on the plane by himself
Joey and his girlfriend Brianna
video

Tuesday, September 1, 2009

Why I Choose China?

The question I get asked a lot is 'Why did you choose China'? I researched Stem Cell Therapy for about a year. I looked at every company, Doctor and program out there. I compared all based on many different factors. Here is what my decision was based on:

1. Type of Stem Cells
Umbilical Cord vs. Fetal vs. Bone Marrow. China does umbilical cord. This has been the most researched and shows the most effective in CP kids.

2. Where they came from
Stem cells in China come from the birth of the children in China. It is a normal procedure for the parents to sign the rights away to the government.
 
3. Processing of the stem cells
The stem cells are sent to a lab within the governments lab to be processed. They are tested for genetic issues and any diseases.

4. Delivery of the stem cells
Once the stem cells are taken from the birth of the child, they have 12 hours to process it, deliver them and inject them into our child. If  12 hours go by then the will discard the stem cells. The stem cells are not frozen, so no additional chemicals are put in our children.

5. How they are injected.
The first injection is always through an IV. The following injections are through a spinal. Of course this depends on the child's condition.

6. COST
Cost depends on the amount of injections you choose to receive. During your very first correspondence with the company, they will have you fill out a medical evaluation and will then suggest the amount your child should receive. We were going to do 5 injections at $23,500, but when I got to China I added another. This cost an additional $3500. However if you choose to do more before you leave for China, the cost is only $2600 of additional injections. 

7. Accommodations
Your length of stay is determined on how many injections you are to receive. 5 days for each injection. They like to give each injection at least 72 hours between each other.  We were there 25 days, since we had plenty of time we were able to add an additional injection without having to stay longer. The company in China has several different locations (hospitals) in China that they do the treatments out of. We were in the Qingdao hospital. They have half of the 8th and 9th floor dedicated and converted into the Stem Cell unit. Your room consists of a mini refrigerator, microwave, tv, dvd player, hospital bed for patient and a queen bed for caregivers. We also have a desk and chair, Some rooms also have couches and we have our own large bathroom. There is also a common area with 4 couches and tables, 2 computers and a kitchen. There is also a game room on the 9th floor with a ping pong table and large TV and gym equipment.

8. Additional benefits
Included also in the cost is therapy for your child.  Joey received 3 hours and 15 minutes of therapy  four days a week.

Comparing this will the other places, Dr.'s and companies that do Stem Cell therapy. China is the only one that does not freeze there stem cells. They are also the only ones to inject via spinal. The other places do not provide accommodations or therapy. This is were the price is different. The other companies also only give 1 -4 injections. China has also been doing the Stem Cell the longest and has done the most research on Stem Cell.

I'm sure there were more reasons, but I can't think of all of them right now.

If anyone has any other questions, please let me know.

Our Journey Home

WOW what a journey home. We left on Sunday August 30th and took a flight from Qingdao to Shanghai. This went off without a hitch. We spent the night in Shanghai and were schedule to fly out on Monday August 31st. The airports in China are not handicap accessible, so it was hard to maneuver with Joey. Thank god for my mom. I couldn't have done it by myself. Then on Monday our flight was originally scheduled for 9:50am. We didn't actually takeoff till 4:00p. Around 2 we got on the plane and then spent 2 hrs on the tarmac. There was a typhoon in Tokyo that delayed us. So all flights were delayed in and out of Tokyo. We finally made it to Tokyo after a 6 hour delay and had to RUN to our connection. When we got to the gate it had already closed., but the plane was still there and the doors were still open. We through a fit about being in the airport with a handicap child and the manager was called over and they let us in. However, we were told our bags would not make it. Not a big deal we would get them the next day. Joey slept the 9 out of 10 hrs of the flight. So that is why Joey and I are up at 3:00am writing this. We spent about 3 hours at the airport when we got to LAX. We needed assistance because the airlines broke Joeys chair. We had to file a claim on that and report our missing bags. OK, so to say the least we are HOME with no bags, feeding chair or wheelchair and have major jet lag. BUT, we are HOME.

China was an awesome experience. Major culture shock. Anyone looking to got to China for Stem Cell Therapy, I highly recommend China. The hospital and Beike staff were awesome. They were always there when we needed something and even when we didn't.

A HUGE thank you to my mom for taking us to China and being the best Grandma. Also a HUGE thank you to everyone that supported us financial and with extra prayers.

THANK YOU THANK YOU THANK YOU

I will continue posting on Joey's progress as we see changes. Now time to start saving money again for another trip.