Hello!
April 18th, 2008
We had quite a day today! It started out a bit rough, but ended on a fantastic note. Early this morning, we were asked to go to the physical therapy room to meet with a dr. that specializes in cerebral palsy. He is a professor here, and works at another hospital. For a minute I thought we were back in the US. He told us that Brayden’s case of CP was severe, his spasticity in his arms and legs is severe, that he basically had no intellegence, and that no surgery or medicine would ever help him. He questioned if Brayden even had any therapy at all at home- he was very suprised when I told him yes. He also told us that he was afraid that Brayden was too old to get the maximum benefits, but that he did believe stem cells would help him. Talk about a shot in the gut! How do you explain to someone that we have been begging our neurologists for 7 years to look into the possibilities of stem cells for Brayden? Each and every time, we were told that there was NO chance for Brayden, especially not stem cells from a third-world country like China! I cannot express how angry it makes me when they tell us how different a life Brayden could have had if we had only done this earlier! For all of you who are reading this, please educate yourselves and those around you about the truths of stem cells. Because of our stupidity, political ignorance, and religious barriers, children like Brayden are suffering- and for no reason other than being uneducated.
Okay, now that I am off of my soapbox, a run-down of the awesome parts! Brayden went to therapy again. Talk about aggressive- but in a good way! He was very sore. He screamed at Jason (the therapist) every time he moved him. Thankfully, they are making a plan for us to take home. He also tolerated the accupuncture much better today. I am sorry to report that I am not able to upload any pics of that to this blog- the file is too big. I know you were all dying to see pics of him with needles poking out of his head! Not long after, we had the opportunity to speak with the COO of Beike- the company that is providing the treatments. That was wonderful. They told us that they had been reading our blog! At first I was a bit nervous, but then it made me realize that they are doing it to better their services. He was very willing to answer our questions, and was right on top of our concerns about the yucky OR! We definately got lucky being able to be a part of their visit.
This evening we got to hang out in the commons area and visit with some of the other families. That was alot of fun. There are people here from the US, Australia, Romania, New Zealand, and Pakistan just to name a few. Very interesting to hear about the different cultures. Jason and I are just hanging out, watching the kids sleep, and enjoying a glass of Qingdao beer. Chris, our friend from Vegas, is our bootlegger. He brings us a little glass in the evening! I tell you what, we were spoiled tonight! I made grilled cheese sandwiches and we had beer! What a treat!! Speaking of treats, we did find out the truth about eating dogs….. IT IS TRUE!!!! They eat dog in the winter bc they believe it will keep them healthy. YUCK!!! I would rather be sick. Will talk to you all soon! Brayden has his next spinal on Monday- Sunday middle of the night for you back home. Please keep him in your prayers! Love to all, The Johnson’s
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12 Comments Add your own
1. Momma Sue | April 18th, 2008 at 8:54 pm
So, I’m not understanding, are they telling you that the stem cell will not help his eye site?
I will get your care package in the mail today or tomorrow.
Can you email the pics of Brayden?
Miss and Love ya
Momma Sue and Papa Jerry
2. Brandy Russell | April 19th, 2008 at 12:19 am
Hey guys! Keep your heads up and know that Brayden has awesome parents, he just lives in a country that is WAY BEHIND!!! Just remember, Luke 1:37 “For with God nothing shall be impossible.” Keep your faith strong and know that prayers change lives everyday and I know there are many going up right now!!!!!! Love you guys!!!!!
Love, Brandy
3. angie | April 19th, 2008 at 1:22 am
So, does the doctor think this will help with his CP? If not, you would have thought they would have told you beforehand. Or was he just saying don’t expect a 100% cure. Hey, Brayden is full of surprises everyday, so don’t let you get you down. If anyone can do this Brayden can!
Love and Miss you~
Ang
4. Amy Johnson | April 19th, 2008 at 2:03 am
Jason & Lori ~ no matter what some doctor tells you…you know that you have been wonderful parents to Brayden & have done so much therapy w/ him. That made me so angry when I read what the doctor said!! There are so many people praying for you guys ~ I just know that this is going to help Brayden in so many ways
We love you guys so much & are thinking & praying for you constantly! Thank you so much for blogging everyday & keeping us posted!!
Talk to you soon,
Love ~ Aunt Amy, Uncle Chris, Kaitlyn, Tyler & Seth
5. Jason Allison | April 19th, 2008 at 3:02 am
Hey Lori & Jason
Just wanted to let you know that the whole fire department is praying for you all and wishing you the best of luck. I finally got the web address so the fire department can track the progress. The fire department is scheduling some fund raisers for Brayden.
Well the best of luck.
Jason
6. Nana | April 19th, 2008 at 3:51 am
We all remember what the doctors here said about Bryaden when he was first diagnosed. They thought he would be a vegetable all of his life. He sure fooled them!! What ever the therapy does for him it doesn’t change our love for him or you guys and Brylie doesn’t care one way or another, he is her bubba. Just keep the faith and come home safe. Love Nana & Papa
7. Jodie Grant | April 19th, 2008 at 4:32 am
We are praying for all of you! You are an inspiration!
Kendall, Jodie, Montana & Morgan Grant
8. Kelly Keegan | April 19th, 2008 at 5:09 am
Hey Guys~
We are so thankful for this blog. It helps so much to be able to hear so often from you. Keeping Grandma Lamb up-to-date and she just marvels at how brave you all are for Brayden. She sat and just giggled at the thought of Jason (being as tall as he is) walking through a crowd of Chinese in a mall!!!!
Seriously, we love you and keep the prayer chain going. Let us know if there is anything we can send you via snail mail.
Love,Kelly, Pat and Kendall
9. Bonnie Hawkins | April 19th, 2008 at 7:03 am
It is great to be able to read your daily blogs, I have read them everyday even though I don’t always comment. When we are dealing with things we can not change all people ever said to me was “Keep the faith”. I actually think grilled cheese and beer sounds pretty good, may have that myself tonight, maybe even 2 beers. My thoughts and prayers are with you, be safe and be strong. Love, Bonnie
10. Erica | April 19th, 2008 at 8:37 am
Wish the news had been better today, but don’t let it get you down…Brayden is an amazing little guy!!! We’re all praying for Brayden and your family! You and Jason are amazing parents!!!
Hugs!
Erica
11. Momma Sue | April 19th, 2008 at 10:38 am
Jason & Lorie, I can’t tell you how proud I am of you and what you are doing. I’m like Lorie, I am so mad at the regulations on medical procedures over here. You guys are wonderful and what you are doing for Brayden shows the everlasting love you have for him.
Love
Momma Sue & Papa Jerry
12. Lori Johnson | April 19th, 2008 at 2:09 pm
Good afternoon in China! I hope all is well today. You guys have a lot to look forward to in the next three weeks. Brayden is a very strong little boy with a ton of friends and family supporting him through this journey. A lot will change in the weeks to come, stay positive! We miss you all back here in Kansas. As always we are looking forward to the next update…Enjoy the next few days off with Brayden and Brylie.
BTY, we ate raw dog today , just for you, and it’s over-rated ~ just add soy sauce!! Love, WJ and LJ#2
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