Macie’s ONH Blog

The blog I’m using right now is being wierd and it wont let me download anymore pictures so I’m going to start posting on a different blog that jesse made for me. http://blog.stemcellschina.com/macieinchina

Today was Macie’s 3rd injection and it went very well.  Getting her to sleep is a little hard but we are working on it.  This afternoon was fun because we moved her friend Bradly in so they could do their recovery together.  It has been a blessing to have the stemcells and to see improvements with her vision but it’s been even more of a blessing for Macie to make a friend who also has ONH.  Bradley is a great kid who has touched Macie’s soul.  The two are inseperable.  There are just so many neat people here for all the same reasons.  This morning we had a huge breakfast for everyone and it was a blast.  We basically cook on high class camping equipment but it was a blast.  Anyway, things are going great we are surrounded by great, funny people.  Thank you to everyone who helped get us here and who are supporting us back home.  We love you all.

Parris here is my address: rbikandi3@msn.com   Thanks again everyone we love you all

On Sunday which was 2 days after my spinal my eyes are becoming a little more steadier and when we were in the mall the lights were really bright, mom says that’s a good thing that my eyes are seeing more light. In my left eye I think I’ve got a little bit more light perseption which is AWESOME! I finaly have got my appetite back for a while everytime I would eat something I would feel sick. I have felt really really good and have a lot of energy. A bunch of us went to Polar World on Sunday and we all had fun there was a dolphin show which was really cool me and bradly, since there was no seats left, sat on the sides of the stairs in the very front so we could see it, it was amazing I had a blast! Then we walked around and saw sharks and sea turtles, penguins, polar bears, and some other animals, it was so much fun! Yesterday mom and todd went and did some shopping and stuff and me and bradley stayed at the hospital and just hung out. A lot of people had there spinals yesterday I think me, bradley, and one other are the only people having ours on Wednesday. Me and bradley are going to pull an all nighter tonight because of the spinal tomorrow everyone says it really helps so I’m going to give it a shot. Well I have to go im going to go mom whith picking up. See yaOn Sunday which was 2 days after my spinal my eyes are becoming a little more steadier and when we were in the mall the lights were really bright, mom says that’s a good thing that my eyes are seeing more light. In my left eye I think I’ve got a little bit more light perseption which is AWESOME! I finaly have got my appetite back for a while everytime I would eat something I would feel sick. I have felt really really good and have a lot of energy. A bunch of us went to Polar World on Sunday and we all had fun there was a dolphin show which was really cool me and bradly, since there was no seats left, sat on the sides of the stairs in the very front so we could see it, it was amazing I had a blast! Then we walked around and saw sharks and sea turtles, penguins, polar bears, and some other animals, it was so much fun! Yesterday mom and todd went and did some shopping and stuff and me and bradley stayed at the hospital and just hung out. A lot of people had there spinals yesterday I think me, bradley, and one other are the only people having ours on Wednesday. Me and bradley are going to pull an all nighter tonight because of the spinal tomorrow everyone says it really helps so I’m going to give it a shot. Well I have to go im going to go mom whith picking up. See ya

Macie got up this morning a little groggy but after a couple of hours she was ready to go and when we were preparing to leave she looked at me really funny and started to giggle and jump up and down because she could feel her eyes were easier for her to control and the shaking had slowed down.  Then she looked at me and said, “I can see the green in your eyes.”  So haven’t seen her much since she is going nuts with the kids right now.  I’m so happy for her that she has had this little break through, it has made all the needles worth it.  I’m sure she will write more later.  Love you all…Shel

Hi everyone…I asked Macie if I could just write a little bit on her blog. 

I’m really proud of her for going through this procedure, it hasn’t been too bad but it is a little draining and scary for her at times because of her fear of needles.  Acupuncture is not at the top of her “most fun things to do” list. 

She has over come her fear of needles and is becoming a little more relaxed.  The doctor has been very personable and that has helped.  The other day for her spinal he looked right at me and said she would be fine he would take care of her and I could tell by the look in his eyes he meant it.   I was a little nervous but that made me feel much better.

The staff is wonderful, the weather is less than desirable but when it’s somewhat clear it is beautiful.  The Chinese people are so interesting, it really is amazing how they live, and they are very kind.  I have so much respect for how they function and co-exist with each other.  However, they have no rules when it comes to driving, it is a game of life or death at times. lol No joke!! 

We have been very blessed to meet many stemcell patients who have had so much success that we are even more hopeful now than we were before.

I’ve been taking Macie out as much as I can with some really good friends we’ve made.  Todd and Bradley are taking really good care of us and Macie and Bradley are pretty close so we do a lot with those two.

We found a hotel that has good cheap food and then there is a place to hit golf balls right next to it and so they hit balls to pass time.

Today was like winning the lottery, we found a store with Dr. Pepper and American food and then we had lunch at a McDonalds.

We then went down to the beach where Macie and Bradley were treated like celebrities, it was so funny, Macie is blonde, and Bradley to them is Harry Potter, it is just hilarious.  I think the kids love it. 

Ok, well Macie keeps asking if I’m done so I’m off to sleep on my cement slab after a long day in the garlic express.

Thanks everyone for helping us make this possible for Macie.

Hey Everyone!  I’m really scared and at the same time really excited today because I’m going to have my first spinal injection.  I’ve been doing my acupuncture pretty good ever since that small melt down that I had, it’s not so bad.  This first spinal there going to put me to sleep and  the wrest of them I’ll just be numb.  There are several other american family’s that are leaving today so we all went out for dinner last night and then just to get our minds of things we went and hit golf balls, I tried to learn how to hit right handed but it didn’t work out to well:) Since my first IV injection I’ve been really tired I’m constantly sleeping.  Everything is going good foods good mom and I are going to go cook breakfast for a few of our freinds.  When we get home me and mom have video taped how the chinese people it’s so crazy it’s hard to imagine, last night had to be the worst one we were driving on the wrong side of the road for a while.  Well I’ll update after my spinal tomorow i wont be able to move for 6 hours but I’ll let everyone know how it went tomorow. Bye

Hey everyone:

We arrived in Quingdao last night around 10:30p.m. mom and I were exsausted so we got a little bit of sleep last night and then this morning I had blood work done it came back all good and then I got some exrays done and after a while I got my first stemcell injection which wasn’t so bad.  I’m getting over that fear of needles you kinda have to here.   This morning I made myself so nervous I made my self sick.  It was not good but the IV was ok I didn’t freak out to bad on that thankfully.  Anyway we got pizza and rice for lunch FINALY something that tastes good.  I can’t even begin to tell you how bad the airport food was, owell were all settled in the room and I’ve finally made some friends who are like me.  Tonight Jessy is going to take us to the market and some other places so that should be fun I am finally calming down because I’m all done with poking needles until Friday.  Well I think I’m gonna go take a nap Were all really tiered. Bye

Hey everyone! I leave for china TODAY:) I’m keeping myself up so that way I sleep on the plane, It’s like 2 in the morning right now I have a few more hours until five.  We had a lot of video taping yesterday.  Early in the morning we went out to the barn and i rode miles and ran the barrels with color, That was a lot of fun the first round i hit the second barrel but the second round it was awesome!!  After we went to our house and did interviews and more taping and finally we got to the hotel and did a little bit more.  Easton and I are having fun with the time we have left until mom and i leave, we went swimming which was fun.  Having to say goodbye to miles and orion I started crying, owell I’ll see them in five weeks:) I’m so excited even if i wanted to sleep i couldn’t I’m so excited I can’t wait!! Well I think I’m going to go draw for a while I’ll update again when we get there, Bye

Today me and mom did some video taping, that was fun I got to show mom and dad how I barrel race…well they were just practice runs but it was a lot of fun=) We haven’t started packing yet so we’ll probably start packing tomorrow or Tuesday.

I got to meet Kade today, he is such a little cutie!