Macie’s ONH Blog (2nd)

It’s the day after my spinal.  Everything went well they got my IV in,  I thankfully went through a whole back of fluids before I went under.  Bradley had me try to say something while they were putting me out, it was pretty funny.  Anyway last night after my six hours I got up slowly to go to the bathroom and it made me a little pale and achy but that was just because I had been laying down for 6 hours.  I went back to bed after that.  When I woke up this morning, about 7 I felt pretty good I’m still a bit stiff but that I can handle. 

   Mom and I just got back we went to go get a coke and some ice.  I’m just hangin out in my room playin on the computer I dont really feel like doing much so mom went with some other parents and went to some different places.  Well I will update later and let ya’ll know how everything is goin See ya:) Oh almost forgot, mom is working on getting our pictures up so hopefully soon we can have them posted, ok bye:)

After 3 bags of water and laying in bed I feel like i could run to Kentuky and go see my new uncle keith, who i met here in china, he is one of the greatest people i have ever met I love him so much!  Anyway I’m driving mom crazy she’s had to do everything for me because I’ve been in bed for five days I think she’s pretty relieved that I feel great now! It’s the weekend so I think mom and I are going to go do something tomorow to get out for a while before I have my spinal on Monday.  The only places mom and I were eating at KfC and Pizza Hut, well today I was eating a chicken nugget from KFC and I choked on something harry and sharp, so that rules out KFC so now mom and I are going to be living off Pizza Hut and Easy Mac. 

   Well, I think mom and I are going to go watch a movie.  The internet will be down for I dont know how long but when it comes back on I will update again,  until then, See Ya:)

love Macie

Well we are half way done!!  Macie and I are so ready to go home.  We miss everyone so much.  Macie had a headache for most of the week but this morning the doctor gave her three bags of fluid so she is feeling much better and would love to jump up and run around.   She has two spinals left and then we are done!!  She has been very fortunate to have some improvements so fast.  Our main contact from the US is coming tonight or tomorrow so hopefully the next injection will be better than this last one.  Well, it will be because I won’t let them touch her unless she is fully hydrated.  That seems to be the “key” with her.  Next week we are hoping to get a break from the hospital and maybe hire a taxi and translator to take us to the mountains, they look so beautiful from the city.  

I just found out we won’t have internet for the weekend so I better get going.  It looks like we are going to have a great night Macie is feeling good so we will be back on when we can.  Love you all and thanks for everything.  Macie loves to hear from all of you, so thank you very much.  Keep us in your prayers…we need it!!

 Love Shel

Hello friends and family…Macie told you some of her news and I wanted to let all of you know that she is seeing a little further than when we got here.  We did some eye tests today and in 2 and half weeks she has improved from reading the first 2 lines on the eye chart to now the first 3 lines.  She is very happy about that to say the least.   We are just so thankful to see results so quickly.  It’s been good for Macie because she told me today that deep down she did not think that this would work.  She said she hoped it would but deep down she felt like nothing would happen so you can only imagine how excited she was when she noticed she could see further, and even though she didn’t feel good she wanted to celebrate so a bunch of us went to Pizza Hut for lunch and Jennifer took her to a dress shop where they make you a dress from scratch and shes doing it, Macie Marie is getting a dress from China for her next formal.  She also plans to spend her summers in Kentucky with her new additional family.  No joke!!  Anyway, it was so amazing to watch her describe how she’s seeing more. 

Unfortunately, she has been very sick since the last spinal, so we are going on 2 days of lying in bed and no relief yet.  I’m relly upset with how this is going in terms of consistency.   Nothing is consistent, I never in a million years would have expected any hospital to be so random.  I was so stupid to think that, but the stemcells are working and Macie is happy so that makes it a little easier to take in.  I’m sure the staff has me on their poopoo list at this point because I caused a bit of a scene the other day in the lobby with the doctors but I get upset when I don’t understand certain things.  I will say that they were great, handled everything fine and assured me that it wouldn’t happen again and I know in my heart that they mean it and that they are doing their best.  They want this to work as much as I do, its just that we are very used to America and how its done and even though we shouldn’t compare its hard not to.  Sorry this is so long it’s midnight and I’m babbeling along.  Goodnight and thank you for all the prayers and support.  It’s working…Macie is improving and for that I am forever gratful.

Love Shel

On Monday I had my 4 injection.  It didn’t go very well.  It all started when it came time to get my IV.  The nurse came in and she couldn’t find a vein she looked all over, on my hands, arms feet, so she said she would come back with another nurse, while I was waiting i covered myself in laticane I wanted to be prepared for where ever they were going to stick that needle in.  When the nurse came back the first time they tried in my right arm and didn’t get the vein, then they tried the other arm and didn’t get it, finaly they tried again on my other arm and got it I was so relieved! Normally they would hook up fluids to me but they didn’t this time for some reason.  Mom asked and then she sent me to ask and they told us no, that I would get it after, so we went with it.  After my spinal I felt horrible I had a headache and I was sick.  It was the worst one.  Mom says I was sick because I wasn’t hydrated at all so she made sure that the doctors knew she was not happy.  She told them that she want’s my spinals spread out and that the next two spinals I get she wont let me go util I have had fluids.   The head nurse came in and said sorry and one of the doctors,  Dr. Lisa, came in to.  We got it all figured out.

   Yesterday was one of the most amazing days of my life.  Mom was talking  on the skype with tia and tio jay so I felt like right in the journal that we got.  I went out and sat down at the little table and started writing, not noticing that there was something different, I kept on writing and then I noticed it I was half the distance away from the paper as I normally was.  I couldn’t believe it.   At first I thought I’m just rereading what I’m wrighting in my head I’m not really seeing it, so i went in to my room to have mom right something and see if maybe I was seeing it but she was talking and so I just thought never mind.  I went back out and started right again and this time I read 3 sentences and so I ran into the room and I showed mom and then i had her right something on the paper and I could read it about 12 inches from my face:)

Today was little rough.  We started out with the nurses not being able to get her IV in and with Macie’s fear of needles that wasn’t fun, but she had covered herself with Lidocaine so she got thru it.  The injection process went fine but this time after her six hours she is very sick.  At fours hours past injection she was starving and I went to fix her dinner and when I came back she was telling me she was sick.  I’ve got her sleeping again so hopefully that will work.  Other than that she is doing well.  Still just the nystagmus change is all we have noticed but we know not to expect anything for at least 3 months. 

We miss home and it is so very hard for her to not have Easton around, she misses him more than anything.  So having Bradley’s friendship has made all the difference in the world.  In a way it’s another type of healing for her.  She has met someone about her age with the same diagnosis who lives many of the same experiences and they can, and do, talk all night about anything and everything.  Amy, Bradley’s mom and I let them hang out a little while they are going thru their six hours.  We just wheel Bradley down to our room so they can visit, it helps a little but its still hard to keep them flat for so long.

I’ll try to be better at posting I just like it when Macie does it but she’ll be down for a day or two so I thought I would help her out a little.

Thanks everyone for all your support and prayers!!!  We love you all so much and we miss everybody!!!

Shel

Today at 11:30 I have my 3rd spinal, which is my 4th injection.  Mom and I got up at about 5 and fixed breakfast for me because I’m not allowed to eat anything six hours before.   I cant believe I’m over half way there.  I have 2 more spinals and then I’m done. 

The pictures that my camera takes are way to big for my blog and I don’t have the program to resize them so I have all of the pictures on a website.    if you click on the link below, there is a bunch of pictures, from the time we went to Polar World to today.  I’ll keep on putting more pictures on there as i post.  http://www.bubbleshare.com/album/425099

A couple of days ago mom and I went and met chis and his wife Diane, the owners of Greese Monkey. They where really nice.  He and his wife took us to, what must have been a 5 star hotel and had lunch, it was so good.  After chris droped us off at Jesco so mom and I could walk around down town. there are tons of little stores everywhere, I got a shirt that was kinda girly, mom was so proud:) I had some headaches in my head and back but it wasn’t to bad, other than that everything is great.

   Yesterday me, mom, bradley and his parents, and shreya and her parents all went out and did some site seeing.  Mom and I got a couple movies for a dollar that where hoping are in english. We also walked around a bit, were getting more and more brave to go out on our own without someone with us.  Anyway after we met up with everyone we went and had lunch at McDonalds and walked around a bit more.  Today I have felt great and it sounds like I will have my next spinal on Monday and then I get a 7 day break which will be nice.  Well I think I’m going to go relax for a while I’ll talk to ya’ll later bye

The old one wasn’t letting us download anymore pictures so we asked jesse if she would make me a new one and she did so here it is:)