Carlie’s SOD Blog

5th treatment…done

June 1st, 2009

Today Carlie had her 5th treatment by IV. It went very well. It was only her and her friend Ty in the IV room. It usually takes Carlie about 2 1/2 hours but today we were out in 2. Carlie’s friend Bailey left today and she has been a little lost. She woke up early to say goodbye and then came back in the room and laid on her bed until she went back to sleep. She definitely misses her alot. Good thing there is still some kids here for her to enjoy! It always feels so empty when someone leaves. We miss them so much!

Anyway, Carlie will have her next treatment on Friday, which will be a spinal. It should be our last spinal. then we will have one more IV injection. Then we will go downtown to repeat the testing to see if there is any progress. Of course we know that these stems cells take time to grow in her body and we could see results for up to a year or so. Some people do start seeing results while they are here. We have noticed Carlie doing some things that are out of the ordinary and today they did an informal acuity eye assessment. But I don’t think they took good notes. when they did the first one before stem cells they could not tell us if they saw any improvements. that is just one of those things we have been talking about. When you come here, you are NOT in the US. I am used to seeing a doctor and them noting everything. In China they will come in take your temperature or blood pressure and write it down on a scratch piece of paper. You never know what actually goes in the patients file. They do have a chart for each patient it is just that you never know what is going in it. Anyway I do have her results from the eye hospital so I can not wait to go back down there to repeat those.

We try not to ask Carlie are you seeing different. We want her to tell us things she notices. We feel if we keep asking her it could make it to where she is saying it to make us happy and that is not at all what we want. She has told us that an object that she saw had more detail.  For that this trip is worth it! Time will tell exactly what these stem cell will do for her little body. I will post as we know more.

Keep our friends who left today in your prayers as they travel back to Florida

Entry Filed under: sod,Uncategorized