Allie’s last week schedule
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Add comment June 22nd, 2008
Archive for June, 2008
Saturday update
Hi Tina, I was going to write last nite but only one(of the two) computers works for me to get hotmail, and it was tied up. Allie had a better day yesterday, she had slept 11 hours the nite before and then took a 4 hour nap and last nite she went to sleep at 9’30 and is sleeping now at 6 am. She got out with Tait yesterday in the stroller and was a little more cheerful. Its hard on her though,she is tired of being poked and prodded. On days she has treatments, we try to keep her from sleeping too much cause she must lie flat for 6 hours and its much easier when she sleeping. So I imagine that gets her all off too. And as I said her head is a little sore I think from accupuncture. All in all she had a good day yesterday, ate better, though she is being a typical 3 yr old buttoning up for veggies and gobbling down sunny day bars. And she is staying regular now, thats good. Today is another free day so we’ll get out again.,will write tonite and let you know how our day went. Hope you have a great visit in PA, glad it is going well for Megan, I can’t wait to see her again. Thanks, more later love Charlotte
Add comment June 22nd, 2008
Grumpy and sleepy
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Add comment June 22nd, 2008
Allie and Grandma time
Well it is 6:45 Friday morning, and it has been a long morning. I stayed with Allie last night. I think Tait left around 9 and Allie probably didn’t get to sleep till 11. Then whe woke up this morning before it was light and i think it gets light here at 4 am. I was very tired so I propped her up with pillows on my bed and then went back to sleep(sort of). Then when it was light out ,she was fussing,probably bored so I laid her down next to me. Lately she has been very loose and relaxed in the morning, instead of in a ball. She laid her head right back and feet straight out, so I thought it would be a good time to do stretches. She was very agreeable and one good thing about hard Chinese beds is they are good for doing stretches with Allie. So I got very creative and did all kinds of exercises with her . Then I remembered how she had’nt seemed to mind rolling with Tom so I started rolling her (one arm up over her head then the other) from one side of the double bed to the other. We went back and forth several times. I think she thought it was a game, cause I would say ok Allie lets rollllll again and she would sort of smile. We did this many times, then I picked her up and gave her a hug telling her how wonderfulf she did. She stood on the bed,legs apart, back straight with her arms on my shoulders and looked right at me smiling. By this time I’m smilling and telling her how beautiful and amazing she is and she put her head back and giggled, all the time standing. So that made my day and made up for the night. Well she is getting tired of waiting for me and my coffee is brewing. More later Charlotte
Add comment June 20th, 2008
Thursday
Hi Tina, Allie had a pretty quiet day today, she didn’t sleep much last night, so took a couple naps today, and felt much better for it. She was scheduled to have therapies today but not tomorrow, and we were able to switch so she’ll have thim tomorrow instead. We are happy that she has done so well with treatments, some people and kids get fevers that last a couple days . We found out that the anethesia she got was the same both times but the first time it was injected intramusculary and the second time intravenously. So for the next time we can choose how we’d like to have it. Meaning if she gets it in the butt it hurts like heck for a few minutes and she probably sleeps well and if she gets it iv then it doesn’t hurt but she may be awake and disoriented after and we have to keep her lying down. Well , more later, Charlotte
Add comment June 19th, 2008
After effects of the second treatment
Unfortunately, Allie did not do as well with the second treatment. Tait told me that she screamed for nearly 6 hours. The doctors decided (without telling Tait and Charlotte) that they would change the anesthesia since she slept so long last time. Meanwhile, Tait had her skip her nap so she could sleep long! She needs to lay flat anyway, plus it was night time. So the result of this was hours of screaming and apparent discomfort. The language barrier is a real problem. There are not enough translators and when there are, they can’t always understand either. I’m on the phone and the net trying to resolve this as I am trying to control my anger. Speaking of anger, there is an awful, obnoxiously loud Romanian woman who yells outside the room each night. Tait told her off. Apparently there a lot of people upset by this woman, so they will be addressing the noise level with Wendy (translator and a coordinator(?). Anyway, things are stressful there. Hopefully Tait and Allie will get some sleep and things will simmer down a bit. Still no word on when and what the next two treatments will be … and there are 9 days left…again a lack of communication.
Tina
Add comment June 19th, 2008
2nd Treatment
2nd stem cell treatment went good so far. It was a little frustrating. They put the anastesia in her IV but I did not know that was what they were doing. I thought they were flushing the IV. Directly after that they took her away and we were worried because it was different than last time. But she came out much sooner and all is good. She has a much larger IV fluid bag this time. This is good, she needs the fluids. I wanted more last time but no way to communicate this I went to the market today with Tonya and Harley, have to go every other day because there is only enough space for two days of food. The yogurt is good we have all had it and no problem. The grocery market has live fish,frogs, turtle and various shellfish. also has all kinds of organ meats; heart, liver, and stuff i cant identify. We buy normal (American) food. I do feel all better now too. Thank goodness. The nurses are great they look for such a long time before the IV and call in other nurses but get it first time. Other parents say the same. I cant wait till we pull in the driveway. What a world away that is ( literally) that will be the end of the trip. But for now we will continue our adventure.
love tait
1 comment June 18th, 2008
Being a 3 year old
Hi Tina, its 8;30 here, Allie is being alittle difficult to get to bed. She has been fussy since 5. Tait just got her up and brought her into the lobby and she had a big smile on her face. What a stinker, now I see the 3 year old in her. She just wants her way. I hope you got the email with the photo,isn’t it great. Today wasn’t a great day for her, fussy in general but then tonite as we were trying to get a last meal in to her I tried to distract her with her pooh bear toy and again she started smiling and it lasted thru about 10 songs on pooh bear. So we are seeing these highlights in our days with her. Oh and when she was smiling tonite she was also giggling several times. Tomorrow stem cells again,I know thats wahat were her for but I just hate it. Can’t wait till its over. I can’t even imagine how much Megan must be changing. We don’t have alot of time to think of anything except whats happening here. I have been drinking Chinese beer(no sparkling wine here), Tait said to Allie tonite “you’re turning your gramma into a drunk”. Well it does take the edge off. Were half way thru all this-and I think we will leave with some incredible memories. More later Charlotte
Add comment June 17th, 2008
More smiles!
Tanya got pics of allie smilling this morning in therapy! Allie was crying alot as usual and then tom picked her up on his lap and she smiled at him. I was not there , in kitchen making breakfast. She was still grumpy yesterday still needs to do ka ka more, but not crying terrible for bed. Afternoon therapy is mild because she sits in our lap for electric wave and accu. Yesterday she sat in Tom’s lap for accu. while jason (the accupuc. guy) did the inserts. Soon she got uncomfortable and I held her. She still gets the accu. in the same spots on her head. The cells must be doing something because the smiles are longer and now more often . Iwill certainly let you know as they happen.
Tait
Add comment June 17th, 2008
