Hi Tina, Monday morning here, Allie just finished her morning pt. She did really good. That position I told you about with legs apart,back straight , arms straight up- she screamed and panicked the first time she did that. This morning not a peep she just sat there for the whole 5 or 7 minutes and looked around at other people in pt. Just shows what repetition and consiseancy can do. We just learned that stem cell are late Allie has been postponed till 8 this evening, which actually is good, we have time to get more food and fluids into her. Tait and she overslept this am and she hasn’t had much. She finally ran out of pear sauce we just borrowed some from the boy next door. I hope treatment isn’t postponed any later, you never know here. And we don’t know if its a weather issue or what. Will keep asking questions thru the day. well more later, I need to get some breakfast Charlotte
June 24th, 2008
It appears mom has given some updates. I went out last night to the paradise club. It was Danny’s birthday. Aout 10 people including Amanda, Wendy and jack. After dinner we all went to dance club, had a good time but I drank way too much. Got back to the hotel around 1am. Feeling better or still buzzed. Allie is loose this morning. I better go and relieve Grammy she has been non stop for a while.
Tait
June 22nd, 2008
|
| Hi Tina, 4;30 here on Sunday, we have Allie’s schedule for final week. She gets spinal on Monday and IV on Friday. I was kind of surprised that she would have a treatment on Friday considering were leaving on Saturday but the people next to us said the iv’s are very easy on kids. Allie woke happy smiling and very loose this morning as usual. So we did stretches and rolling. We have noticed that she is much looser in general but also more floppy. Tait said that he had read about a little boy with cp who had the same thing happen after treatments, I guess its a good thing but she will need therapy to build up her muscles I would think. This week I will get on the therapy table and have Tom show me exactly how to do all the therapies he does with her, I have been taking pictures, but its best to be shown how. Allie has been sleepy today and is taking a second nap with Tait. Earlier She played with toys in the lobby and then sat with a little Chinese boy that was playing and just watched him. Then I took her down to Jen’s room and we laid Austin and Allie on the bed to see if they would look at each other. eAustin wasn’t interested and Allie didn’t want to lie down. Oh, well. Tonite I am cooking an American meal,Chicken(though I’ll have to cook it in a fry pan} mashed potatos,broccoli and salad. Hope all is well ,Charlotte |
|
June 22nd, 2008
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
June 22nd, 2008
|
| |
| Hi Tina, you proably won’t get this till Sat. am. Allie is taking a mid morning nap . She had a rough day Friday, didn’t sleep or eat much, but got to sleep at 9 and slept til8. Her tummy might be alittle upset. She was happy this am until she ate and then was complaining, but as I said is now sleeping.. Alot of people complain of upset stomach and even vomiting 2 and 3 days after treatments. And of course alot of people have run slight fevers so I think she doing pretty good. She really screamed when I brushed her hair this am, I think her head may be alittle tender from the accupunture sessions(she always has it in her head), so I will be very gentle with her hair .I am sure she misses you and in the morning I give her lots of kisses when she wakes and tell her they are from mommy. We are all getting anxouis to leave. Hopefully this last week goes by fast. Will write more at the end of the day. Charlotte |
|
June 22nd, 2008
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
June 20th, 2008
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
June 19th, 2008
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
June 19th, 2008
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
June 18th, 2008
June 17th, 2008
Next Posts
Previous Posts
