Posts filed under 'encephalitis'
Allie has had some mild improvements. Those big smiles she had in China show up sometimes, but less often lately it seems. She seems to have more energy. But what came with this a terrible time getting to sleep. She was fussing for up to 2 hours each night before going to sleep before China. But we were seeing 2-6 hours of screaming and fighting before bed since the return from China. We finally relented and are using Clonipin prn before bed. Now she is a bit more foggy during the day. She still has high, tight tone, but it has gotten better. She is looser, esp. in her arms. She actually held a push up for quite a while last night on Tait. She is tolerating standing more and even took some steps in the gait trainer. Her vision therapist at school feels her vision has definitely improved since China. She is now making definitive choices with her vision. We have also noticed some intermittent verbalizations/ babbling. We hope there is more to come, especially improved trunk control and decreased kyphosis and prevention of scoliosis.
We are temporarily moving to Orlando, FL for Conductive Ed (www.cecfl.org). Our plan is to leave Mass. on Aug. 23 (the 3rd anniversary of her first EEE symptoms) and stay through early Nov. We will decide if we can stay in FL for the program while we are down there. She needs the intensive therapy they can give, even if it costs us plenty.
Our email is taitntina@verizon.net if anyone wants to keep in touch.
Tina, Tait, Allie and Megan (and Grandma Charlotte)
August 13th, 2008
Allie, Daddy and Grammy arrived Sunday morning as scheduled. Allie did so good on the nearly 30 hour excursion. But she did melt down when she was driven from Logan airport. But she gave me the best smiles when she saw me! And of course smiles for the doggies too! Allie’s sleep has been WAY off. She was up 2 am-1 pm today and has been sleeping from 1pm to now (9 pm). I think we are in for a heck of a night! We are just so happy that everyone is home safe and sound.
Tina
July 1st, 2008
Allie, Tait and Charlotte are flying from China to Los Angeles as I write this! They are so happy to be coming home and I CAN’T WAIT!!!!! Allie did well with the IV treatment after they found a vein. The whole gang there had a big taco supper together and said their goodbyes. Meeting such wonderful people made being away from home bearable and even enoyable for them. It shows us that bad things can happen to good people, yet hope and strength still lives on. None of us will give up. So far Allie’s tone is already better and it seems vision too. Plus those smiles were worth the whole trip! Any changes that happen with Allie will be gradual, as the cells need to grow and multiply and lots of therapy needs to be done to train her brain to complete tasks. It is still a long road ahead with the need for therapy, repetition, adaptive equipment, bracing and lots of LOVE. Thanks to everyone who helped us with this journey, especially Mr. Ray Tye who funded the treatments. Also our friends and family for their constant support and successful fundraising, including our friend at John Adams HealthCare (my work), Knights of Columbus, Katrina Bernard (Miss Derry) and Jan Ferrigno and our new NH friends, Auntie Lori and Courtney and everyone who had a hand at making this happen. Our next step is conductive education to train Allie’s brain. I’ll let you know when they land.
Love
Tina
June 28th, 2008
Allie’s IV was tough today. I had to yell out stop! Take it out! They were poking and twisting the needle and she was screaming so much. The head nurse came in and got it first try. Now she has been sitting and waiting for an hour with IV fluid and a drug of some sort prior to the stem cell injection. They will do it soon I have been told.
Tait
June 28th, 2008
Mom is quite the socialite. Her and all the other gals are drinking beer and chating.
I asked if they would do accu. for allies constipation before but they said that her brain was the priority. Allie went down tough tonight. We are preparing to go, packing and getting Allie’s clothes totgether.
Did you know that the babies run around bare bottom here? It’s very cute their little butts hanging out. We went out for a walk to olympic park again today with allie. Allie was good again today. I would like to say more but it is late and I better head for the hotel.
Tait
June 27th, 2008
Allie is napping. We had a good night. Allie is perky today. The day after treatments is rough on all patients but she bounced back. Allie did get acupuncture yesterday, she did not cry as bad. also i had the electric wave hooked up to me a few days ago,they put it on my arms for 5 min. it made my muscles contract but did not cause discomfort.
We’ve met so many great people. One man is a science professor with two PhDs and one master degree. He is a very nice man, who was diagnose with ALS about 18 Mon. ago. He could not speak well and lost control of his hands. But after the first treatment he got his voice and hand control back!
Some people have gotten accu.for headache and back pain. I got a massage about a week ago. I got it from the “medicine man”. The guy killed me, so much pain almost intolerable, it was like acupressure, deep tissue and full chiropractic. I felt great after though. One of the Mom’s got one too and said the same thing. He also called in the translator and told her that she had liver and kidney problems and that she had to stop drinking soda and start eating better. One of the therapists can diagnose any problem by looking in your mouth and at your hands. He told one mom that she had heart problems.
More to follow.
Tait
June 26th, 2008
Allie had a good day today. We went to the park. It was realy cool. Then 8 of us went out to dinner. It was great! Allie did awsome. I’ve got it on the video. The food came out on a lazy susan in the middle of the table, and we all had flame lit boals in front of us. The food is raw and it cooks in the bowl. We had beef, lamb,live scallops,clams,lamb,spinach,lettuce,shrimp, potatoes, three diff. mushrooms, tofu and a few other things. They had five waiters attending to us the whole time. They put whatever you want in the bowl and you take it out and put it in your choice of dipping sauce, and eat. The meat is very thin slice so it cooks fast. Allie ate alot of stuff; beef, lamb, potato, tofu, and was very attentive the entire time. She was in her stroler with sm. brace. wheeled right up to the table.. So was Austin.,very cute. There is a fish tank that the seafood comes from. An experience i will never forget. We drank alot of beer as well. The whole meal was less than 500 yuan! Allie was so cute walking back, lots of neon lights she was looking at . I gave her a bowl of yogurt mixed with the baby cereal (her new favorite), a bath and we went to the boy’s room next door to share our experience. She watched him play for a few min. then i put her to bed. No crying, right out! Well it is now 1100 pm and I must go to bed.
Tait
June 26th, 2008
Little Allie was still crying last night at around 9:30pm. So I got her up and brought her out to the social area. There were people out there. Allie perked right up almost smiling, that little stinker! She likes getting her way. I made her a big bowl of yogurt and baby rice. She ate the whole thing, all the while pushing her feet into one of the boy’s legs. I think he liked the attention. Jen is so impressed that Allie pushes with her legs. She was very perky till around 10:30 pm, everyone else was tired by now and going to bed. Allie slept good . I over slept until 8:30am, but Ineeded it. I heard Gov. Schwartznegger publicly gave the middle finger to Bush and said he will fund the first hospital in the US entirely dedicated to stem cell research and treatment! We went to the park with Allie this morning. I video taped the walk. Very sunny today for a change, and hot, the AC is on but goes off alot to. Allie is having a hard time falling asleep. One child screams very high pitch, right out side our door. It has been a tough trip for her. I am thinking of not doing accu any more she cries so much she is so sick of having people hurt her. The IV (due Friday) is injected, no blood taken out, just a flush. maybe they can do some fluids as well if it does not effect the stem cells. I have not been eating much veggies here , afraid of getting sick, a nice big organic salad would be great, mostly have been eating junk food; chinese fast food,pizza, beer (lots of beer) mom too. pPB and j, grilledcheese. regular meals will be great.
Tait
June 25th, 2008
Allie ate some yogurt and sunny day bar, seems better. She needs to sleep though. I think she has really had it by now. The iv last night was rough second try worked but she was freaking out before they stuck her and really got upset when they got it in. She cried a lot when they removed it today. She seems very homesick and has not been happy for days now. Some people are getting more treatments while here, but Allie can not tolerate any more and it is good that we did not get 5 or 6. There is a child here about 10 and she had an accident that left her severly impaired, bed bound and no speaking or movement. After the first treatment she has vocalized for the fist time, and after a few more treatments she now won’t stop making vocal sounds!
Mom is walking Allie up and down the halls. I must get her to sleep before accupuncture. She is so sick and tired of having people poke her. She pee pee her diaper so much last night that it soaked the bed. The laundry is so gross that we have to hand wash everything. I had Amamda tell the laundry people that they do a bad job and i will not use them again. Another parent expressed his disapointment as well . Some people just wash there own and hang it all over their roooms to dry. Dany’s camcorder is the same so he charged my batery and now i can continue the “movie” . It will be fun to get everyone together to watch it on our TV.
June 24th, 2008
Tait said Allie’s treatment went well so far. It was only an hour after it that I heard this though. It was given via spinal at 8pm Monday (China time) and again, she needs to lay flat for 6 hours. I hope that is going well. Will follow up as I know more.
Tina
June 24th, 2008
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