Posts filed under 'ataxia'
3-17-09 still…
Joey’s doctors felt is was necessary to have a MRI done on Joey’s spine so we were sent to another hospital about 15 minutes away. We jumped into a small car with Dr’s. Amy and Tony and with the driver. They want to make sure that the curve of Joey’s spine is not keeping the stem cells blocked off from certain areas. We will hear the results tomorrow. On the way back to our room the driver was kind enough to stop at KFC (Joey wanted chicken again, hahaha). I think Joey has gained at least 10 pounds since we’ve been here. He looks pretty healthy,,,,now if I can just get him to sit outside every now and then, maybe he won’t look so ghostly.
more later….
March 17th, 2009
3-17-09
HAPPY ST. PATRICK’S DAY EVERYBODY & TOP O’ THE MORNIN TO YA!!!!
Joey and I slept a little bit better last night. We were both pretty tired. We got up and like always went to PT. Joey has been having a few problems with his left knee lately so he won’t get to do the standing table until it is better.
The doctors came in this morning to discuss the next step….we still do not know when the last SCT is going to be. Joey may end up having to do another lumbar puncture instead of the IV SCT. It depends on if they can get enough stem cells (for an IV) before we have to leave. Joey and I feel that it is important to get the last one over with several days before we have to get on a plane to come home. I don’t want him in pain during that 19 hour flight.
The count down is on. Only 15 more days until we get to go home. And it will be soooo nice to go home. Joey will have to continue exercizing and building his muscles so that the stem cells can continue to grow. I will arrange for more Physical Therapy on a continuous basis. Also, Rick has been working hard to turn our garage into a gym for Joey while we’ve been away. It is going to be great.
It may not happen before we come home but we still have an unshaken belief that Joey will walk again before this is all over so keep the prayers coming.
much love to all….
March 17th, 2009
3-16-09
Today Joey had PT as usual but OT is cancelled until Tuesday. Massage will be at 2:00. Joey never did have any side effect from the local stem cell injections in his legs. He seems to have better circulation and sensation…..
Neither of us slept very well at all last night so we are both tired and irritable today. Maybe we will have better luck tonight. I also believe we are getting on each others nerves. It’s hard sharing a room for 2 months with your 24 year old son, or for Joey, your mother……
Anyway, nothing new to post right now.
more later…..
March 16th, 2009
3-13-09
Hi everybody. Sorry I skipped a few entries. I believe the site has been having problems.
Anyway, last Thursday Joey talked Mark into unstrapping his knee while he was on the standing table. Unfortunately, Joey will need to work on strengthening the muscles in his legs. He was unable to hold up his own weight. He will be working hard for the next couple of weeks on that.
Last Friday, Joeys doctors plus several others came in to our room as we were getting ready to go to PT. The doctors wanted to try something new since Joey has such pain after each lumbar puncture and the IV SCT isn’t ready yet. They said they would come back for him at 3:00 p.m. for some local stem cell injections to his calves and ankles, OUCH!!!! At 3:00 p.m. they took him away and he was back in 15 minutes. Joey said “it hurt like hell”. Luckily, there was no pain (after injections) and it seems that the circulation and sensation in his legs are much better. Since Joey is doing good after these injections we will try to go to the zoo & and; Forbidden City tomorrow.
Saturday we woke up early and got ready to take a trip to the Zoo, Forbidden City and to do some shopping. Our van driver brought a guide who speaks english that can tell us more about the sites. Her name is Lucia. We were out from 9:30 a.m. to 6:00 p.m. We had a wonderful time. We went to a silk store where they make silk products like bedding, clothes, carpets, scarfs, etc… After that we went to a Jade store where everything is Jade (I love Jade). Before heading back to our room, we stopped at Kentucky Fried Chicken and bought a bucket of the best food we’ve had so far. At the Beijing Zoo, we were so excited to get to see the Giant Pandas. I wish I could take one home. They are soooo cute. It was a super great day. Joey and I are exhausted. I will be sending everyone pictures soon.
Hugs & Kisses from Beijing.
March 14th, 2009
3-10-09
Today was a pretty kool day. Joey popped up and got ready for PT. He did great. Mark started some new exercises but didn’t put Joey on the standing table. After wards we went back to our room and had an early lunch and Joey took a nap while getting his two IV’s. He had his usual OT and massage as well. Later this afternoon we had four of Joey’s doctors come to visit and discuss what will happen next. It usually takes 2 weeks to get enough stem cells for an IV treatment so looks like Joey will be busy still building his muscles and strength while we wait for the treatment. The doctors said that Mark (PT) will be trying to help Joey to re-learn how to walk. WE ARE SO EXCITED!!!!!!! THIS IS WHAT WE HAVE BEEN WAITING FOR!!!!!!! WOOOOHOO!!
I am not sure if this means he will put Joey on another machine or what but he is ready.
Thank you EVERYONE for your comments.
More later….
March 10th, 2009
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