Tuesday, October 23, 2012

I have to admit I am a bit slow in getting to my blog.  We have been home a little over a week and we have finally returned to somewhat normal.  I had a much harder time with the jet lag on the way back then I did going to China.  Rylan seemed to adapt fairly quickly and I think Alicia is adapting well too.
The rest of the stem cell injections went really well.  Rylan never had any sort of reaction other than some bad cramping from gasping the gas when they sedated him and the one small fever from when he had his cold.  The eye injections that we had worried about never even seemed to bother him at all.  We were so excited the last few days in China.  So many things were happening.  Rylan seemed to be talking more and more and one morning when Alicia was walking him he refused to hold both her hands.  Instead he held one hand and walked beside her.  That was such a wonderful sight to see.  That made us both teary.

The good byes to the Nurses was sad but exciting as we knew we were going home.  The first lag of our journey landed us in Hong Kong.  It will never leave my mind how big that Airport is.  I keep thinking of it as a huge city.  We were there for about 5 hours.  We wandered the Airport and looked in the very expensive shops, dreaming.  We actually bought a few trinkets there as they were fairly inexpensive in one of the smaller shops.  We had lunch and yes we had Sandwiches.  They tasted so good.  We then were met by an employee of Cathay Pacific who took us to our departure gate.  We were led back to that Subway train that took us there.  Wow!
 Our seats this time weren't quite as nice although we never complained.  The food was good and Rylan even ate some of it.  He does like his potatoes and veggies.  Rylan then slept most of the rest of the flight Thank Goodness.  Alicia and I watched movies and chatted and tried to sleep but I think we were too happy to be going home.

Rob and Ryan met us at the Airport in Vancouver.  It was wonderful seeing them.  We were a bit amazed at how fast we got through customs.  No problems at all.  The only thing that happened is when we found our luggage on of my suitcases was open.  Nothing of value was missing.  But a couple of the things I had bought for people had fallen out of the suitcase.  

Getting to the ferry was a happy time.  I realized that the ferry was taking us home to the rest of the family and our friends.  

Since we have gotten home Rylan is talking even more.  He is using more words and more sentences.  He is saying things like "Daddy where are you?"  "Mommy I love you!  Where are you?'  When Auntie Ang took him to school on Monday she was standing holding his hand and he let GO!  He stood there for about 5 seconds and then he reached up and grabbed her hand again.  We were all so excited.

I know the question everyone is wondering about and some are asking and the answer is We don't know if he is seeing more or not.  We aren't positive so we can't say a resounding yes.  What we can say is when Alicia holds a flashlight in front of his eyes we think he is following it.  But with that we won't say for 100%.  He has pushed it away as well as if it is bothering him.  We need to remember that even if he is seeing more his brain still is processing it.  So only time will tell.  He will see his Opthomologist in April which will give the stem cells time to work on his optic nerves.

I will keep updating everyone of the changes that are going on.  Thank you for caring and thank you to everyone who helped make our journey a reality.

Monday, October 8, 2012

Today Rylan had his second Lumbar Puncture.  He did really well considering he has a cold.  He woke up from the anesthetic and he was not feeling very well at first.  We couldn't figure out if he was in pain, had a headache or had a belly full of gas.  The nurses and Doctor came right away and tried to access the situation.  He eventually settled and had a nap.  When he woke up he was his usual self.  We gave him some water and he kept it down fine then we gave him some fruit and a pudding and he kept that down as well.  Rylan has 2 more procedures this week.  His eye injections and his last lumbar puncture.  Also they are going to see if they can get that MRI that they have not had much success with.  Hopefully 3rd time lucky.  We have had a couple of days where we fitted in some fun things.  We went to the gift market to look for a few trinkets to bring home.  We took a cab there no problem and were amazed to see a huge building with about 7 floors of every kind of souvenirs you could think of.  The weird thing was none of them said China or Guangzhou.  I find this very strange.  There wasn't a T-shirt or anything.  We did manage to find a few things that we thought people would like.  The other thing we found amazing is that some things were more expensive than at home.  I'm not sure how the Chinese people afford most things. On the way home we got a cab and showed the driver our address.  Settled on a price and set off.  About 40 minutes into the ride we realized he wasnt sure where he was going.  He then looked at me and gestured which way.  Oh dear!  Suddenly Alicia say a building that we see from our balcony and we pointed that way...I then phoned our Interpreter and she helped.  He then started asking people on the side of the road.  Alicia and I were thinking at this point he might just drop us off on the side of the road somewhere, but he didn't and eventually we ended up at the hospital thank goodness.  We decided we had been on a great adventure but from now on we weren't taking cabs.  We would pay a little extra and get a driver.  MUCH SAFER!    Sunday we went to the Zoo.  I am so glad we went.  It was amazing!  It is the biggest Zoo in Asia.  We saw the Pandas that I wanted to see so badly.  We might not have seen the Great Wall but we got to see the Pandas and that made us happy.  We went with 2 other families from here at the hospital.  Such nice people and we have a common bond that makes it easy to be with them.  Its very comfortable, 
Today is Thanksgiving and I think it was the hardest day for us so far.  We are missing the family and yes missing the Turkey too.  I just want to say we are thankful to be here and please continue to send happy loving prayers for our Rylan.  xoxoxo

Tuesday, October 2, 2012

Today was Stem Cell Day. It was going to be done as a Lumbar Puncture and an IV done at the same time. We were both quite nervous about this as one of the complications could be seizures. The others were nausea and fever.   We woke up at 1:45 so we could give Rylan some fruit and a drink as he wasn't allowed to eat after 2:00.  Well that was great but then of course he didn't go back to sleep.  The nurses came in about 8 to make sure he hadn't had anything else and told us that she would probably be back in about an hour for him.  Another nurse came in to give him his daily massage and then about 20 minutes later another nurse came to escort us up to the OR.  When we got up there they  put him on a gurney and Alicia and Rylan went down  a long hallway.  I felt very nervous when I lost sight of them.  Pretty Soon Alicia was back looking very teary.  Its hard watching them putting your child under Anesthetic.
We waited what seemed an eternity but was really only about 20 minutes.  Alicia saw them with the gurney coming down the hall first.  She was very relieved.  Back to our room they brought him to recover.  I am happy to say there were no seizures, nausea or fever.  We are feeling very lucky.  He's still got to lay about another 2 hours but he has so far done really well. He has tried to get up the odd time but lays down when told to.  I hope this next 2 hours doesn't drag.  Tomorrow we are back to Acupuncture and the Eye stimulation so our day will go a little faster.  Thursday is also market day.  We don't need much but I think we will go just to get out.    We Thank everyone for their kind thoughts Prayers and Love.