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. 

Saturday, September 29, 2012

It's Saturday and tomorrow will be one week that we have been here. Sometimes I feel a little homesick but it helps that we can Skype the families.  The days have gone quickly as we are busy taking Rylan to all his appointments.  Today we found out Rylan is to have another MRI to have a better look at his Pituitary Gland.  I guess him fighting sleep didn't help the situation.  When the Doctors came in they confirmed that on October 3rd will be his next Stem Cell day.  Can't wait for that day.  After lunch we took him to his Opthomology appointment and then to his Acupuncture.  Alicia was very brave today and asked how much the needles hurt.  The Doctor offered to let her try one and she was very surprised when it didn't hurt.  The Doctor then showed her a bigger needle and she let him put it in.  She was amazed that it didn't hurt either.  In fact she said after that her arm didn't hurt at all and felt warm and tingly.  We now know that it is fear that Rylan feels when he gets upset not pain.
Alicia and I are starting to feel a bit of cabin fever so the walks in the afternoon really help.  Today we walked around the small lake we spotted from the hospital balcony.  It's beautiful!  There we people flying kites, young couples walking the paths holding hands and taking pictures of each other.  The gardens there are beautiful and plants that we have as houseplants grow outside here.  We saw a temple and another building which we weren't sure what it was that was very impressive.  Many people stared but some said hello and smiled.  Maybe they are getting use to seeing us.  Tonight we are having Pizza and a Corona.  Makes us feel a little like we are closer to home. 

Friday, September 28, 2012

Today is our 5th day in China.  It's hard to believe.  Yesterday Rylan had his UltraSound which went really well. Then after lunch they came to sedate him for his his MRI and EEG.  The little nurse named Amy came into give him the medication and told us it would take about 20 miinutes to kick in.  Well 20 minutes came and went and still no sleeping Rylan.  So 10 minutes later we got him to sort of be sleeping but when they but him on the gurney to take him for his MRI he woke right up.  Off we went anyway thinking that the rocking would put him to sleep. NOPE!!!  He was still awake.  So we stopped outside the MRI room and they called the Doctor who came right away.  They gave him more sedation and he laid there giggling and doing his Rylan Chatter.  As this was going on another family was bringing in there father who looked like he had had a stroke or something.  Then the yelling and the arguing began.  Alicia and I stood there in shock.  They were arguing over who was going to get to go in the MRI first.  Our Doctor saying we were and their Doctor saying they were.  This went on for quite a few minutes until the Radiologist came out and said that they couldn't do Rylan because he was STILL not asleep.  Everyone was amazed.  It was then decided that he would go and have his EEG that the MRI would be done the next day.  So off to EEG where he actually went to sleep.  They hooked him up and turned on the machine which Alicia had seen before at Children's.  They did something a little different they turned on a strobe light to see if they could get Rylan to have a seizure.  Sure enough he did.  That was a little hard to watch but thankfully with him sleeping it didn't last long.  After they removed the cap for the EEG the decided to give the MRI a go again.  We headed back and Alicia started taking off all her jewellery so that she could go into the room with him.  You can't have any metal on when you go into the room. Then they reminded her to take out her nose ring and she stopped and said she couldn't.  I then stepped up and said I would go in.  I have to say that I was very nervous.   For those of you that have had a MRI you know how loud it can be. Just as we went in the room you know who woke up.  I thought"Really!"  But in that he had more sedation than the average little one, he was quite docile.  So off we went.  The Nurse put him on the MRI and loaded him in.  The machine made so many beeping and roaring noises I thought Rylan would be scared to death.  But he actually seemed okay.  After a few minutes I could see that he was having another little seizure and couldn't wait for this to be over.  After all that we got him back to the room and laid him down expecting him to go back to sleep.  No he sat up slipped himself off the bed and began to play.  Unreal!   Alicia fed him dinner and then about 8 he fell asleep.  It was quite a day for a little guy.  Today he woke up early and I got him and put him in my bed where he fell back to sleep.  He is getting his times a little straighter.   We were all up by 6 as we were quited excited about the Stem Cells being delivered around 9.  First Strawberry the nurse came in and put in the IV and Rylan never even made a sound. We were prepared for screaming and crying but it didn't happen.  Then those magically little miracles arrived.  They hooked him up and we watched them drip down the tube and into Rylan.  This is what we had hoped, wished and dreamed about and it was happening.  I kept watching Rylan seeing if there was any adverse effects but here was nothing.  He just asked if it was all done.  Amazing.  Today Rylan has been extra vocal.  It started when we woke  up.  Asking for Grampa and just chattering away, much of it making perfect sense.  Alicia is quite amazed and thrilled about this.  We are curious if the Acupuncture has had something to do with it.  After lunch we went for a walk around the block.  A Chinese block.  It's not your usual block.  It would be more like 6 of our blocks if not more.  We saw lots of statues, apartment blocks a very large school and I think we were a bit of an attraction too.  Alicia's blonde hair gets quite a bit of attention.  LOL!  It's a definite head turner.  The rest of the day was spent at the Opthomology clinic and at Acupuncture.  We then came back had a bit of a rest and then went down to the kitchen and made Spaghetti.  Rylan seemed to really enjoy it.  I know I did.  I hope this gives everyone a little insight as to what are days are like here in China. 

Wednesday, September 26, 2012

China day two and this last 24 hours has been amazingly busy.  We have met the lovely kind nurses, we have met Doctors who specialized in Stem Cells, Opthomology and Acupuncture.  They are all very kind and very thorough.  We started yesterday by meeting the Stem Cell Doctors who wanted to know every detail about our Rylan.  They wanted to understand all his diagnosis and what happened to him at birth and his Adrenal crisis.  In the afternoon we decided to go with some other families by a bus that is provided to us, to the market.  Oh my Gosh!  Now that is a cultural shock.  Take Costco times it by 10 and fill it to the brim with people and you get the market at Guangzhou.  This apparently is a small market.  The food was unbelievable.  There is every kind of exotic Fruit and Vegetable that you can think of.  The meat was a little bit of a shock as well. No part of the animal is wasted.  I think our Interpreter found us a little amusing when he was giving us the tour.  He told us all the different things you could get and I wont go into great detail.  I did find that food is really not that cheap here.  I had been told it was.  We spent 378 yen which is about $60 and really we can away with 2 bags.  We bought bananas, Applepears, kiwis. milk, sugar, \yougart, grapes, and we found the International part of the market where we found some Spaghetti sauce and noodles.  We will cook those for Rylan.  We had to buy ourselves some mugs, glasses and a couple of bowls and a bigger bowl for making pudding and stuff for Rylan.  It was an amazing experience and we enjoyed it all.  \
|This morning Rylan went for Acupuncture.  He was quite taken by the Doctor.  He hugged him and held his hands.  We were in a bit of disbelief as he usually is quite shy about people he doesn't know.  He had this strange wood box with herbs put on his head and then he went into another room where they did his acupuncture.  He will have acupuncture everyday.  Getting a few more acupuncture needle sights each time.  I was expecting him to loose it but he didn't.  He co-operated until another little boy who is here for stem cell treatment, started crying.  He got very upset and had a small seizure.  He was ok though and we talked him through it.  He is such a brave little boy.  He makes me so proud.  I can't think how I would be if I was blind and all these strangers were poking me and doing strange things to me.  This afternoon we went and saw the Opthomologist and she said pretty much the same thing as his Doctor in Canada.  His eyes are perfect.  She is waiting for the MRI that is planned for tomorrow to see how his Optic nerves are.  He then went into another room where they put these glasses on him that act on his Pressure points around his eyes.  He laid there for 20 minutes.  He will go back at least 5 times for that maybe more.
Tomorrow he will go for Ultrasound at 8:30 and an MRI and EEG at 3:30.  He will be sedated for these procedures.  The Doctors are looking at why he has seizures and how big his Optic Nerves are as well as any brain Malformations. 
Friday he starts his Stem Cell treatments.  We are so excited for this.  We have met families who have been here 3 to 4 times.  One family from Australia who have a son who is very delayed.  They have been here 3 other times.  Another family is from Hong Kong and this is their 5th time.  Both families said that they have had great success.  We said that there was no way we could come back that many times.  Wow!  When you think how much this is costing them but I know there is no way to put a dollar sign on your child.  You will do what you have to, to help them.  I know that we would. 
Right now Rylan is bum scootiing around the room investigating everything with his hands.  He will do this for ages, entertaining himself.  We are going to take him to the Common Room to see what toys are there and to make his dinner.  I will try and Blog again tomorrow. 
Ill sign off by saying what Rylan says...Bye, Love ya, See you tomorrow...

Monday, September 24, 2012

Good Morning.  It is our first morning in China and to say that the last 48 hours has been uneventful would be a big lie.  We left Gibsons on Sunday on the 8:30 ferry.  Stopped had breakfast at White Spot and then off to the Airport. The parting was mixed with excitement and yes anxiety.  I know Ryan and Rob are going to find it hard without us.  We are going to miss them but we are going to be very busy with Rylan.  The plane ride was good from Vancouver to Hong Kong and the employees of Cathay Pacific were outstanding.  But man every time you turned around they were feeding you.  So many meals and snacks.  Rylan wasn't too keen on his meals but its ok as we had brought lots of fruit and they did supply him with yogurt.  The plane from Hong Kong to Guangzhou wasn't as great.  It was an older jet and there was Lightening and lots of rain.  Rylan was now tired and hot and didn't want to participate anymore and let us know.  He was quite loud and cried. Poor little guy probably thought were never getting to China, I know Alicia and I didn't.  We were so thrilled to see Peter our escort at the Airport.  We gathered up all our suitcases, carry ons, computers, purses and backpacks and it was quite a scene.  I can't believe we brought so much stuff but we need it.   When we got to the hospital after a one hour drive we were shown our rooms.  Well its not the Hilton but in saying that it is clean with 3 single beds a bathroom and a fridge.  There is a TV and a DVD player and we get 2 English channels.  Its not so bad at all.  The Beds aren't bad and we have a small deck off the room. We unpacked and by then it was about 36 hours since we had started our journey.  Off to bed which Rylan is not too pleased about because to him it's daytime.  But with a little cajoling and Grandma being very firm and then taking him to bed with her he fell asleep.  Today we will look around and find the kitchen and the common room.  I am going to try and Blog everyday.  Talk to you soon.