Monday, April 16, 2012

So many exciting things to talk about in this blog.  We have made our first deposit for Rylan's Stem Cells  and today I went and put a deposit for our flight.  We leave on September 23rd at 3:00 in the afternoon and arrive in Guangzhou 16 hours later.  We have one stopover in Hong Kong.  If this had been for pleasure it would have been fun to do some sightseeing.  Oh well another time.  We are flying Cathay Pacific and so far they have been very accommodating.  They will have a wheelchair to help Rylan on and off the plane and he will have an escort thru the terminals as we will need all the help we can get as Rylan won't be able to walk and his stroller will have to be checked with the luggage.  Cathay has also said they can accommodate his food as it has to be pureed.  We can bring oatmeal for him so that's ok. We will get to sit in seats that have more leg room and that are close to the bathrooms.  So far so good.   Hopefully they will come thru with all that they have promised.  We will be picked up at the Guangzhou airport by an Interpreter and be escorted to the hospital.  The next morning Rylan will be assessed by a group of Doctors and Therapists.  After receiving his Stem Cells we return to Canada on the 14th of October.  I think we will celebrate Thanksgiving on that day as we as a famly have much to be Thankful for.    Hopefully we will be even more Thankful when we get back and those Stem Cells have started working their magic.  
On a different note Rylan has started his new Medication for his Seizures and he has started to talk lots more.  He hasn't had any more seizures that we know of.  So once more I say Thank You for all the support that everyone keeps giving.  Please keep Rylan in your prayers.

Monday, April 2, 2012

One more Diagnosis

Friday Ryan and Alicia took Rylan to Children's Hospital because lately he had been having seizures. It was very nerve wracking for them.  Rylan had to have EEG and it wasn't fun for any of them.  When the Doctor connected the electrodes to his head he became quite upset and quite agitated.  Ryan and Alicia tried to keep him calm but he cried for about and hour and a half.  When it was all done they had an appointment with the Neurologist.  She told them what I had suspected that Rylan had developed Epilepsy. While he had been attached to the EEG she had gotten so much good information.  The strange thing was that it was the left side of his brain that was misfiring and when he had, had the strokes when he was born it had affected the right side.  The little bit of vision he has is also on his left side.  She found this quite interesting.  The exciting thing was when she was doing his physical exam she was shining the light in his left eye and he was trying really hard to see what she was doing and he was following the light with his left eye. 
After they had seen the Neurologist they went to see Rylan's Endocrinologist Dr. Chanoine who came in on his day off especially to see Rylan.  He changed up some of Rylans Meds and told Alicia and Ryan what a good job they were doing. Dr. Chanoine always makes them feel good as juggling Rylans Medication is a bit complex. Then it was back to see the Neurologist to be told that they would have to start Rylan on anti-seizure medication., but with the medication Rylan would be able to concentrate better and it would help him learn.  It would help his lashing out and mood swings.  When they got back home they came for dinner and we talked about this new diagnosis. What it would mean to Rylan and to them.  To my surprise they told us it was just one more diagnosis and they would deal with this as well.  I am not sure how well I could walk a mile in their shoes.  It would be exhausting to have to live with the stress but I guess as they quite often say, It is their life and they have to live it the best they can .

Now for some good and exciting news.  We have been accepted to go to China to the city of Guangzhou on September 24th, 2012.  We will return home on October 14th.  Rylan will get at least 8 packets of Stem Cells.  While we are there he will receive Physiotherapy, Occupational Therapy, Fire cupping and either acupuncture or acupressure.  He will be in some sort of Therapy 5 to 6 hours a day and receive stem cells 2 times the first week and three times the 2nd and 3rd weeks.  We are hoping that we can still raise a little more money as the more we raise the more packets of Stem Cells Rylan can receive. 
We the Johnstone family want to thank everyone who has donated money, the ladies who continually give  so much of their time and energy.  The people who sent their prayers and Love and believed in our cause.  We have a dream and you are helping us realize it.