Ollie’s Spastic Quadriplegia Blog

Our room

Sorry for everyone waiting for me to update.

Firstly I have to tell you all that I am pretty sure Ollie has had a little bit of muscle tone improvement in his hands!! they do not seem as tight already!  However I am not sure if this is due to him being so weak from being sick.

 Ollie is ok he has had an infection in his stomach nothing serious but it has kept him awake for three days and two nights strait. It is a common infection sort of like gastro. We have both run out of clothes from the vomiting and the other end too. Poor Ollie. He has a bad pain tolerance as it is.

I have an adopted aunt and uncle here two doors away they are from Melbourne. They have given me lots of support and intend to do so for the rest of our stay. Thank goodness for Aussies!!

It has been a very hard few days and I have wanted to come home, however today is a brand new day Ollie is bright eyed and happy. I have just snapped myself out of it and I am pretending I am an assassin of bad things. 

Tomorrow is his next Lumbar Puncture at 2.30pm again so fingers crossed.

Thankyou to all for your comments they have been what makes me the strong assassin!!!! Love you all so much.

Ollie after Lumbar Puncture still sleepy

Today Wednesday Ollie had his first Lumbar Puncture. This is done by inserting the stem cells into the spine. This was a very nerve racking experience and I know it is the first of four, but this is what we are here for. He was very brave however he did have to be sedated after he came out of the  because anaesthetic he was either in pain or a side effect is bad head ache or nausea. They do not administer pain medication in china unless you insist.

I am so thankful that he has been sedated because I definitely would have had to lay ontop of Ollie to keep him still for the six hours they require him to be flat and still for. He has been asleep now for four hours stirring only mildly.  Hopefully he will not wake up for the last two hours.

I have had a few angry moments today thinking about the stupid hospital that has caused Ollies condition. He should not have to go through any of this however we have to try and improve his quality of life.  The next two days are full of therapy. The stem cells need Sleep Stimulation and Food so thats what we will be doing.

Getting the first Stemmies

Liquid Gold for Ollie

The first lot of stem cells were administered on Monday through IV drip.    This process is very strait forward the hardest part was putting in the drip needle which had to be done twice. Both times he was laughing his head off! Tracy a lovely Canadian lady was playing peek a boo with him bless her. Once the stem cells were entering him he settle into a bit of hi5 which everyone knows is his favorite.  He is so strong our Ollie. A very cute little chinese boy was having his first stem cells next to us he was crying also until Hi5 took his fancy too.

That night he was so restless and did not sleep at all. He has had double his food in a 24 hour period starving hungry. This is normal apparently.

He had standing therapy today. Then Radio Wave therapy which he nodded off to sleep for a few mins.

I am not looking forward to the spinal injections. Ollie does not even know what is coming poor boy!

Well Saturday came and went. They dont do anything here over the weekends. Ollie had some tests and thats about it. He didnt even cry when they took blood tough like his daddy! They left a nasty bruise though. Its really hard with no pram they are going to look at it on Monday for me otherwise I will have to buy one at the RTmart which we visited on Saturday. I found a wheelchair and thanks to mums invention I could strap him into that. He was not very comfortable but he was a trooper for mummy. Found a few supplies and felt like a star for the whole time I was out, they loved looking at us and everyone wanted to touch Ollie. He just did his usual huge smile and a few laughs at some of the funny noises and faces they were making.

Today is Sunday and nothing is happening at all today. Ollie misses his special Tigga tracks at home and I intend to help him burn off some energy today help him play etc. We are going to go for a big walk and see if we can make some more people smile!

Tomorrow will begin the start of our huge timetable I just want to pump those stemmies into our boy!
Swim stem cells swim!!!

Well we got here. Was very interesting doing all this just Ollie and me. Really wish Alex was here with us but thanks to Skype it feels like he is here in a way. We had a few hicups along the way. The flight to Japan was quite ok. Ollie managed to fall asleep for about one hour ( out of seven and a half ) I even had the chance to have one last Jim Beam!
Once we arrived in Japan I did not know what to do. Everything was in Japanese and all the other travelers seemed to disperse very quickly so I could not follow the leader. Once I passed through customs (with my vegimite )and found where the bus was for my stopover I realized the bus was leaving! Had to stop him.
Once we were at the motel we jumped strait into bed and felt safe.Ha Ha.
The next morning we traveled to China. Ollie screamed for the whole flight.
We got through customs went to pick up our luggage and found our special stroller was totally squashed and broken. Without the stroller I could not carry the luggage and Ollie. Needless to say I started crying and felt totally out of control. Dad told me if i am in trouble just start crying but it came naturally but he was right, help came quickly!
The lovely man from the hospital was there to pick us up and take us too the hospital. As soon as we arrived the staff came to see us get details about Ollies birth and run through everything with us.

Just being here on the twentieth floor the Stem Cell Center is inspiring. So happy to have this opportunity cant wait till the first injection to happen.

Have met another mother and child who has CP and is here for the second time and intends too come the third time. She has had huge improvements even after the first treatments.

The doctor in charge of Ollies case is lovely and told me that cases like Ollies with lack of oxygen at birth have had the most improvement.
Bring it on!!!!!!!!!!

Ollie was born on his due date. The pregnancy was totally normal no problems until has birth. When laboring started going wrong a lot of mistakes were made by all of the hospital staff nobody seemed to know what they were doing, therefore taking too long to get Ollie out. He was starved of oxygen causing brain damage (Cerebral Palsy). Obviously there is a lot more to the story a lot of heart ache and misery for Ollie and his whole extended family. One day we will tell the whole story.

Today Ollie is one of the cutest little boys you will ever meet. He has the greatest laugh and smile. His disability is obvious. He cannot control any of his muscles including his mouth. He cannot sit reach out open his hands talk or walk. He has very limited control of his legs but no balance to enable this to be helpful.

Mentally he is very cleaver and this is obvious too. He is so frustrated that he cannot play and do things like everyone else. We as parents and grandparents try our hardest to make him happy, inventing different gadgets to help him get around and be comfortable.
As soon as we found out about Stem Cell Treatment we knew we had to try it for our delicious Ollie.

All I can say is Swim Stem Cells Swim find your place grow and please help our Ollie! xxxxxxx