Ollie’s Spastic Quadriplegia Blog

Hello to all. We have finally made it home. What a mission. Ollie was a complete ratbag from japan to brisbane poor baby and poor mummy too. it was a tough twenty four hours. He was so happy to get home to his daddy  sister and pa and even though he was so tired he still managed to have a run and laugh in tigga!

I was taken out the next night after  we arrived home for a great big juicy steak what a treat. Comfy bed and lovely family has already made the tough journey fade away. Ollie slept through the night and the next day for four hours he really is loving his bed he did not even move one inch the little spunk.

We have noticed a few improvements which make everything worth doing ten times over.

 Firstly he is opening his hands most of the time and using them although not so successfully yet but a lot more controlled than in the past. He is grabbing at things all the time.

He seems to be hardly ever dribbling. His mouth is closed a lot more.

He is more relaxed and cries less.

His eating has improved so much. He seems to be swallowing easily, I can hear himswallow. He usually pushes most of the food out of his mouth now he sucks it back and pushes none out. He still needs to learn to control his muscles in his mouth however I see a lot of promise whereas before I saw none. I am eager for his speech therapist to give advise on his mouth muscles and see what she thinks. Hopefully he may improve enough now to talk. Please!

I am so happy and really hope bigger and better things happen for the little tacker. The doctors in China told me the stem cells take a long time to grow so we have to be patient. Each new thing which Ollie achieves is like Chrismas wishes to us Over and Over.

Anyone thinking about taking the leap of faith in China I say you have to make it happen!

I love stem cells!

Well its time to leave the house Ollie and Natalie.  Feels like my real life is a fantasy which is about to come true again. We had a great night last night they threw a party for us and we even had santa visit us. Ollie is really tired and we have a long trip ahead of us on Christmas Day! Will update more when we get settled at home. I am pushed for time and definitely will not be missing this plane. Merry Christmas to all and thanks so much for all your comments and support. Love each and everyone of you. Nat and Olliexxxxxxx

We have woken up at 4am this morning both over the moon. Yesterday was the final spinal and I must say the easiest of all. Ollie just laid still the whole six hours and even fell asleep for one hour (until the nurse had to check vitals and woke him up) but this is very important. Ollie is so happy and I cannot wait to take him for a walk today in his covered over pram. It snowed yesterday so we will be rugged right up. He has a lot of energy to burn off and cannot wait to get home to his special Tigga tracks and show off to his daddy his brand new fingies! Tonight we will be going to the night markets to hunt for a few Christmas prezzies. I cant wait to go bartering its so much fun! Will take pics and show you when I update next.

The hospital let Ollie go out for a few hours on Sunday finally so we decided to go on the hunt for a big Buddha to rub his belly. We had a great time looking at all the traditional foods and craft etc. Ollie loved the attention although we did have him in his pram covered over with his plastic so i wasn’t offending people by stopping them touching him constantly.

The part of china we are in does not have hardly any tourist therefore we were a great attraction to the people. Once we get home it will be weird not getting any attention anymore!

Their food stalls were interesting I really wanted to try a few things this time but chickened out! I cant afford to be sick being here on my own who would look after Ollie? Ahh being a parent really does make you cautious. Pictured above is their treat food like our take outs. Whole duck heads and whole crabs they eat the lot of it and love it! I really did see some interesting foods!

Stem cells

 and growth hormones

Well todaywas Ollies last spinal transplant.  All went totally smoothly. The little tacker is such a gem. He has gotten used to the whole laying still thing for six hours which I cannot believe. The final 2 treatments he has not even been sedated he just laid still and watched Jungle book again. 

I believe to date there are a couple of improvements that i can mention. His fingers are open more he still has to build up strength in them and learn to use them.  He has scratched his face with his new open fingers!  He loves reaching out however still can only grab things at arms length not close to his chest etc.  His trunk seems to be a little stronger he usually when being held will snuggle into me and only every now and again try and hold himself up or lean out from me but he seems to be trying to do this all the time now and trying to grab everything around him. He turns from side to side trying to see everything.

He also seems a lot more content and easy to be around. He spent  four hours yesterday out and about with me without a word of complaint he never does this. He talks in his little language constantly if i talk to him he will talk back all the time! This could just be because he has my full attention all the time though.  Hopefully he will be good on the twenty 27 hours transit home on Christmas Day!  If not well I know this has all been worth it!

The last few days Ollie has been enjoying the company of three lovely boys. He loves going to the playroom and watching them jump around and they all love making Ollie laugh by doing funny things. Its so great that he has some friends to play with. He even gets tickles kisses head rubs and hugs from the boys so precious to watch. The more funny things they do the more he laughs and that makes the boys so happy.

I must say that we are home sick however we are starting to feel less alone with some nice families arriving and having understanding people to talk to.

I am so excited everyone Ollie definitely has new fingers! Its amazing to watch him discover them. His hands are usually permanently fisted and they pull into his chest whenever he tries to do anything. Now they are open most of the time and when they are fisted they are only softly fisted. I touch them and he opens them strait away. Now we have to get him to use them properly, which hopefully will happen. Its like bambi fumbling to stand up for the first time with his new hands. I have nick named his Mr. Fingies.

 I love stem cells! Now I am just fully stimulating him all day long trying to make things happen.

AHHHHHHHHHH happy happy happy happy!Relieved and smiling.

Hi everyone.  One more over. They took two times again to put in Ollies Dripline.  MostIy due too Ollies spasticity not the nurses fault however I feel so helpless watching them upset my baby so much every single time. Once Ollie was wheeled out of the theatre his beautiful eyes were searching the room full of Chinese People looking anxiously for mummy. Once he found me he gave me the cutest relieved smile that I will never forget. He is so delicious and brave and does not even know it.

His bowel infection has finally seemed to settle this morning. This has been what has caused him so much distress. The spasums wake him up every five min or so causing him to be constantly tired.  He has had a bit of sleep last night after his injection of stem cells yesterday.

I had to have him sedated once we got back to the room because he does not liike lying flat on his back which he has to do for six hours without moving his head.

 He was woken up by a mother who was running around the hall way screaming with her kids -knowing it was treatment day for a lot of people (just not her kid). I discovered her doing this when I opened my door with a look of distress on my face, which she must of taken as anger. A few min later I received a nasty letter under my door.  Can you believe that! I didn’t even say anything. All I can say is I am taking this very seriously the only noise Ollie makes is crying in discomfort!

Anyway today Ollie is happy and in no pain so that is all I care about.

Next treatment is on Friday @1.30pm.

We will do anything for our kids.  Ollie was having a very restless sleep again last night.  Which is often a side effect of the stem cells moving around in the body. 

So I tried everything to settle him down. Nothing seemed to work.  Hi5 usually does the trick however not this time. My nerves were building up after six hours of grizzling so I decided to at least do something to relax myself.  So picture this I put on a Jimmy Barnes concert (Our best Australian singer song writer of all time) and started dancing around the room with Ollie in my arms singing at the top of my voice. He finally stopped crying!  Next thing you know fireworks started going off just outside our window! We are on the 20th floor so I was getting a great view. What a classic moment. Thank you Jimmy!

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.