Riley Update

Very Tired with Daddy, before MRI

On the 2nd of February, Riley had his MRI,

we were admitted to Flinders Medical Centre in the morning and had a few hours wait until he was taken down for the procedure, I sat with him while they gave him the gas.

I tell you, that was the single most horrible experience of my life,

and leaving him lying there was even worse!

I was not allowed to be there when he woke up, which apparently is common,

but I thought it was ridiculous,

especially when they brought him back screaming and terrified because he didnt know anybody around him.

 I really think they should change the way they do things and allow parents into recovery.

Like he had not been through enough without the fear of being without his mummy!

Looking spunky in his gown.

He was very thirsty when he woke up and drank 2 full bottles of apple juice in about 10 minutes. He was very hungry aswell, as he had been fasting since 6am and he didnt come out of recovery until 2pm.

 He was happy to eat the biscuits the nurse gave him, then ate the snacks I had taken along aswell.

Big Smiles!

We were able to leave the hospital at about 4pm, and it took us over an hour to get home. Riley was very tired when we got home and Zane was pleased to see us after spending the day with his Nan.

Zane playing at Nan's house.

We get results on the 30th of March and I will post them as soon as I get a free moment.

Happy 8th Birthday Emily!

Emily's Birthday signals the end of our crazy 2 months!

She had a wonderful birthday and I was brave enough to let her have a sleepover with her friends from netball (9 girls!)

Our Crazy Sleepover.

She was very spoilt and we let her choose her own new bike, she got a helmet from Nanna Evonne and lots of other wonderful gifts!

She has almost worn a patch in the front yard from riding in circles!

Not much sleeping was done.

Christmas Time!

Riding the train at David Jones.

Yes, I realise that it's nearly the end of March, but the Silly Season is over and life has finally gone back to normal!

I tried to do as many Christmas activities with the kids as I could.

Which is not easy when the boys love to run!

We went to the Magic Cave with Mum and Nanna, the kids rode on Nipper and Nimble, and enjoyed looking at the displays and silly mirrors.

We skipped seeing Father Christmas at the Magic Cave and wandered down to David Jones, where there was less of a line up.

We visited him there, and then the kids went on a lovely little train ride. Zane found an extra ticket on the floor and got to have a second turn! There was also a small coin operated train, which the boys loved, we were there for a very long time, and both Zane and Riley were reluctant to leave!

With My Nanna at the Magic Cave.

We had a wonderful Christmas, with the boys understanding a lot more than they did last year! Everybody got spoilt as usual! The boys got Toddler Beds and a Roller Coaster ride on toy from Father Christmas and Emily got everything a little girl could ever want and more!

We spent time with my Dad on Christmas Eve, and he gave the kids a joint gift of an enclosed Trampoline! Hours of fun has been had by them (and John) already!

We spent Christmas day with my side of the family and had a wonderful lunch at Mum's house, The kids enjoyed seeing their cousins and got spoilt all over again!

Our new Toddler Beds

Boxing Day was speant with John's family at the park, and we all had a great time! It was tricky keeping the boys from running away, as there is a main road and a creek near the park, so we had to keep a very close eye on them, they only made us panic a few times, but we found them sitting in a little tent and behind deck chairs! They knew exactly where they were!!!!

I always enjoy Christmas, but was glad it was over this year and we could finally get back to our routine and our normal life!

Happy Birthday Zane and Riley!

Another full on weekend.

Most importantly we celebrated Zane and Riley's 2nd birthday! We had a larger than expected party at home on Saturday, with most of our family and friends in attendance. The boys had a great time, and are getting very good at unwrapping presents! There were a lot of things I had in mind to do for the party that didnt eventuate, only due to lack of planing on my behalf. Lets hope next year I can attempt to be super organized. (one of my resolutions)

Riley blowing out his candles.

They got spoilt as usual and there are still a stack of gifts on my dining table, it may seem like so much because there are two of them, but it's still a bit overwhelming... Where am I going to put it all? We have not even gotten through Christmas and Emily's birthday yet and I am already swamped in toys!

Joint present unwrapping.

Zane was very impressed with the singing.

Before the party on Saturday we had Emily's last game of netball for the year. All of my girls were superstars as usual, and we had a fantastic end to the season by winning the last game by 3 goals! All the girls recieved medals and were very pleased with themselves. (almost as pleased as I was I think!)

Pines Cruisers U/10

Emily with her medal.

Saturday afternoon we had Liana's 8th Birthday sleepover party. Emily and I did not end up getting there until about an hour after it started, and all the girls were in full ratbag mode by the time we arrived! I stayed until midnight to help Nikki, and was back at her place by 9am the next day! She did a great job at hosting the party and I think the kids had a great time!

The girls at Liana's Birthday Party.

Taking It All In...

I have not blogged for a while... Things with Riley have gotten better, but worse...

I guess I have just been trying to take it all in and make sense of all the medical jargon being thrown at me...

When we were in hospital the doctors seemed reluctant to use the word Epilepsy, which made me feel better, but at the same time frustrated because there was still no reason for his seizures.
We went to see a paediatric neurologist a few weeks ago, and after examining Riley for not even 10 minutes he concluded that it was indeed Epilepsy and that he would need to take an anti-convulsion medication for 2 years. He prescribed a liquid medication called Epilim, which we have to slowly ween Riley onto by 1ml a week, until he has reached 4mls twice a day. When he has been on 4mls for a week, he needs to have (another) blood test to check his liver function, as Epilim can effect that.
It can also make him drowsy, although we have not seen any of that yet, but he is only on 2mls twice a day at this stage. I was very worried about this because I did not want him falling behind. 2 years is a lot of learning time for a two year old. By the time he stops taking his medication, he will almost be in Kindy. My worries seem unwarranted at the moment though and if I notice any changes I will speak to the doctor and we will try a different medication.
The poor little boy is on 2 different medications now, Epilim and Ferrous Sulphate, which is helping with his Iron definciancy. He is so good though and most days he takes them both without complaining. Zane is feeling left out though, whenever I give Riley his medications, Zane asks for 'some'. Very cute, but after 2 weeks of saying ' No, this is for Riley'. (When I start preparing Riley's medicine,) Zane says 'Riley's'. He learns so fast!
I have finally sent Riley back to Child Care after about 8 weeks of him not going. I did it more for him than me, I would have been happy to have him home with me all the time, but Zane was learning lots of new things and it was noticable that Riley was missing out. Zane is doing a beautiful job of feeding himself with a spoon, and his speach has come along a great deal since he started Child Care. Even though Riley does feed himself and use a lot of words, it just seemed that Zane was advancing a bit quicker. So off Riley goes, back to child care, although this time around he does not cry when I leave and seems to enjoy it a lot more than he did the first time around.
In the new year they will be going into the 'Toddler Room' and I am hoping that teaches them even more than they currently learn in the 'Baby Room' because they are some of the oldest children in there at the moment.

John has been working in Fruit and Veg for the past 2 weeks and it's so much easier on me and the kids, we have gotten ourselves into a good routine, and they get to spend the afternoons with Daddy, which gives me a bit of time on my own (which I have been spending very productivly at the gym!) I am afraid though that his time in Fruit and Veg won't last, as the company he works for seems to be trying to make his life as hard as possible... With any luck he will be there for another week, so we can enjoy our newfound routine... Fingers crossed it becomes permanent though!

As we approach Christmas and the New Year, my life becomes bedlam. Zane and Riley's Birthday's are on the 12th of December, and Emily's is on the 19th of January. This year though, in between all the usual parties and get togethers, will be doctors appointments to top it off! I can't wait until March, when it is all over and we can get back to normal life!

Riley having his EEG.

Keeping him distracted was tricky.

Riley's Story

Well, what a weekend!

Riley's health issues seem to come to a head on Thursday, with him having his second seizure.
I was giving the boys a shower after breakfast, when their shower was over I wrapped them both in towels and Zane asked to be picked up. I picked him up, but then Riley got upset, because as far as he is concerned, I am his mummy...
He started having a tantrum outside the bathroom floor. I am an ignorer of tantrums, so I walked away to dress Zane. After about 3-4 minutes I had finished dressing Zane and went in to get Riley, who seemed to have finished having his tantrum.
Zane was following me and as I rounded the corner to the bathroom door, I realised that something was seriously wrong, Riley was laying on his back and appeared to be sleeping.
I crouched down and called his name (Zane did the same thing, kneeling down by his head and calling 'Ryah'.) Riley responded, but only slightly, opening his eyes and rolling them around.
I picked him up and he was very limp, I rested his head on my shoulder, wrapped him in a towel and called my mum, who told me to call an ambulance ( something I should have done immediately, but could only think of calling mum.)
Once I had called the ambulance I called John, who hung up without asking any questions (including which hospital we should go to.)
The ambulance arrived and took us to Lyell McEwin Hospital.
We went there for his last seizure and were told that next time he had a seizure, they would do further tests.
On arriving t Lyell McEwin for that second time, we were told exactly the same thing, even though we pointed out that this was his second seizure. They seemed unwilling to spend any time doing tests on him.
Consequently John and I decided to discharged him and drove him to the Women's and Children's Hospital, where we were booked in for an EEG (Electroencephalogram.) given a blood test and a number to call for a semi private Paediatrician almost immediately.
We went home satisfied with the results and vowed that if it ever happened again we would go straight to Women's and Children's.

There were 6 weeks between Riley's first and second seizures, so we thought things would be calm for a while.
But no such luck....
On the Friday after his second seizure Riley and Zane were sitting in their highchairs eating breakfast. Emily was sitting across from them on the couch. John and I were having a coffee when we heard Emily call out 'Mum, Riley is doing something funny' we rushed in and found him hunched in his highchair having what is know as a Tonic Clonic Seizure.
I tried to get him out of his highchair while John called an ambulance. During a seizure Riley is very stiff and shaking all over, which made it very hard to get him out. When I had him out I placed him into the recovery position and spoke gently to him until he stopped shaking.
I picked him up and called his name, he responded the same as he had the previous day, with rolling eyes and a limp body. Again the ambulance arrived ( after a short pit stop at number 32 (we are number 39) John was flustered during the phone call.)
Riley and John went in the ambulance straight to the Women's and Children's Hospital and I waited for my mother-in-law to come and look after Emily and Zane. I followed shortly after. Arriving at the hospital Riley was a bit distressed, but calmed when he saw me.
He had more blood taken and a mucus test before being taken admitted and taken to a ward for observation. He slept for a few hours.
Then we went down for him to have an EEG ( results come back tomorrow.)
We stayed overnight and saw the doctor the following morning. We found out that he has Rhino virus, which seems just to be a name for a cold, but with an associated infection and slight gastro (which we knew.)
The doctor seemed to think the seizures were caused by the infection. But we will wait to find out the results of the EEG. If the results are clear, it's basically a waiting game but if they come back that there is something unusual Riley will have an MRI, which involves General Anaesthetic.
He has been very sooky and a big Mummy's Boy since we came home from the hospital, but that's to be expected I guess.