Brodie's Temple Trip

Brodie was fortunate enough to receive his Endowment almost two weeks ago.

It was a very exciting day. He was over the moon and to be honest so was I.

With Elder and Sister Goddard 

Brodie & I 

With Hai Ji, Bishop Cranston and Callan 

Bishop Cranston

Brodie, Mark and I will be sealed together as a family soon.
Families truly can be together FOREVER!

Happy Birthday Brodie!

Happy Birthday Brodie! 
I am sure you will have a wonderful day!
♥♥♥ love you heaps! ♥♥♥
xoxo

This photo was taken quite a few years ago.
Brodz must have been around 16 yo.

Brodz was going through a phase with longer hair! Smile kiddo!

YSA Mormon Flash Mob in Melbourne

My boy Brodie is in this flash mob in that was done in Melbourne a few weeks ago.
I am so proud of you Brodz! And of course all of the others who participated. There were a few familiar faces in the crowd!

Update on Brodie's Epilepsy

Brodie had his 6 month post-op check yesterday. It's more like 7 (well, it will be next week!)

The Neurologist and the Neuropsychologist are very happy with his progress and the fact that he is still seizure free. In fact it has now been 8 months since Brodie's last seizure!

Unless anything changes with Brodie (ie: he has a seizure) they don't need to see him until August, the 12 month mark!

Brodie's Post Op Follow Up

It's been three months since Brodie had his brain surgery. Today we head into the city to the Austin Hospital to start a three day series of visits as part of his post-op follow up.

Today there's an MRI scan to be done. For the life of me I cannot work out why he has to have it done on a Sunday but that's when he was booked in.

Tomorrow there is a visit with the Neurosurgeon and then the Neurologist. On Tuesday Brodie has a visual perception test done to see if his vision has been affected by the surgery. After that we see the Neuropsychologist.

So far Brodie is still seizure free, which is amazing considering they did tinker with his brain. It's been just over four months since his last seizure and three months since his surgery. Brodie's pretty chuffed about this because it means, provided his vision test is fine, that he will be able to get his learners permit back from Vic Roads. I too am very happy with how things are going in regards to his epilepsy. I am not too sure about him getting his learners permit back though. I don't know if I am ready for him to be back behind the drivers wheel (o_O)

Brodies Surgery - Right Frontal Lobectomy

Brodie had his surgery yesterday.

Poor kid isn't doing  so well. 

Sadly I am on my phone sharing this and cannot see the screen properly. 

I will share more another time. 

Off To The Austin Hospital

I probably wont be posting much at all this week. Brodie and I leave for the Austin Hospital in about an hour. He has his BIG surgery on Thursday. The neurosurgeons will be removing his right frontal lobe.

Brodz has a few scans and tests that need to be completed before Thursday. So we are staying in the city.

As I am only taking my phone with me I may be unable to do any blog posts. In uninstalled Blogger a while back as I was having problems with it.

Wish us luck!

Happy Birthday Brodie!!

My boy Brodie turns 23 today! What a great age that is!
I hope you have a wonderful day today Brodz. 

Love you heaps!!

xoxo
♥♥♥

I want cuddles stop ignoring me Brodie, said Issy,

Brodie with his favourite Auntie a couple of years ago.

We Met Brodies Neurosurgeon

On Monday Brodie and I drove to the Austin Hospital. We got to meet the neuro team that will be working with Brodz. I was secretly hoping that the neurosurgeon would look like Derek Shepherd from Greys Anatomy but nope he didn't. He was however a very nice man to talk with. His colleague Dr. Miller spent more time with us going over the surgery in detail and the possible outcomes both good and bad.

We have a tentative date for the surgery, August 4th. It's tentative because there are a few things that need to be checked out first like seeing the Brodie is healthy enough for the surgery to start with. The doctors stated that if an emergency occurs he will be bumped to another day, which I fully expected to hear. That's a normal thing to be told that. Brodz will also need to have pre-admission tests done before then. He will need another MRI, a visual perception test, blood tests of course and an ultrasound of his heart. They need a baseline for comparison after surgery.

The operation itself should take approximately 4 - 5 hours to complete. Brodie is expected to feel pretty ordinary afterwards and have a headache. That was a given in my book. It's expected that he will spend at least 5 days in hospital afterwards. Brodie isn't allowed to be completely on his own for 6 - 8 weeks after the surgery. He will need someone at home they just don't need to be in the same room as he is.

Now we just wait for the hospital to contact us with times and dates for the pre-admission stuff.

Saturday In The Park

I love seeing animals in the park when Brodie and I go for our walks. 

These ducks were waddling off in front of us as we headed in to town.

At least the noisy corellas weren't around this time. Just the ducks.

It's a good thing we went for a walk on the weekend because the weather hasn't really been the best for being outdoors. It's the kind of weather when you just want to stay inside and read or crochet.

Update: Brodie's Epilepsy Study Results

BRODIE IS HOME!

After 12 days in hospital for this epilepsy study I have my boys back home! I was able to pick them up on Friday afternoon. Angus was also with him from Thursday morning.

We now know exactly where Brodie's epilepsy comes from. In regards to where it starts in the brain. It's in his right temporal lobe (that's the blue part in the picture).

When Brodie has a temporal lobe seizure that is the only part of the brain that is affected. When he has a tonic clonic it jumps from right temporal lobe to the left and it causes the whole body seizure that we initially saw when he was first diagnosed with epilepsy.

Now that the doctors know this. Brodie was told he is a viable candidate for surgery. This is where things get a little complicated. There is a 60% chance that this will completely get rid of the epilepsy but there is a 40% chance that it will decrease the frequency.

Brodie was sent an email with details about what the surgery involves and the risks that accompany it. There is a 1-2% chance of infection or stroke. If a stroke occurs it will affect the left side of his body and may end up being permanent. There is also a 3% chance that his vision may be impaired. If it is there is a chance that it will be significant enough for him to never be able to drive a car, which is something he is desperate to learn to do. Brodie will still need to be on epilepsy medication, something he would gladly stop if he was allowed to, and he will still need to be on it for the rest of his life. He will also not allowed to be on his own for 6 to 8 weeks after surgery. Something I am sure he will not like. He complains now when I wont let him go for a walk on his own.

One thing we definitely know that will affect Brodie and it's the fact that the temporal lobe handles facial recognition and recall of names. He may struggle a great deal with this afterwards. That being said, we joked, that it may be like making new friends all over again. However, I can see it causing lots of frustration down the road even if he doesn't think it will right now.

Brodie will have the opportunity to talk with a patient who has had this exact surgery if he chooses to. I would strongly encourage this. He needs to know exactly what it involves and how it may affect his future. It's a big deal to have surgery let alone surgery on your brain.

For now we will all think about it, discuss it as a family, write down any questions we have, pray about it and talk to our Bishop about it.

Brodie has an appointment to see his neurologist in three weeks time. Hopefully by then we will have made an informed decision. I know ultimately it is up to Brodie. I can only help him work out the pros and cons. He's the one who lives with his epilepsy. Only he can decide.

An Update on Brodie's Epilepsy Study

Poor Brodie, he's been in hospital now for 9 days now and they still haven't been able to get all the information they want about his epilepsy.

He is so distressed most afternoons and is desperate to come home. In fact, sadly enough, he has wished he was dead. Of course when he told me that I phoned the hospital within a few minutes and spoke to someone on the nursing staff on his ward and told them exactly how he was feeling. They needed to know so that they could encourage him, soothe his nerves or whatever else they needed to do to help him.

I'm not too sure how they helped but Brodie has not said anything like that again & that was Saturday afternoon. The staff did unhook him from all the wires for a while and let him have a shower, something he hasn't been allowed to do since Monday morning before he was admitted. I know he felt a lot better after that.

He has all these wired glued to his scalp so that his brain waves can be recorded. He is on 24/7 video monitoring. When he has a seizure there is a box, you might be able to see it on the cupboard behind him with a black button, that needs to be pressed and that time stamps the video. There is also a yellow button on the wall, you can just see it behind all of those wires, it kind of looks like a light switch. You hit that button when a seizure starts as well. It alerts the nurses and within 5 second 4-5 staff members come running in to the room. 

This button is what's called a ceretec button. It's actually the name of the injection that will be given to Brodie BUT only if the seizure occurs during office hours. The reason it can only be done then is it's needed for a SPECT scan. Now the scan can only be done during 'office hours' as there is no staff available before 9 am or after 5 pm. 

The sad thing is Brodies seizures seem to occur any time from 1 am to 6 am. Far too early. The ceretec injection lasts only for 3 hours. You can see the problem now can't you? I am finding it very frustrating that there is no technician on call. You would think that with something as important as this, when you know that seizures are completely random, that there would be someone who can be called in to perform the scan. Seriously I can see how Brodie is as upset as he is.

Poor Brodie has 5 more days before he can come home. I know this may sound horrid, sad, shocking BUT I have been praying for Brodie to have a seizure during office hours. At least up until 4 pm because if it's too late they wont do the scan either AND they wont give the injections on the weekend because there is NO staff to run the scan.  

I feel like I am rambling on here. Brodie wanted this study done. Both Mark and I believed that he didn't need to do it but he insisted. I just hope that the doctors gather enough information. This is all in the hopes that surgery may be an option down the road.

I have to admit though, that we now know two parts of his brain is affected by the seizures. To be honest I cannot remember which ones but I believe that explains why he has two forms of epilepsy. Tonic clonic and temporal lobe. The doctors are not sure exactly where they start from or if one part starts and it jumps to another part of the brain and fires it up.

I just hope that all of this stress and frustration gives the results and information that is needed. My poor boy just wants to be home and I don't blame him!

Epilepsy Video Monitoring

Brodie went in to hospital on Sunday night. Well, to the Medi-hotel on Sunday and he was admitted yesterday for his two week video monitoring study.

They have lowered his epilepsy medication doses in the hopes that he will have seizures and they can inject him with a radio active dye to see which part of the brain the seizures are coming from. The poor thing has had two seizures today. One in the early hours of the morning and the other one this afternoon.

Brodie is very scared about having the seizures. To be honest I don't blame him. I would be concerned as well. That being said I know he is in the best place right now. The nurses will look after him and I am sure the neurologist will visit him again on the ward very soon.

I'll be joining him tomorrow for a couple of days. I just hope that I can hold it together when he has a seizure. I'm not all that good when they happen. I tend to cry a because it distresses me so much when I see them. He needs me to be there for him so I had better be strong.

At The Austin

Wednesday was a very long day. Brodie and I woke up at 6 am because Brodie needed to eat breakfast early due to needing to fast from 7 am for his PET scan at 1 pm.
He also had a SPECT scan at 11 am. Trying to find the places he needed to be was like going through a maze. Up and down different levels and around lots of corners. Thankfully we found them okay. Trying to find the way out was another story.

It seemed to take forever before his tests were complete and Brodie could have a snack and a hot drink before we got into the car for the almost 2 hour drive home.

These photos are of the entrance to the Olivia Newton John Health and Wellness Centre at the Austin Hospital. It looks very lovely and peaceful. It looked even prettier at night when Brodie and I walked past it to go to his MRI scan.

We stayed at the Medi-Hotel which is just a minutes walk from this pretty little area. It's on the other side of that concrete wall in the second photo and downs some steps.

I am just so glad that we are home and that is one thing I can cross of my busy (and stressful) 'to do list'. Now all I need to do is survive the next 16 days and I'll be fine!

Hi Ho Hi Ho It's Off To Hospital We Go

Don't panic it's not a bad thing. Well, it sort of is but it isn't. Ah that doesn't make sense does it? Let me explain ... Brodie has to have three scans done before he is admitted to hospital next week for a video monitoring study of his Epilepsy.

He's having an MRI, a SPECT scan and a PET scan. I'm not exactly sure what the last two are but they are all being done to check his brain. I guess they want a before and after look at his brain after the video monitoring is complete.

Next week when Brodie is admitted to hospital for the video monitoring they will be taking him off his epilepsy medication in the hopes of bringing on his seizures. He needs to have a support person with him 24/7. The support person will need to call the nurse if/when Brodie has a seizure and the nurse will inject him with a dye which will show which area of the brain is affected by his seizures.

This is all being done in the hope that surgery is an option in the future especially if the medication doesn't work as well as it should. Brodie is very keen to be rid of these seizures and wants the operation if he can. In his words "I want my life back!" plus he wants to be able to continue to learn to drive. Something he is not allowed to do because his seizures aren't controlled.

Sadly I am unable to be with him the whole time. Luckily we have volunteers and paid helpers (we need so use some of his DHS disability funding to help us out with that) but we only have the roster filled for the first week *sigh* I don't know what we will be doing for the second week. It's stressing me out big time.

So tonight, Brodz and I will drive the two hours from home to reach the hospital. He has his MRI around 6:45 pm. We shall be staying at the medi-hotel overnight then he has the remaining two scans tomorrow; one at 11 am and the other at 1 pm. Poor thing has to fast for 6 hours for the second scan. He's not very good at fasting. He will need to have breakfast early or he will miss out altogether.

Seriously though. As I mentioned all of this stuff is stressing me out. The neurologist has no idea how much stress he has caused our family with this video monitoring. It's so difficult to do this when you don't have family living in this state. My family, who I know would help out, live 800 kms away. I can't expect them to come over and stay with Brodie at the hospital when I can't. I feel like such a bad Mum being unable to stay with him the whole time but I am Mark's carer and I have to take Angus to an ENT specialist during the first week of Brodie's hospital stay. I need to be home for them as well.

I just want April to be over.

I Love My Town

Yesterday Brodie and I went for a 3 km (1.8 miles) walk around town. Part of it was through Civic Park. It looked beautiful and I had to take photos of the pond and waterfall.

We are so blessed to live where we do.

Even MORE Flowers

I just love Spring time! I get to see ALL of these pretty flowers while out walking.

These are ones I spotted with Brodie.
I just wish I knew what type of flowers they are.

Happy Birthday Brodie!

Happy Birthday Brodie!

I hope you have the best day!!

Enjoy your requested dinner tonight. Roast meat & veg with pumpkin pie for dessert!

Yum. Good choice!!

Love you heaps kiddo! 

xoxo

Sleep Deprived EEG

I've actually scheduled this post as I wont be home for most of the morning. I am taking Brodie into the Austin Hospital for a Sleep Deprived EEG. He wasn't too happy about having to stay awake all night. This kid really enjoys sleeping in nowadays. Something he was unable to do for such a long time. At least he has a friend who will be joining us and helping him stay awake.

Anyway, we have to leave before 7 am to hopefully get there for 8:30 am. The perks of living in the country. Just as well it's only meant to be about 1 hour and 20 minutes away. Although I have no idea what the traffic will be like. Thankfully we are going on Eastlink. Perhaps that might make things easier for us. It's a toll road so some research is required on how to pay and the cost. Since it's for Brodie he can pay (yep I am that mean) and he can pay for the parking too (yep still a mean Mum).

Let's hope that this EEG will show the neurologist what is going on in that complicated brain of Brodies. It would be nice to know why he keeps getting these facial spasms. The Neurologist said that it might be Temporal Lobe Epilepsy. It will be nice to know if that is what it actually is. Poor Brodz suffers a lot when he has them. 

Wish us luck with the test and the travel. Oh and finding parking!

My Chefs

The boys and Mark have been taking turns cooking dinner since I had my operation last week.

I have supervised when the boys cooked and the boys have done a great job.

Brodz cooked tortellini carbonara

Angus cooked rissoles and veggies. He also cooked lamb chops and veggies last night. YUM!!