Botox and Laryngospasm

Today we went to Princess Margaret Hospital (PMH) for Cayla’s 6-montly botox injections in her left leg. Cayla had to fast from 7am and we had to be at the hospital at 10am in the morning. We didn’t get home until just after 5pm… such a long draining day. As much as I don’t really like the doctors injecting botox into my child’s body we do know that it really helps with the spasticity in her calf and hamstring. We have seen a big  improvement in her walking the last few years and I have been told many times that the small amount of botox injected in her leg is nothing to worry about. Usually Cayla is doing pretty well with the general anesthetic and the recovery but not today.. Apparently she had something called laryngospasm just after she had gone down for the general anesthetic, but before they had put the IV (drip needle) in her hand. That’s when the vocal cords suddenly seize up, blocking the flow of air into the lungs.. They had to give her an injection of a muscle relaxant so they could get tubes down her throat and nose with oxygen! Both doctors came out at different times and spoke to me in the recovery room, ensuring me that Cayla was fine and explained what had happened and why she had a nose bleed an a sore throat… We ended up staying in the recovery room over an hour waiting for the ‘ward nurse’ to come and collect us and take us back to the ward where Cayla’s dad was waiting. Cayla recovered fine and we gave her some panodil for her sore throat. She had some toast and apple juice, and after some more testing and removing the IV we were finally discharged to go home.
Of course I did some more research as soon as I got home and apparently Laryngospasm caused by anesthesia can be particularly deadly for children, leading to cardiac arrest within 30–45 seconds.. I’m not sure what to think but can’t help but feeling a bit uneasy about doing this twice a year with the risk of it happening again.. sucks.. We have a post-botox meeting at PMH in about 6-8 weeks time and I will bring a long list of questions regarding this (to me) scary condition and whether we could try the Botox without a general anesthetic (GA) sometime in the future? I know that older kids are having it done without a GA but not sure if Cayla is too young still. Ok, enough of this, I’m having a glass of red wine and then I’m off to bed.
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Finally School Holidays

It’s been ten weeks since the kids went back to school which means it’s time for two weeks of school holiday – yay! I have never been so happy to have a break from the usual routines than now… we’ve had lots of new routines with Cayla starting her new school and a bit of a change to our after-school activities. We have finally managed to get Nathan (nearly 8) to start doing a team sport… Well, he did play indoor soccer for a while 2-3 years ago but didn’t really enjoy it much. Since then he’s started scouts and continued with his swimming lessons once a week. Both Mike and I really believe that playing a team sport is important so we decided to give him a gentle ‘push’ in the right direction a few weeks ago by taking him to play outdoor soccer. He liked it and we couldn’t be more happy! However, this means he is now doing scouts, swimming and soccer which takes up 4 days of the week plus matches which will start from the 13th April..  oh well, we’ll see how it goes and if we have to drop an activity. He played his first game of soccer this morning and even though they lost (3-4), they had a great time!
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Cayla is only doing swimming once a week which is enough for her now when she’s started school full-time. I’m so impressed with her school and all the different programs they use for the students in all areas of learning and social activities. What’s more important is that Cayla absolutely LOVES her new school. She gets upset on the weekend as she can’t go to school.. hope it stays like that forever!
She was awarded an Honour’s Certificate a little while ago for settling in well to her new school and working very hard in her speech sessions. She didn’t know about the certificate and was really surprised and happy when the principal called out her name. She had the biggest smile on her face when she was standing on the stage with the other kids who was awarded with certificates. Super cute and we were of course super proud! I really hope she gets to stay at this school until year 3 which is the last year they can attend before they go back to their local main stream school. The first term is all about assessments and each child will be given a comprehensive IEP (Independent Education Plan) with individual targets and goals to work towards. We’ve just had our first Parent Meeting and she did score really low in most of the tests and assessments.. But that is to be expected, otherwise Cayla wouldn’t be at this school.
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We have had a crazy busy weekend with two birthday parties, baby shower, soccer game, and running/cycling training. My alarm went off at 4.20am…. can’t say that I love getting up that early in the morning but once I’m out there running, it all make total sense! I have completed ten weeks of Michelle Bridges 12 week advanced lean and strong program. I feel much stronger after all the weight lifting and it’s been great to try something out of my comfort zone. I’m about to buy some new running shoes but for some reason I find it really difficult to part with my old pairs…. what’s with that? Too many good memories maybe?? Or just weird?!?
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Cayla 5 years

Today is a very special day because today is Cayla’s birthday! She is finally turning 5 which she is absolutely over the moon about! She has been saying that she’s turning five soon for the last 8 months or so.. :)
Cayla usually wakes up first of everyone and comes in to our bedroom for a cuddle every morning, but today she stayed in her bed waiting for us to come to her. She was so cute giggling in bed when we sang for her and seeing all her pressies. We gave her Lego, a Barbie unicorn + doll, clothes, books, art and craft and she got a gorgeous princess dress, dolly and headband from her grandma (mormor) and Lars i Sweden. Nathan is building her Lego Pony Farm as we speak… We are catching up with family today for more celebrations. Mike’s brother Pete turned 30 yesterday and cousins Alyssa and Kate have both had their birthdays in March so we are doing a combined party in the park for everyone! Tomorrow after school Cayla is having a party with her friends from her new school at an indoor play centre and she is super excited!

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Back again

Hello again! It’s been ages I know.. I decided to take a break from blogging among other things during the school holidays and instead spend valuable time with my kids. We were really lucky to have my best friend and her family from Sweden staying with us over Christmas and New Years. The weather was good but not too hot, the kids played amazingly well and we had many lazy days by the pool just hanging out. It was really sad to see them leave but it won’t be too long until we catch up again.
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Mike went back to work beginning of January and me and the kids were busy pretty much every day catching up with people that we had not seen for ages. Megan, Cayla’s physio therapist from TCCP organised a two days a week boot camp over three weeks which was lots of fun! I hope they will do more of that during the holidays since we won’t be at the centre very often now when Cayla is at school full-time.
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Other than the boot camp we didn’t have to many appointments booked in which was really nice. Only a post Botox meeting at PMH to review the effects of her last injections and set a new date for the next one. The post-botox meeting went well too and Cayla is booked in for her next Botox in April sometime. She will probably need some serial casting afterwards but that’s ok, we knew that already. It’s difficult to keep up with stretches etc when they grow so quickly at this age and serial casting is a very cheap and effective way of stretching muscles. Cayla is not bothered so neither are we anymore. We have also had an appointment with a paediatric ophthalmologist. The health nurse at school checked Cayla’s vision twice last year and she failed both times so we decided to take her to a specialist to make sure nothing was wrong. We have already had her vision tested at PMH about a year and a half ago and everything was fine so hopefully this test would be too. $285 and 40 minutes later we came out and everything was fine.
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The holidays went by way too quickly and suddenly it was time for the kids to go back to school and their after school activities. Nathan is starting year 3 and Cayla pre-primary! Both of them are doing swimming lessons and Nathan also has scouts once a week. Cayla was so excited on her first day and couldn’t wait to get there. I was fine until we were about to leave.. The teacher asked Cayla what she got for Christmas and Cayla answered something that the teacher couldn’t understand… I heard what she said and wanted to go to her and help out (as I always do)….. Even though I know she is in good hands at this school it broke my heart and made me cry. Cayla was absolutely fine and had a fabulous first day.
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So it has already been two weeks and things are still going well for both Nathan and Cayla. I am also getting used to having a lot more time on my hands with both kids at school every day :) I’m training a lot and spending about four days a week at the gym on top of my usual running. I have started a 12-week weight lifting program hoping it will make me lean and strong so I can run more efficient and avoid injuries. I have never done much training in the gym except fitness classes so feeling slightly uncomfortable but slowly getting there! Next race will be Darlington Half Marathon on the 16th March.

About two weeks ago Cayla fell on our wooden floorboards when jumping on top of a bean bag at home and hurt her front tooth… Can’t believe it has happened again as we only had one of her front teeth taken out at the same time as the Botox in October last year..! It did not look great and we straight away knew that it would have to be removed.. and after a visit to the dentist that was confirmed. The root of the tooth has been damaged and we will once again have a tooth removed with Cayla’s next lot of Botox in April. Front teeth are so overrated!
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So there we go, finally a bit of an update on what we have been doing the last few months. Will write more about Cayla and her new school soon. It’s such a great school and we are so so happy that she has got this opportunity! 

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Trip down South

It’s the day before Christmas eve and we are gearing up to celebrate Swedish Christmas with my Swedish friends tomorrow! This year we are hosting Christmas at our house and expecting 26 people..! 14 kids and 12 adults……. wish us luck! Celebrating Swedish Christmas is a massive highlight of the year and I’m so happy to have my gorgeous friend Michaela with her family here in Perth at the moment. The kids are playing non stop every day and spending hours in our pool which must be our best investment as yet! We are having a great time just hanging, drinking wine and eating cheese.. and our trip down south was awesome! First we spent one night at Preston Beach and then three nights at Yallingup Forrest Resort before heading back to Perth. The weather was perfect and we spent most of our time chilling out at different beaches in the area. After two days of rest I went for my first run after 6inch, only a short easy 3km loop on a beautiful forest trail near our resort.
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It’s great to go for a run and finally do a proper stretch… something that I didn’t really do after the race. I went for an easy 9.5 km with my usual running group yesterday and my legs are feeling really good! Very happy to have recovered so fast as after the Perth Marathon I couldn’t/wanted to run for a good few weeks afterwards. I haven’t decided what races I’m doing next year but will have a proper think over the Christmas break.
I’m just about to make a veeeery yummy ginger thins cheesecake for tomorrow’s celebrations. I make this every year and have posted a photo with the recipe below but unless you’re Swedish you may find it a bit difficult to understand!

Merry Christmas!

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6 Inch Trail Ultra Marathon Finisher!

Four days ago I completed my first trail ultra marathon; a 47.3km hilly race from North Dandalup to Dwellingup south of Perth! It was a very hot race (about 38degrees) and I’m absolutely stoked to have finished it! This year we have raised more than $4000 for
Cayla and other kids with Cerebral palsy through The Centre for Cerebral Palsy (TCCP). A huge thanks to our friends and family who have supported us and donated to Cayla’s Challenge, we love you!
I have my best friend and her family from Sweden here at the moment and we are chilling out in Yallingup about 3 hrs south of Perth as I’m writing this. I’m recovering really well from the race and I’m looking forward taking it easy over the next few weeks. Here are some pics from Sunday morning, love looking at these photos, so many great memories!

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Last day of Kindy

Yesterday Mike and I went to school for Cayla’s class Christmas concert and end of year party. They were so cute and did a fantastic job with their singing and presentation. Cayla thanked everyone for coming to the concert without using her talker and we are so very proud of her! Cayla’s last day was yesterday and she has now finished off her first year at school! It’s gone super fast and I still remember that first day of kindy, or maybe more the day before… how nervous I was.. and worried about pretty much everything. But it’s been such a great year, her teacher and aides have been awesome and Cayla has come so far. She is now counting up to about 20, writing her name and know pretty much all the sounds and a lot of the letters as well. She has made many friends in the class and hopefully we will stay in contact even though she will be going to another school next year.
Nathan still has a couple of more days at school before he finishing for the year and last night he attended a Halloween disco that the school arranged. It was very well organised as usual and he had an awesome time!

Gotta go now, we have a very busy weekend ahead! My best friend from Sweden is here with her family and it’s AWESOME to hang out with her! They are loving the warm weather and swimming in the pool most of the day. Can’t wait to have a proper drink with her but that will have to wait until tomorrow after I have finished my 47km trail marathon!! Woohooooo! It’s going to be about 39 degrees but hopefully we will have finished the race before it gets too hot! Four months of training and I’m feeling pumped!! Wish me luck and if you haven’t already donated to Cayla’s challenge please follow this link to make fast secure online donation :D
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Last playgroup and hydro

It’s the end of the year and the ‘silly season’ is about to kick off or possibly already has! I don’t really mind as our Christmas tree and decorations are up and all gifts are wrapped and hidden in our walk-in-robe! We have bought some more outdoor Christmas lights and it looks awesome and the kids loves it! Things you have to do when there is no snow outside and both Mike and I get pretty excited about it…! Though I wish the inside of my house looked like the picture below, it looks amazing! Just need an open fire and a dog..
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Both Nathan and Cayla are going well but I think we can all agree that it will be nice with a long Summer holiday soon. It’s been a great year so far and Cayla has come so far in many areas which we are so happy about. Her speech is not amazing but she is definitely improving! I feel so much better after we found out that she got a place at the Fremantle Language Development Centre (LDC). Not sure if she understand but we have told her that she is starting a new school next year and bought her a dress (uniform) which she loves. It’s a little bit sad that the kids are not going to be at the same school but at the same time I know that for Cayla this is an amazing opportunity and we are all still jumping out of joy that she got a place! Today we went to TCCP for her last playgroup and hydro pool session and met up with Cayla’s little friend Sienna. It’s a bit sad that we won’t go to TCCP for playgroup and hydro anymore and it’s crazy that she is starting full-time school next year.. I reckon I will feel really lost for a few weeks, or days at least ;)
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Well, it’s crazy how time flies but I have finished my big training load in preparation for the 6inch trail marathon (47km) on the 15th December! It’s been full on the last four months but I have really tried to take every day and week as it comes and put in my absolute best. I was doing fine until a couple of weeks ago when I did about 90km of running in one week, after that I started to get a little niggle in my calf. Went for a sports massage (or three..) but it wasn’t until I saw the physio for some needling and ultrasound that my leg started to feel better. I have also bought a pair of new shoes which has helped a lot. I really enjoy trail running and find it quite boring to run long on the road now. The first time I went down to North Dandalup where the start for the 6inch Trail Marathon is I really had no trail running experience at all. A friend picked me up at 4.30 in the morning for a 5.30 start. We did 17km out and back without getting too  much lost… and no snake sightings at all! It was a very hot day with 37 degrees so it took us over 4.5 hours but that was including stopping to ‘eat’ 5 carb gels, 3 x wee stops (weird since I never wee on a run.. must have been nervous!) plus getting a bit lost on the way back.
A few weeks ago we headed down to North Dandalup again we decided to do an A-to-B run instead of out-and-back as we wanted to see more of the actual race course. We took two cars and left my car at the 28km mark and drove my friend’s car back to the start and off we went. This race start with a tough climb of 300m over 1.5km.. and we were walking most of it but I’m sure the elite runners will just blast up that hill on the actual race day! We were running along fine until we got to the 17km mark.. that’s when I realised that I had forgotten my car keys in my friend’s car…..!!!!!!!! WTF!!! Very annoying, but luckily we were only 3kms away from the main road that would lead us back to the start. I’m so glad we didn’t run the whole 28kms to my car and then realised this horrible mistake…! I can add that there is absolutely no reception in this area… my friend was not too impressed. So we ran to the main road and then followed it 11kms back to the start. We had run about 31km at this point but our plan was to run 37-38km. My friend had a sore ankle and had enough but I felt really good so decided to do a few more k’s and finished of at 36km. Job done but I am never ever going to forget my keys in someone’s car again..! Lesson learned the hard way..
Last Saturday we did our last long run, it was a run that I was a bit worried about for some reason. We had to do 40km and decided to stay in the city and do this run on a flat road instead of the trails. I had been battling negative thoughts, crappy runs and a sore leg all week so it felt awesome to SMASH out my Peak Long Run of 40km feeling that great! Still can’t quite believe that I just ran 40kms in a training run.. crazy..! It’s amazing how you little by little can condition your body and mind to run long distances. Though there is no doubt that there has been a lot of hard work involved to get where I am today but that just makes this whole experience more satisfying.
Bring on the 6inch! :D
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Funky Monkey to Red Devil

Another week (or two..) has passed and lots of things has happened! The busy Christmas season has not even started and my calendar is full of things pretty much every day of the week. If I’m not out running or taking Cayla to appointments I’m out photographing a wedding, attending a birthday party, doing paper work, cleaning the house and so on.. but hey, I’m not complaining it’s all good :)

Last Sunday was Tough Mudder and believe it or not I had a GREAT time! It was muddy, wet and crazy but so much fun and I managed to complete all obstacles without too much trouble. Even the “Funky Monkey” (see photo below, I’m to the right in the picture) which was about 20 or so monkey bars to swing across. Plus I didn’t really get electrocuted at all, not sure why but I only got a small zap on my butt when crawling through one of the obstacles and did not get zapped at all in the last crazy 10000v obstacle! It was a very well organised event, great team experience, lots of fun and we will be coming back next year! But next year we’ll bring Gatorade as one of our team members got major cramp the last 5km but he still finished the race!
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The kids had their yearly Sport’s Carnival last week and it was such a hot day, sunny and 35 degrees..! It was Cayla’s first sport’s day and she did so well in her 50m race, yes, she did come last but not by too much. She was so hot and tired afterwards and didn’t really want to join in the obstacles with her friends. I don’t think she was feeling 100% and was actually home with a runny nose the next day poor thing.
_DSC2319Because Cayla wasn’t feeling very well we didn’t do anything for Halloween which was the day after the Sport’s Carnival. However, after seeing heaps of photos of kids out trick or treating on Facebook I felt a huge quilt trip coming over me and decided to be a good Mum, get organised and throw together a Halloween party for the kids on Friday night instead! They loved it and at least now we have some Halloween decorations for next year….!
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It’s not long until the 6inch trail ultra marathon and I’m training most days of the week. My midweek long run is up to 17km and because Mike is out cycling that morning I have to do this run on the treadmill….. yes people.. 17 kilometres on a treadmill!! It’s beyond boring…….. but sometimes you just have to get the job done..
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My upper back and calves were pretty sore after Tough Mudder, not used to all those obstacles!
I have recently started a 30day cleanse and detox program with only natural products in the form of shakes and supplements. I’m using these products as add-ons to my usual diet as I’m not trying to lose weight and burning a lot of calories from running. I’m only on day 5 but hoping that it will give me some extra energy which will be great in the weeks leading up to the trail marathon in December. At the moment I’m feeling a bit so and so to be honest but probably because my body is getting rid of horrible toxins. Hopefully it will change for the better in due course! I did 31km on Sunday morning and felt pretty good. This weekend I’m doing 35km on the trails with a friend. She’s picking me up at 4.30am as it will probably take us about 4-4.5 hours and it’s going to be a very hot day on Sunday. Hopefully we won’t get lost… or step on a snake….! There has been quite a few snake sightings lately….. maybe I should stick to road marathons instead..!austrailia_kill_you

Today we’ve been to TCCP as Cayla had an appointment with Dana and Michael at The Lower Limb and Foot Clinic. We see them about once or twice a year to review Cayla’s gait (walk pattern) and talk about serial casting and so on to improve things. I was expecting 3-4 weeks of serial casting as we always do this after Botox and was just hoping they didn’t want Cayla to have serial casting on both feet…. But you know what! Her range of movement is pretty good and they didn’t think she needed any serial casting done at all this time…!!! Yeah! Yeah! Yeah! Woooohoooooooooooo!!! I’m so happy I could fly to heaven! We just have to continue to aim for overall symmetry and do exercises where she will put more weight on her left foot by riding on her scooter and so on. Cayla’s physio Megan will see her for a few physio therapy sessions and give us a new home program to work on for the next few months. First a place at the Fremantle Language Development school and now no serial casting – happy days!

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