It’s been 8 weeks since Cayla’s Botox injections at PMH. She has since then had about four weeks of serial casting to stretch the muscles in her left leg and foot. Apart from a small pressure sore on her heel she’s done really well and we managed to get about five degrees dorsiflexion. She has got a new pair of AFOs and she picked the same pattern as last year; purple butterflies.
Earlier in the week we had our post-botox appointment at PMH. This is where we meet with a pediatrician and a physio therapist where they will assess the effects of the Botox injections. I had quite a few questions and wanted to talk to them about Cayla’s laryngospasm that happened during her last GA. You can read about that here. We really don’t want to be worried every time she goes under a general anesthetic which is twice a year for her botox injections.. There was a new pediatrician there that I have never met but apparently she was in the room when Cayla had her last botox so she was aware of the issue re laryngospasm. We spoke about it whilst the physio was checking Cayla’s legs and feet. It was a good chat and the pead pretty much said that they are not overly keen on putting Cayla under a general anesthetic as it is a very high risk that it will happen again They are not 100% sure why but think it has got to do with the lack of saliva control. We talked about possibly doing the injections without a GA but we’re not sure Cayla is old enough yet and I don’t want to freak her out either. So our plan of action is a referral which will be sent to the orthopedic clinic for a specialist to access her in regards to a future surgery. This won’t happen in the next year or even two so no dramas but it will be good to get some more information about our options. Until then we have to control her tight leg muscles with stretching, AFOs, serial casting and Electrodress (Molli). We have so far been using the loose electrodes but will try the outfit when we go to Sweden in a few weeks time. I have no clue how it all will work out but definitely happy to give it a go. The Botox injections have so far definitely been a great help and Cayla is walking better than ever. She is putting much more weight on her left leg and have recently been discharged from the Hip Surveillance Clinic at PMH which is great news! We will also inquire about the WalkAid but that will have to wait until we’re back from Sweden. 12 more days and we’re on the plane!!
A few photos from Nathan’s life in the last few weeks; he’s been invested to Cubs Scouts, received an Honors Certificate, and participated in the school’s yearly cross country carnival. Go Nathan! Also big congratulations to my sis Linda who have just graduated from a Swedish gymnasium. This is a secondary school which prepares the student for higher education at a university – well done Linda!
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!
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.
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?!?
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!
Nathan has had gastro most of the last week but is finally getting better! We have managed to get to some of the swimming lessons booked in but have mainly spent our days lazing around at home. It is pretty cold in Perth at the moment and the houses are freezing cold inside which I dislike. Brick houses with no or very little insulation and no double glazed windows so the gas heater is on most of the day to keep us warm. But, I shouldn’t complain since we still have sunny days with around 20 degrees in winter so could be worse!
I have finished my first training week with a coach and is feeling pretty tired. I haven’t done any interval training since I started my running journey, just different distances with a similar pace and RPM (indoor cycling) once or twice a week. This training schedule has two interval sessions a week, one tempo run, a long run and some recovery runs in between so will see how I go. The second interval training on Thursday morning was fast and fun! We did 200m x 6 fast running with 200m steady running in between. Repeat two times plus warm-up and cool-down. Hard work but loved it!
Last day of the holidays today and we have been to “Disney on Ice” which was an awesome show! Cayla loved it but I think there might have been just too many princesses for Nathan’s liking! Luckily they had slushies for sale to keep him happy and entertained ;) Afterwards we had lunch at the big M, not my choice but I was just too tired to say no…. Time for a ‘mama nap’, it’s been a busy day zzzzzz
After coming back from school drop-off this morning a letter from PMH was waiting in the mailbox. It was the results from Cayla’s neuropsychological test she had done a couple of weeks ago. The peadiatric psychologist said she would contact us and let us know the results either over the phone or in person so it was a bit strange to receive a letter in the post. Anyway, in short and from what I can make out of it, the results are alright! Cayla shows good development of general cognitive skills (age appropriate) and (as we already knew) her development of language skills is more delayed with expressive language skills much worse than receptive language skills. It was recommended that a review neuropsychological evaluation in 2-3 years may be helpful in monitoring Cayla’s development in order to detect and provide appropriate intervention strategies. I’m feeling pretty happy with the result and this will give us an indication on what areas we need to focus on over the next couple of years. Not sure where to go from here but as long as she is enjoying kindy and keeping up with her friends then that is all we can ask for right now I suppose. We continue to take Cayla to speech pathology sessions at TCCP but also through two private services. Her “talker” (Vantage Lite) will also be an important part in the long-term plan to improve her speech and language. Just need to get into habit of using it..
Cayla is still sick so had to cancel her physio appointment and hydro therapy that was on today’s schedule. I was too tired to get up for a run this morning but did a hill/interval session on the treadmill instead. I knew my treadmill would come in handy now and then! Actually, it was on the treadmill my running journey began when I decided to do the “couch to 10k” app about 15 months ago (thanks Karen B!). I still do some running on it but only if I really have to… It is a lot more fun to be running outside for sure.
My training is in full swing and I am really enjoying it. On Sunday I did 24km which is the longest I have ever run so feeling pretty chuffed :) I felt alright afterwards and went home and tried an ice bath for the first time.. VERY cold but my legs felt great!
I haven’t yet decided what races to sign up for this year but we are definitely doing the Joondalup 1/2 marathon in May again and maybe improve my time as well.
To get up for a run this morning was tough I have to admit… Cayla was up in the middle of the night complaining that she was sick and I didn’t sleep very well.. But I’m always tired that early in the mornings so it’s just to get up and get out there.. An hour later, stretch and coffee and I felt fine! I promise, I don’t get up early every day of the week.. only when I need to do the longer runs! Though I can’t describe how beautiful it is to run along the river at Matilda Bay as the sun is slowly rising over the hills in Perth…
Unfortunately Cayla is a bit sick today so we are just having a chill-out day at home watching movies. Olive leaf extract should sort it out and hopefully she won’t pass it on as I really can’t be bothered getting sick…
Lately I have been trying to cut out gluten from my diet and it makes me feel a lot better. Not that I had any particular health problems before but just wanted to reduce our wheat intake and see/feel the change for myself. I found it difficult to come up with breakfast but I make a super yummy smoothie a couple of times a week that I just have to share. It’s a Berry Cardamom Smoothie from the Gluten Free Cat’s website www.glutenfreecat.com
You will need: Almond Milk, Protein Powder, cardamom, almond butter, soaked chia seeds, blueberries, blackberries and mango. I just use whatever frozen berries that I have in the freezer and skip the protein powder if the kids are sharing. The cardamom makes is taste great! You could try cocoa powder if you want a more chocolate flavour – yum! Great that we are spending the day at home as we just received two big parcels from the post man! New funky bibs for Cayla from Sweden and a pair of new running shoes for me! Woohoo! So excited and can’t wait to try them out :D
It’s been a great week so far and Cayla has been to conductive eduction, physio therapy and hydro therapy. We also had an appointment booked in to do serial casting for moulds for Cayla’s new AFOs (ankle foot orthosis) but it was decided to postpone it until after her next Botox as she is quite tight right now. Cayla has finally been accepted by Princess Margaret Hospital (PMH) for her Botox and our consultation is sometime in March.
It’s was nice to be at the centre (TCCP) this week and meet up with some familiar faces at playgroup and hydro. It’s funny how different I feel being there now compared to say 18 months ago… I hated going there, it felt like an old mental institution.. Now it doesn’t bother me at all. Cayla likes it there to and keeps running ahead of me to say hello to different people, doing lots of fun things in the playgroup, or trying to get me to buy her an ice cream from the cafe!
Having fun at playgroup at TCCP!
Today was Cayla’s 2nd day at kindy and what a difference it was emotionally for me. Yesterday Cayla’s physio therapist Megan made a visit to school to give the teacher and EAs (Education Assistance) some general information about cerebral palsy and also to talk to them about Cayla’s AFOs and show them how to take them off and put them on properly etc. It is really important that this is done right or she may get blisters which means she can’t wear them at all until it heals. I have also had a chat to her teacher and the principal about some minor worries that we had and it’s all good.
So this morning I had no tears when saying good-bye and Cayla was happy as usual. A few kids cried and one had a major tantrum leaving his mum poor kid… So glad that Cayla doesn’t have separation anxiety, that would make it a lot harder.. Today they made biscuit faces (biscuits, icing sugar, lollies and sultanas), I remember when Nathan did his in kindy. I would have taken a photo but Cayla ate hers before we got to the car! A step for the toilet has been delivered to school which is good, still missing a rail but that’s ok for now.
It has been stinking hot lately and even though I love warm weather it is a bit too hot to run… I prefer running in the mornings but it’s not nice when it’s 28 degrees at 5.30 am…! After dropping the kids of at school today I went to see a sport physio in the city to sort out my niggling pain in my shins (possibly shin splints).
I have had this pain for a while, it started already last year when training for the 1/2 marathons. I though I better check it out before it gets any worse, especially now when I’m running 5-6 times a week. So after the physio asked me some questions, examined my legs, made me do some exercises he gave my poor calves the ‘massage’ from hell..! It was super painful and I tried to put on a brave face…. aaoooch!
BUT it felt great afterwards and I had next to no pain in my shins at all. He taped my right foot to help support the arch, something called ‘Low Dye taping’. This technique is designed to support the arch of the foot, improve foot posture and reduce the stress on the foot and lower leg during a run or other activity. He told me to go for a run this evening and recommended ice-cube massage afterwards. I was given a sheet with some strengthening exercises to do every second day as well. I went for a short 6,5k run this evening and felt no pain in my shin what so ever -yay!
Happy Valentines Day everyone! Hope you got to spend it with some special people, I know I did which I am ever so grateful for :)
Up late thinking, crying, drinking wine and eating potato crisps, how pathetic am I………! People around me are ever so excited about their kids going to school. Tomorrow Cayla is starting her first day of kindy and I am seriously feeling sick to my stomach.. I’ve done my best to prepare everything and she has got the cutest Tinkerbell bag, lunchbox and new pink cup etc. I’ve bought her a uniform to wear and she is very excited! Everything is labelled and bag is packed but I’m feeling so not ready and not sure what to do with myself.. I have been so busy with organising her therapy lately that this day had just sneaked up on me way too fast.. Sucks big time but hoping that all my worries will be gone tomorrow morning.This was how I felt last night….. I woke up feeling the same, very teary and emotional.. plus feeling really yuk about the crisps and wine consumed way too late at night…..
Oh well, we left Cayla at kindy and she was absolutely fine saying good-bye and sitting down on the mat with her new friends, me…. not so much.. had a bit of a cry outside school and then drove off to the gym for a seriously hard RPM class! I felt so much better afterwards and then met up with my dear friend Karen for lunch and supportive chat at our local pub.
Came back to school in the afternoon and Cayla gave me a lovely necklace made from dried penne pasta and the teacher said that Cayla has had a great day! She said that I had absolutely nothing to worry about and that Cayla was actually doing even better than some of her peers. So that’s it, first day of kindy done and dusted! Next week she is going back one more day before the real schedule starts. I feel like a huge weight has been lifted from my shoulders and I’m feeling confident that Cayla will have a great year ahead. There will no doubt continue to be an emotional roller coaster but right now, today, I am feeling great :) Yay!
Wow, both my ‘babies’ have started school… crazy stuff! Where did time go?