Lunch today will be roast beef with a side dish of vestibular stimulation

I'll be the first one to admit that I'm struggling a bit with Max's new 'zest' for life. Please don't get me wrong, I am so happy that we are finally doing a program that is helping him. It's just that it literally happened overnight. Last Monday, Max was fairly passive and vague when I started the Snowdrop Program. Last Tuesday, Max was hyperactive, inquisitive and demanding. I love seeing him so alert, but the sudden change in his personality requires sudden parenting adjustments. He's also teething, so we've had lots of screaming and bugger all sleep. Getting him to sleep at bedtime has become a nightmare. I'm starting to feel as though I'm drowning.

For us, a fairly typical day (lately) starts at 2am, when Max decides that he's had enough sleep and is ready to start the day. It takes around 2 hours to get him back to sleep. At 5am, he's awake again and the day begins. I'm now in the process of changing his sleeping routines and teaching him to self settle. Yes, I should've established this long ago, but the sleeping routine has been kinda low on the list of priorities. You see, one of the issues I have, is that, our therapy schedule is so intense that I often forget the 'normal' baby stuff. (ie oh bugger, when did he last have a bottle???)

On an average day, I complete our Snowdrop program with him twice a day- morning and evening. That involves- deep pressure massage, brushing, tactile and vestibular stimulation exercises, as well as exercises for his visual tracking. We also do some constraint therapy- holding down 'lefty' to force 'righty' to grab the toy. A big component of the program is giving Max lots of exuberant praise. This releases dopamine and that helps to 'cement' the new neural pathways I am helping him develop.




(This is our play/therapy area)

Incorporating different sensory experiences into his day, is a big part of the program.


(This is the 'sensory' box that I've made up for him)



Most days, I make him a 'salad' for lunch. He loves the veggies plus it's another way of incorporating different textures and sensations. The choice of food is important too. Because of the damage to his brain, he is extremely prone to constipation. He also struggles with anemia, so including iron in his diet is really important (and iron exacerbates constipation). Zinc and Omega 3 are both really important for brain development, so I make sure to include that. Plus, there's all the usual baby nutritional needs like protein etc etc



(I've just started putting all of his favourite toys in one box as a problem solving exercise. I call it the 'for the love of god can you please entertain yourself for 5 minutes' box)


Throughout the day, I sing him lots of nursery rhymes. This is to help his language development- there's something about the rhyming that benefits language acquisition (I can't remember the proper explanation!!). I also talk and talk and talk to him, just as if I'm talking to another adult. I pause to await his response as if we are having a conversation.

Lots of kids who've had strokes, struggle with language acquisition and exposure to different languages is extremely beneficial. I purchased some baby sign DVDs that we've recently started watching. I'm a bit annoyed though, that the signs they teach are pretty useless. Yes, he can sign 'stars' but what is the bloody point of that?? He's in bed long before the stars even come out. I'd kind of hoped for something a bit more useful like 'hungry' or 'pain'. Ah well.

I also have some Italian flashcards on my iPhone that we go through from time to time. It amazes me how much he loves them.

We also read stories every night.
We read the same few stories over and over again, as this is the best way for him to acquire language. It's really hard to motivate myself to read the same stories, so I add different sound effects and accents. When I've totally had enough, we change books.

Then, there's the music.....lots and lots of music. Because, music activates both hemispheres of the brain, it is excellent in helping him learn new information and skills. Max LOVES music. He likes Ella Fitzgerald, Louis Armstrong and old school Jazz. He likes songs from musical theatre. He loves his playschool CD. He's also pretty partial to some hard core techno music. And Mozart..... he adores Mozart. As soon as the opening strains of the Concerto for Piano and Orchestra begins, he blisses out.

There's also the physiotherapy and occupational therapy that he needs every day. If I didn't do them, his muscles can easily become rigid and his joints get stiff.

I try so hard to strike a balance between therapy and relaxation but it's tough. Luckily, I've figured out ways to make things most things fun- a few fart noises here and there works wonders. I have a very strict rule that we MUST have at least one good belly laugh each day. I think the twinkle in his eyes and his killer smile, speaks volumes.




Exhibit A




Exhibit B

I enjoy every second that I spend with Max- ok that's not entirely true at 2am. But, at the same time, I'm so damn tired. I recently got some advice that really hit home "this journey is a marathon, not a sprint".


At this stage, I'm not quite sure exactly how to put this into practice.




The shuttlecock was meant to be a tactile toy. Apparently it also makes a pretty good pacifier ;-)


Posted using BlogPress from my iPhone

Can anyone help?

I'm a big believer in doing my own research rather then always relying on the experts to have the answers. But at the moment I am stuck. The problem is that we are on a waiting list for our local 'Early Intervention Program' & this is likely to take about 6 months (gotta appreciate the irony of the term 'Early intervention'). The physiotherapy department at RCH has offered their services in the interim but even that has a 6 week wait. I can't even begin to tell you how much this pisses me off but I'll save my rant on the shortcomings of the public health system for another day. I need help coming up with other strategies for getting Max to use his right hand and ideas to help him relax it more (it's always in a fist). We do a lot of massage and prompt him to grab with his right hand but I wonder if there's more I could be doing? My beloved Dr Google has been no help whatsoever. There is so little information on stroke rehabilitation in infants. Much of the information is about recognizing a stroke in babies (thanks but you're too late) and rehabilitation in adults. Ergh! When Max first got sick a lot of people asked if there was anything they could do to help. At the time there wasn't but if you could help by offering suggestions, suggesting links or even sharing this page via Facebook/twitter so that more people can see it, that would be much appreciated.

Physio Nazi

I stayed true to my word about doing physio with Max every time he was awake. Often this was as simple as sitting him on my lap to help his head strength and other times it was more intensive. I massaged him at least twice a day on his bad side and never left him to lie in bed staring at the TV. I often forget those early days and how far he has come since then so I thought I'd write it all down here. When he first came out of ICU he struggled to suck his dummy because his facial muscles on the right side were so weak. To counter this I always put the dummy in the right side of his mouth-within days he was sucking again like a champ. He could only turn his head left and his eyes were always looking left. His right arm was very weak and his hand always clenched. His left leg was surprisingly unaffected but I always did exercises on it anyway 'just in case'. His eyes didn't focus and he wouldn't track things with his eyes. He didn't babble or smile anymore. He didn't show any sign that he recognized me. When he did tummy time he couldn't lift his head anymore. I had to support his neck again like a newborn baby. I'm now pleased to report that now you wouldn't know that anything had ever happened to him. Bit by bit he has regained everything he lost and more. He is now back on track with his developmental milestones. the only thing that still needs work is his right arm as he still favors his left. It's so nice now to be able to put him on the floor with his toys and let him play in his own way for awhile without the pressure of physio all the time. We still do alot with him everyday but I'm far more relaxed about it now. I'm so proud of mysel for staying true to my word but I'm even more proud of him.

Starting Physio

Because he could only look in one direction (left) we'd been instructed to put all of his toys on the right and make the left side really boring. Max had already amassed a heap of new toys since we'd arrived, so I moved all of them to the right side of his cot. It looked a little silly and lopsided, I half expected it to tip over. I'd decided to do some form of physio with him everytime he woke up. This might sound a bit harsh but baby physio is really nothing more then the normal things you'd do with a baby but just a little more structured. I didn't enjoy it initially, every physio session was a reminder of what he couldn't do anymore. He was able to move his arms and legs but he was weak on the right hand side. The most frustrating thing was those damn eyes, looking to the damn left all the damn time. I'd talk, sing, make funny noises and jiggle toys in his face, generally with no response. It was those rare times when he did glance straight ahead that motivated me to keep going. By the end of our first week on the ward we still had no answers as far as platelets were concerned but my little man was moving all of his limbs and looking me straight in the eye! I can't tell you how happy I was when he started babbling again and I swear his first 'word' was noooooo! Thes best part though came when he looked into my eyes, held my gaze and gave me a beautiful gummy smile.