On a daily basis, I feel the guilt of him not being able to live a normal life. But without all of his treatments and therapy, we wouldn't have anything close to the semi-normal life we have...
Botox therapy : Which for us is multiple injections sites into both legs... his left arm ... Multiple appointments to double check his weight, his height, the pre-meetings, the post meetings .. And the multiple days before admission to make sure he doesn't catch anything, as he has this treatment under GA.. and the days after when he doesn't feel well.. is still groggy .. and we have to keep an eye on his asthma to make sure that he doesn't have a reaction to it..
Serial Casting : Happens 4 weeks after Botox therapy ... It is BOTH LEGS in plaster up to his knee ... He wears the plaster on and off for 5 weeks ... It is a 8 hour process from putting it on .. to make sure it dries and doesn't crack on the inside while he is walking around on it ... he has it put on for 6 days .. then on the last night it is cut off at home (by soaking it for 2 hours in warm soapy buckets - while he watches a movie) ... so that he can have a proper bath .. and we have yet another day off school for a round of physio .. then the plaster is put back on again .. with an extra few degrees stretch in his ankles .. and more weighting on the base to weight his leg and pull his knees into alignment.
PITS Therapy : Once the plaster is off .. we have intensive physio .. on top of our normal weekly physio sessions .. He has one session for his arms with his OT & a session for his legs with his physio ... this is on top of the private OT & Physio sessions we do... And it is to make sure we get the best stretch of his muscles from the botox and to make sure it lasts as long as possible .. preferably to the next botox therapy session..
Physiotherapy : Is every week ... at home ... he has an hour session with his therapist ... and then we do an hour worth of phsyio at home per day too with mummy and mason ... just playing games that get him to stretch his legs out .. and his arms too!!! It involves lots of stretches ... lots of screaming .. and more importantly lots of meltdowns!!! To him .. stretching is the biggest pain he goes through ... and he hates it!!! (his own words)
Occupational Therapy : Is a bit of everything at the moment ... we are trying to tackle lots of problems .. mainly independence .. something simple like being able to go to the toilet by himself .. (which he still needs assistance) ... not the actual act of going to the toilet ... but dressing .. washing hands.. opening doors .. flushing toilets .. he doesn't have the physical strength to do it ... Dressing is something he just can't do properly .. he can't put a t.shirt on properly .. the act of lifting his left arm up enough to get it on by himself is hard .. OT for us also involves our Sensory Processing Disorder though ... The stimulation .. the meltdowns .. the lack of eating .. EVERYTHING!!! OT is done twice a week .. and after botox .. 3 times a week .. Crazy right?!
Speech Therapy : At the moment we have just had our tonsils and adnoids out .. so are still dealing with the repercussions ... it involves everything from being able to talk and say our words properly .. Our tongue and getting it to work like it should ... his gag reflex .. and his sensory eating ... Let me tell you .. if I was to talk about it on this post ... You would need a cup of coffee and a slice of cake!!! We do this three times per week .. once through TCCP .. once privately and now through our SOS feeding team!!! CRAZYYYY
Sensory Integration : It is play therapy basically ... trying to get him to overcome his phobias .. his sensory problems .. desensitizing his reactions ... and trying to re-program the way his brain takes things in .. There are sooooo many different things we are trying it is sooooooooo hard to list them all ... If you want to know more .. feel free to private msge me on our DRIVING MISS MUMMY CRAZY facebook page ... :)
SOS Feeding: Is our newest one ... We have been accepted onto a team that helps with his sensory eating problems ... the way it was described to me is changing his brains reaction to food .. how he thinks about it on his plate .. how he perceives the texture .. taste .. smell .. etc .. all through play and positive learning ... I pray to god that it works ... because him surviving on 10 food items ... is the biggest thing that drives me crazy ... that and the meltdowns that surround it!!!
Between all of these things we do every week .. plus school .. cuddles .. cooking (only some days - thank god for freezing left overs!!!) I have probably missed one of his therapies to be honest lol but it escapes me right now .... But between all of these .. I really don't know how we find any sense of normality!!! Our life is just CRAZY BUSY ... And I guess that is really where my pseudo blog name is derived from!! Throw on top the impending little league & practise ... I want to officially Welcome you to our life!! Is yours as crazy as ours??!! We can't be the only ones .. surely???!!!