Saturday, September 28, 2013

SOS Feeding!!

So the day I have been waiting for ... FOR MONTHS NOW ... really though it felt like a lifetime ... like when your a kid and it is January .. and your already waiting for Christmas!! Take that type of anticipation... bottle it and give it a bit of a shake... and then you will have a glimpse of my life for the last 3 months .. We had our assessment last week .. they came out and wanted to see his reaction to foods he does and doesn't like ..

Nothing was unusual to me ... the screwed up nose .. the dry retching .. just thinking about having to put something in his mouth ... To make matters worse .. our safe foods have been slowly creeping down to almost nothing ... He won't drink his Sanitarium Up and Go drinks that I have been using for the last 2 years to keep weight on him in winter .. When I lost those out of his safe list ... My heart sank to the bottom of my stomach ... I swear you could hear my heart breaking from the next suburb.

There are soooo many golden rules in SOS feeding ... It all starts with an OT and a Speech Therapist ... assessing the way he sticks things in his mouth .. how he chews ... how he pockets his food in his cheeks so he doesn't have to swallow ... and how he gags .. what makes him gag ...

I think I will have to post some of the info on the hand outs for you ... The food pyramid is soooo interesting ... kind of makes things fall into place!! Can't wait to have a spare 10 minutes to ramble (yes I know) onto you about EVERYTHING cos there is just soooo much useful information getting thrown at me that I am having to process most of it!!

We have sooooooooooo much going on at the moment .... Not only do we have 4 separate OT's we are doing serial casting ... to both knees in plaster ... to increase the degree and effect of the Botox .. LIFE IS CRAZY .... hopefully with school holidays upon us and not having to do double therapy and run back and forth to school as the clinics go on holidays too ... that we will have some quality time!!! Had a wedding too on the weekend (hence why I didn't post - sorry) and more coming up!! Along with all our sensory stuff that I have a HUGE backlog of ... Can't WAIT to share it all with you!!! 

Sunday, September 15, 2013

Hair Washing Trauma

For Boogie his sensory integration problems, mean soooo many different things ... Loud music is now a no go ... even though he used to love it when he was little ... Food is a Big problem ... but we are hopefully starting to combat that in 5 sleeps with our first SOS feeding session - I seriously can't wait!!!! I can only imagine what the sensation is to him, like some sort of thrill ride at a carnival.... The fear in his eyes ... No matter what you say or do ... it doesn't calm him... Anyway these are some of the little things I try every time to make the whole process easier .... Make sure you are organised and have everything handy ... the quicker the trauma is over the quicker you can get back to being calm again!! 

1. Pouring the water on..... Instead of getting him to submerge his head under the water... I try to bring the water to his head... You can fill a cup or get your child to fill a bucket with water and pour it over his own head, or invest in a hand held shower head or one of those buckets with the flexi rubber sides to mould to his head ... When he's in control of the situation it seems much more calmer!! 

2. Some kids like to go face-first. Leaning forward may not be as threatening to your child as leaning backward, since he can see where he's going. Make sure you're in the bathroom or shower, and try not to stress him out by making sure he knows not to breath in the water.

3. Games make life easier!!!  Water pistols, spray bottles, squirt toys or a safe flannel/wash cloth can do the trick of wetting and rinsing, and can be fun and much less stressful... And another tip I have found (but not used - yet) is if you live where the weather's warm and your child loves running in sprinklers, lather up and let the water play do the rest.

4. Skimp on shampoo - I use the baby wash ... it is thinner and tear free ... those thicker shampoos take forever to rinse out - The quicker you can get it out the less traumatising the experience will be...  Plus some kids with Sensory Processing Disorder don't like the strong scents of some things and will add more stress to the situation... 

5. If you can keep their hair short do it... But then if they are anything like my Boogie then a trip to the hairdressers is a whole other circus of stress!!!! As lovely as long hair is on gorgeous girls ... I bet their sensory processing would have one less challenge with a Bob or something similar...

6. A wash cloth over the forehead or a hair visor can sometimes help ... If you can find a good one in a chemist/drug store grasp it with 2 hands and don't let go ... I am trying to find a good rubber one but have only been able to buy the cheap foamy types online ... Can't wait to find a good old school one like I had growing up!! 

Well that is it ... my little thought for the day ... I seriously can't wait to do a post on our upcoming SOS appointment ... You can probably hear me squealing like a giddy little school girl waiting outside the airport for One Direction from there!!! *rolls eyes* lol

Have a great week everyone  xx 

Sunday, September 8, 2013

Jelly Bath!!!

On my quest for all things sensory.... I was fumbling around in Big W yesterday ... trying to find a replacement night light pillow pet for Boogie *sigh* ... with no luck might I add!!!  Anyway, we stumbled on Gelli Baff!! 


He was a bit unsure putting his toes in at first... But from the moment he saw the box at the shops the excitement started building ... he was ripping his clothes off before we had even put the jelly crystal stuff in the water lol 

5 mins is a LONG time for a 5 year old to wait .... So instead he jumped into the shower to wash his hair while we waited ... BIG MISTAKE!!! Because his hair ended up full of Baff Gelli anyway lol

Measurements have got to be spot on 40 litres... I used a Jug as I have a really really big bath ... Then sprinkle the step 1 gelli powder evenly ... and leave for 5 mins to start changing ... The Gelli held the warmth of the water for at least 45 mins ... 


Thickening up slowly
Sprinkling the Powder

Is it time yet?????????

I wish though that I had started it earlier in the day so he could have had some more fun ... but still recovering from his serious chest infection it was just not worth getting sick over again ... The price was about $8 for the 1 bath with no left overs... which when you think about it is a pretty expensive bath for a kid ... But totally worth it ... that was the ONLY downside to the afternoon!!!

I was actually surprised he took to it as well as he did ... obviously he was submerged in the GOO ... and was trying to wipe it off his hands onto the rest of him which was covered in goo every minute or so ... BUT ... he stayed in there!!! One sensory experience we will definitely HAVE TO repeat!!! 

On to the boring cleaning up phase ... You can supposedly put the goodbye powder in while they are in the bath ... but once it started losing its goo-ness ... He started losing interest (I know .. but there really isn't any other way to describe it lol)

So it was into the shower to clean the hair ... AGAIN!!! Anyway ... 
Hope you guys have as much fun sharing our icky sticky messy bath as we did!! xx  

Tuesday, September 3, 2013

Spring In The Air

It's here ... Yay!!!  I am not looking forward to my next power bill having to dry all these ... The saline and ventolin Nebuliser every 2 hours during the day ... the reverse cycle air con keeping the house at a good temperature for him ... and the split system in my lounge room drying all the sheets and blankets... I am looking forward to some finer weather ... to dry them outside!!

I am having to strip Boogies bed to get rid of the germs from this damn chest infection and pneumonia .. I hate it!!! I am going through a can of Glen 20 a day (feel free to sponsor us lol) Wiping every surface .. And I swear both Boogie and I are going bonkers from cabin fever from being locked down in this damn house for 3 weeks!!!

Helppppppppppppppp!! I am trying every remedy under the sun to get rid of this cough and well for lack of a better word ... snot lol  ... Have upped his vitamin intake .. added extra ones in .. and all the cold and flu mixes and remedies to boot!! I need him well .. there is 2 weddings to attend this month ... plus every other appointment we are missing heaps at the moment!!

Bleach & Disinfectant are my best friends at the moment .. I just want him to be able to get back to school .. I can't send (and wouldn't send) a sick child to school as I know the affect it has on us when other mummies send their sick kids in ... Principal should have received a lovely letter by now as well .. outlining my frustrations!! 

Can't wait for that response ... Secretly I am glad we are home this week .. (with doctors approval) As I can avoid being at school and the evils from whom ever has had the opportunity to glance upon said letter ... It scares me the effect it is going to have on my interactions with the school ... and the treatment he receives ...

Can only watch and wait right?!