Tuesday, August 26, 2014


so much for keeping up here.  I keep thinking I need to post, I need to document this or just update why don't I but procrastination seems to be the thing at the moment.  I could make all number of excuses but that's what they would be - excuse.  5 minutes while the kids are napping should be enough, and would mean I don't need to do a bulk update...  I need to start being more accountable **slaps self**

So we have had a tumultuous time of things lately.  Nathan has had his nasal surgery just last week.  The surgeon was shocked that his nose was 100% occluded from the nostrils all the way through to the sinuses.  What should have been a 45-60 minute operation took just over 1.5 hours!!!  He has had a bit of trouble adjusting to the post surgery routine.  He needed to learn to use a gravity fed netti pot 4 times a day and he is in the middle of a painful healing period.  Hopefully he will be back to 100% soon - I can for certain say that I am glad his snoring, sniffing and apnoea moments have all but stopped!!!

Miss K is causing us a lot of stress at the moment.  Running away, lies, self harm, more suicide threats etc.  She was re-assessed by CAMHS and has been categorised priority 1 and assigned a social worker/therapist.  Through the school she has also been assigned a social worker and a behavioural specialist.  She has had a period of almost 8 weeks of non-attendance of classes without adequate explanation to anyone.  Her stories keep changing so trying to ascertain the truth is incredibly difficult - to the point we simply have given up and just take everything on face value and making judgment calls as things happen and are reported.  She has been referred to the CAMHS psychiatrist for assessment on wether we are dealing with an emerging mental illness as well as ASD.  Hopefully by the end of September we will have something more concrete to work with in relation to our eldest daughter.  It tears my heart apart to admit just how bad things have become, but not admitting or talking about this feels like we are hiding from the truth.  We need to be open and transparent for our own sakes to be able to deal with this whole journey we are on... 

Mr D has started private Occupational Therapy, Speech Therapy and Physio.  OT and Speech both agree he is definitely well into the autism spectrum.  Physio confirm our fears that the public physic here have been causing more issues than assisting his feet issues.  It looks like he will need another series of casting to try and help correct his feet - joy :/  We are about to start filling out paperwork to hopefully get hims some NDIS funding to help pay for his therapies - at the moment we are "robbing Peter to pay Paul" as the saying goes in order to accommodate his sessions.  Dom has also been listed to have his autos assessment in week 10 of this term - that's only 4 weeks away!!!  We should be given a date and time very very soon in relation to this... scary and excited to finally be getting him the help he needs!

Mr A is still happily chugging along.  He has a lovely girlfriend who is very stabilising for him and is loving school and work.  He has been getting very regular hours for work and has even been given opportunities to step into a supervisory role - a BIG thing for him :)  He also has his L's and is begging to drive all the time :)  I'm being strict in not allowing him to drive with the little kids in the car just yet.  one day soon though, he just needs a few more hours under his belt ;)

Mr W is cruising along as well.. nothing major to report from memory...  I do have to follow up his ENT referral to make sure his snoring and apnoea episodes are for the same polyps Nathan just had removed... **mental note made**

Miss A is Miss A... nothing new really...  intermittent gastro issues, piecing up bugs every time we go into town and still no real growth to report.  She is her usual petite little self.  The paediatrician has looked through all her notes and requested some new tests be run for her.  She is determined we will get a diagnosis for our little princess.  No one deserves to go through life not knowing why they are ill.  She agrees too that it is not normal for a child to have blood in their stools, to vomit and poop mucous and to have seriously fluctuating blood sugars (just the other week she dropped to 1.3 bsl with 3.6 ketones and didn't come up properly until way past midnight!!!)  So more blood tests, ruing tests and monitoring - but hopefully with some more answers!!!

I guess this brings me to Mr T... Mr T who was meant to be our last baby, absolutely healthy and perfect in each and every way to show us what raising a "normal" child is like....  Well, Mr T has thrown us a HUGE curve ball....  We only just realised last week T is not speaking.  He is not babbling like a regular baby.  He has not said one word.  Mr T has had preliminary rudimental testing and it appears he may have a significant hearing loss... in fact we have been told to expect him to be declared profoundly deaf.  I can't express just how this makes us feel.  Being deaf isn't the worst thing that can happen, it's manageable.  I have a niece and 2 nephews with hearing loss (due to connexion 26) and they are gorgeous, well adjusted functioning individuals.  They are successful and you'd not know they had hearing loss if you didn't know.  I KNOW it's not a life threatening condition.  but this wait between picking up something isn't quite right to his full hearing assessment next Wednesday is starting to play with my head.  If he is profoundly deaf as expected it means we will have some significant changes to make at home.  We are already starting to introduce some AUSLAN signs into the family to try and see if we can get him communicating a little more that way.  So far he has done pretty well with grunts, crying, screaming, pulling and poking ;)  He is such an expressive little chap and he has his own way of communicating so we hadn't picked it up until now, when he is 17 months old! So I'm a whole turmoil of emotions trying to process this on top of everything else we are dealing with at the moment.  I only want the best for Toby.  We were hoping the Dr would simply say his ears are full of wax, but they are clear and the ear drum appears healthy, so it looks like it is a more structural issue rather than something easily fixed - damn! trying to not get the horse tooooo far in front of the cart but that's difficult too when we have older children asking questions and wanting to know details we just don't know yet - try telling as Aspie that we don't know everything *augh*!! 

so I guess that's it... fun and games, nothing new in some areas, other things coming up and really kicking the feet out from under us.... we have no real choice but to keep moving forward... Time will pass and we will eventually get answers... One step at a time...  and remember to *breathe*

PS:  I've not checked spelling and probably won't read back so they won't bother me...  :P  

PPS:  yes, I probably will actually read back and edit the errors in time, but for now...  deal with them!!  :P :P

No comments:

Post a Comment