Well it has been almost 2 weeks since my last bolg. Mainly due to the whole christmas thing. Well now I have a tiny bit of time ot sit and write and that is only because the big kids have gone to thier fathers for the holidays. 20 days without diabetes. I love Emily to death, but I hate diabetes and the mind rest is SOOOOOOO welcome. Fingers crossed everything goes ok while she is away.
As for Sarah, she is not coping very well. She is still feeeling left out but we are making progress. We are making the extra extra effort to give her Mummy and Daddy time, as well as giving her a few cues to let us know she is in need of a cuddle. Also, we had Emily’s birthday this week, so on top of Mummy dealign with HED and diabetes, she felt left out due ot the party. So in comes Nanny. She went ans spent the day and night wiht Nanny, and they had a grea time cooking Emily’s birthday cake nad treats forthe party. I am so glad we were not around there as the heat from the oven would not have been good for Charlotte.
Things have been looking up for Charlotte. Despite not getting the funding we asked for through PADP, ( i will explain soon) we now have a air con for Charlotte, so she is soooooo happy now. It is like having a differant child. She is sleeping better, eating better and is just a delight to be around and she is no longer a heat monster. We have even managed to get her dry skin under control. ( yay me)
Now to the PADP thing…..( take a deep breath Sunny)
As you all know we applied for funding through a scheme called PADP ( they buy equipement for ppl with disabilities) and below is the response I got from the Occupational Theropist(sp)
I am sorry regarding the lack of contact, but I have been waiting for Enable to get back to me re your request.
It turned out that they hadn’t answered my initial request because they took the information to a special meeting to discuss it.
Because of the unusual nature of the request, because it is not disability specific equipment it is more difficult to get through.
I am still waiting for a specific advisor to get back to me, but the advisor I spoke to today said that we will need a specialist medical letter and recommendation regarding HED and the requirement of the air conditioner (known as an environmental control unit).
They also weren’t sure if it was something that could be prescribed by an OT.
The quote needs to include more info, especially regarding the size of room it will cover (they will definitely not provide for a large unit for the lounge) and the size of the room that Charlotte sleeps in.
The email is not sufficient for their requirements, they need things like ABNs and official letterhead. If you let me know the business you got the email from I can follow that up.
There was also some information on electricity rebates that they are going to get for me to pass onto you.
We also will have to prove that the use of a fan isn’t sufficient.
I didn’t expect this to be an easy process.
As soon as the other advisor has gotten back to me I will be in touch.
As you all know a air conditioner is a MUST for people with ED. Well not only were they saying a need a specalist letter ( and this would be hard as there is no specalist) they are also basically saying I have ot lick my 18 month old daughter in her room in order to keep her safe. Um, sorry but I’m not doing that. DOCS would have a feild day with that. BUt hte one that really gets me is ” We also have ot prove afan isn’t sufficient.” HEHEHE….are they joking??? A FAN…..omg.. HMMM…lets see…a fan…and what do they do????? OH THATS RIGHT….They move the air around so your body can cool itself better be evaporating your sweat. PADP…here is something….CHARLOTTE DOESNT HAVE SWEAT GLANDS.
So, after a received the above gem, I had a cry, talked to Dave’s parents, and emailed the president from ozED. While I waited for his reply, Mum and Dad ( the best inlaws, parents and nanny and poppy EVER) decided to get her air con and we would figure things out later due to a heat wave about to hit. We couldn’t leave puddy without a cooler for much longer. Well, I quickly heared from ozED and they have sent off a letter ( and those of you who know the president of ozEd will kow it was a great letter) and we will hopefully get a resolution very quickly.
Now to christmas. We are planning a quiet one. The big kids aare away, we are staying close to home to keep puddy cool and we are having Daves family over for dinner ( cold meat and salad because cooking heats the house up).
I took Charlotte out shopping this morning to pick up the last of the laybys etc and we had finally received our disabled parking card for Charlotte. Well is was about 26′ when we headed out and Charlottes threshold seems ot be around the 22′. So I used her parking toget into the shopping centre quickly nad I had a woman bail me up becasue ” You dont look like you need it”. Then she proceeded to tell me i stole the card from someone and that i was wasting the avaliable car space to to leave teh spacefor someone that needed it. I just told her that a Dr had done all the paperwork, RTA approved it and that I needed to get my daughter out of the heat. I then proceeded to the toilets and had a HUGE cry. Does this woman think I like my child having HED. Does she really think it is a condition my daughter has to enabel us to get parking at christmas time? I HATE HED. It sucks.
You all know my fear about puddy not growing hair. It consumes me some days and my little angel has not been helping this feeling of late, though she is being cute. I have shoulder lenght hair and I have been putting it in a piggy tail. Charlotte came up to me last week and handed me a hair tie and said “Hair”. I said “No puddy, no hair”. She got cranky at me for not doing her hair. I sat the hairtie on her head nad she went” AAWWW..pretty”. I lost it. I bawled. Then yesterday she was on front of the over ( as she can seeher reflection i the glass) and she had a hair tie balanced on her head and she was saying the same thing. I hate this. I love doing Emily and Sarahs hair. I love putting in plats and bows adn clips. Will I ever be able to so that with my little girl?? Who the hell knows.
Well, enough of my ramblings… Im just getting myself upset again and little Char is waking up from her nap so its back to Iggly Piggle and thomas for me.
Merry Christmas to you all