Update Time

WOW… its been ages since I have written, but we have had alot of stuff going on here. We have been dealing ( or not dealing) as the case my be, with the multiple diagnosis of our little girl. we hve had alot of ups and downs but we are starting to see the light at the end of the tunnel. We now have a special UV pram and w are getting our car UV tinted in the next few days. We are loking forward ot being mobile. Charlotte is enjoying going for walks though the first one freaked her out. We think she was frightened as she has not been outside the house for weeks. She is coping well now.

Health wise she has not been great. She is dangerously low on iron, ans she has a underactive thyroid. We are off to the drs tomorrow to get some more information on what to do. We are a little scared as there were makrers for other condition in her blood tests and we are awaiting more information. Fingers crossed.

We have received funding for equipement for our little girl and we have purchased her pram, some educational toys. We are also going to get a small airconditioner as the one we have just is not cooling the house cool enough for her, so we need to top up the loungeroom. We will then be putting the rest of the money in an account ot use for medical cost for her. It is a weight off our minds to have this money for this purpose. With trips to Sydney in our future this money will come in handy.

Well I need to go and cook dinner to feed my lot….

Sunny

A bad emotional day

I have just woken up, and feeling horrible. Sad, angry, tired, guilty etc . All the feelings that eat you up inside and you know are stupid feelings, but i am feeling them anyways. I have taken the HUGE step in seeing my GP as i am only averaging 2-4 hours sleep a night, as I am unable to shut down. My brain is constantly on alert, thinking of Diabetes, HED, fundraising , temperature, insulin and all the other stuff that comes with being a Mum and housewife. Im just exhausted. Now the weather is not SO hot, I am getting worried about winter as our heater in our house has 3 settings, off-hot-hotter. We have had a few bad nights in the last week with Charlotte waking up screaming. I am thinking it might be from overheating. The nights are getting cool and it is hard as I am not sure what to put her in to sleep. Tshirt and shorts is sometimes too cool to sleep in atm yet in jumpsuits she is too hot. She just seems really sensitive to temperature. It is making me so stressed trying to make her comfy. Oh, and she has decided that travelling more than 15 minutes in the car is a no go. We took her to Bathurst last week ( 35 mins away) and she cried alot even though we had the air con on. I think the sun through the window was too much for her ( direct sunlight), yet outside in her paddle pool she is happy. AAARRRR. This sucks. I also took her ot see our GP as I cant get her ear wax to move. Normal stuff isnt working. Charlotte has one ear completly blocked ( so cant hear out of it) and the onther one is not great either.

Emily also has a swimming carnival today. A diabetic mums worst nightmare. Diabetics hypo like crazy with swimming. Her normal teacher is away, her releif teacher seems to have a grip on Diabetes but is consumed with making Emily stand out from the others. I understand why she is putting bright material around Emily’s hat so she can spotted easily, but I ma not sure what making her differant is going to do to her. I am torn between yep.. keep her safe and in view, and let her be like her friends.

Add on top of all this I am missing my son who died and I am one big cry ball about to explode. I just want to stay in bed and waste my day in the internet doing stupid time wasting stuff to give my head a break, but as a Mum of 2 kids with medical issues its not going to happen.

Well its time to get up  and get the kids moving for school.

stay cool

Getting better

Well, the eye drops are not as traumatic for Charlotte as i thought they would be. She is obviously feeling the differance. She does not like it but she doesnt fight as much as i thought she would. 

Emily is even doing ok, though I still didnt get ot bed until 3am this morning…

Can anyone answer this question? Why dont kids sleep in when you have been up all night??? sigh

I am feeling really frustrated about this whole HED and diabetes thing.  i was talking to a friend about it yesterday and didn’t really realise who much it intrudes in our lives. Now  I know it does, as I am constantly doing either one, but to completly sit down and analise it was shocking… below is my normal home day ( no shopping or going out )

7.30am wake up, get kids up, eye drops, BGL

7.30-8am feed kids and get insulin pump checked, and room temp sorted

8.30am kid out the door for school, check Charlottes ears for wax build up

8.50 start car to get air con going

8.55 leave to get dave from work

9.10 home and cleaning and entertaining Charlotte

12am lunch eye drops and put charlotte down for a nap

12.15 whoohoo…coffee time

1pm Charlotte wakes up so more play and room temp control

3pm kids come home

3.15 bgl test, feed kids, get them changed, check bgl records for the day and make adjustments

4pm start dinner ( emily has to eat early to have her stable for bed time

5pm dinner finished

6pm eye drops nad put charlotte to bed

6.15 homework and bsath time

7pm dessert time and clean the kitchen

7.30pm bed time for kids

8pm…cooffeeeeeee

8.30 pm get lunches ready for following day and check bgl and make adjustments if needed

9.30 pm bgl check if needed

10.30 bgl check

11.30 bgl check if needed

repeat last 3 steps hourly if things are not right with diabetes resulting in mostly gettign ot bed by 2am

ANYONE WANNA SWAP

keep cool

PLEASE….JUST ONE THING GO RIGHT!!!!!!!

sigh

well things went from bad to worse in the last few days….

yesterday Charlotte was diagnosed with Dry eye ( those of you that dont know about ED it is a condition where the teatrs dont produce what they need to to lubricate the eye properly) and so now she is on eye drops 3 times a day…

then today, I woke up excited about the prostpect of a lovely quiet day with no kids as thursdays is meant to be charlottes day care day…. i turned up there and they had not turned on the air co… it was about 27 in the room and Char started gettting upset almost immediatly…. so i brought her home… so much for sleep

also last week one of emily’s school friends was hit by a car and died… how the hell do i help a 9yo greive….well at least her father is letting us change visitation weekends so she can go to the funeral.

i feel another cry coming on

Diabetes HELL and HED HEAVEN

Today has been for lack of a better word….CRAP….

Dave and I have had very little sleep in the next 24 hours and when when we do get to bed something else happens.Add to that some emothional stuff that has happened and it all adds up to a day from hell… and it is ALL diabetes related. But to set the stage, lets go back to 24 hours ago.

Yesterday, a very dear friend of ours lost his mother, and it has rocked us, even though we knew it was coming. Now we understand, he is going through hell, but as his friend, it is hard to know what to do. We can’t take away his pain, but we want to do something for him but can’t. So we just send one or two texts a day with the message “Hugs”..nothing more.. so he knows we are thinking if him and are here for him.

Also, we have been trying Emily’s canulas in her leg to give her tummy a rest…. NOT WORKING… they keep being knocked out. I have been through about 8 canulas in the last few days. i was called to the school 3 times today…damn diabetes devil. we have finally got her under control, after being up ALL night trying to correct her only to discover her site had failed, and since she is having it in her leg and it was under bandaides to provide protection from being knocked out we didnt realise. I whole night of being up for nothing.. no amount of corrections was going to bring her down. We ended up giving her a sub cut needle and getting her down that way. She is currently at her mates place with her mobile phone to call if she needs us. Big move for us to give her a mobile but she is wanting to go to her friends places to play after school so giving her a mobile gives her that independance without us having to give the whole diabetes lesson to a parent. We will see how it goes.

Sarah is Sarah.. going great. we are currently at Maccas having a ice cream and a play as Charlotte has not slept well and we finally got her asleep just before the kids got home from school. So a ice cream and a play at Maccas was the thing for her. She is having a ball. She just came up wanting a drink. She is growing up so fast. She is still having a few troubles in relation to her father and she is seeing a counciller next week after speaking to our GP. We will see how that goes but I forsee a few long weeks ahead of us.

Charlotte is going great atm. We have been worried about her not socialising with kids her own age with her being stuck at home and so decided to put her into care one day a week. She went yesterday, after we finaly found a centre willing to take on HED. She had a great day and is still tired, hence the late sleep today.. she is still over tired and cranky, but HED wise she is going well. Her cool vest from artic heat arrived yesterday and she loves it. She even got up this morning and wanted it on. She thinks she looks cute in it..even standing in front of the oven looking at herself in the reflection. She is SOOO cute.

well it is time I checked facebook ( yes i am addicted) and we will be heading home soon, back to reality.

keep cool

I’m back

Its been awhile since my last opst. I am not sure if it is becasue I have been lazy, unwelll, lazy or just been enjoying thequiet that only having one child at home causes, or if I am just lazy…lol

Life has been going ok here. Now the girls are home I’m back to being busy. I didn’t realise how busy I get with diabetes. Not having it for 20 days and only having HED to deal with was infinatly easier, but we are slipping back into our normal routine quickly. Charlotte is happy havign her sisters home to play with as am I as our little girl was getting cabin fever with not muc entertainment going.

We are not planning our trip to qld for the camp. Though no official dates have been mentioned we are planning a few acitvities as we have decided to make a family holiday of the trip. While we are there we may as well make the most of it.

Mum is coming with us so that will be great as well. As we will be able to introduce her to all out ED family.

I will write more tomorrow as it is dinner time here and time to get the family fed.

keep cool

Tis the Season

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)

Hi Sunny, 

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

time to reflect….yeah right

Today has been one of those weird days. I am tired but can’t sleep. It is getting to a stage where I think I need to see my GP about it. I just cannot get to sleep before 2-3am and then I am tired all day but can only sleep then for about a hour or so. I know you are all going to say that this will get better but my sanity is not wanting to play the waiting game. \

I am constantly waiting for my OT to get back to me regarding Charlottes funding for the air con and despite many emails i am not getting any replies. I then had the sec from the rooms she workd from call me asking for money. WHAT?????? The OT told me they would claim it on the care plan we have for Charlotte so we DONT have to pay for it,then she also told us we dont have to sign anything as it would all be done for us. I was then told by the sec that that was not how they do it and that I would have to pay. Now I feel like we are being held to ransom for Charlottes paperwork. The sec then also told us that the OT doesnt work there anymore….so where the F*&K is my paperwork. I am starting to think I will have to start again but this time travel to sydney to see a new OT…. all for a air con for our baby to keep her happy and not to mention ALIVE!!!!!!!!!!!!!!

 AAAARRRRRRRRRR.

well at least Emily’s levels are ok since we had her tooth pulled… …and there was $200 we could not afford….sigh

maybe i need more xmas cake

Tis the season

I have not written the last few days due to the weekend and having visitors. The weather has been borderline for Charlotte and Emly has been going great.. so not much has been happening in that dept.

As to the festive season, we are havign xmas dinner at our house, which suits me great. In the evening it is cool enough for Charlotte to enjoy a bbq. I am actually looking forward to a relaxing evening. BBQ, and mostly snack food as everyone is likely to still be full from being at other ppls houses for lunch. So a light dinner is on order.

I am STILL waiting for all the paperwork t be done for Charlottes air con ( I hate waiting for ppl) but we have our disability parking permit for Charlotte so we can get her into shopping centres quicker in the heat. I am still unsure how i feel about it but it is for her and we are entitled.

Emily’s birthday is coming up and so I have to plan for that as well. Due to beign really naughty she has lost her bday party but she is working heard to get a class party. i cant wait to seewhat we have gotten her for her bday. She will love it.

Well time to go and play games on facebook now…lol

THIS SUCKS BIG TIME

I don’t know if I am feeling this way because I am tired, infact I am past tired, or what is going on but I am on the point of crying.

Today I was looking at Charlottes hair. It is growing but breaking off  just as fast and I am not so sure she will get a full head of hair. I know for a fact that she will never have the feeling I love of soft clean fine hair that I love to feel on hair wash days. She will not know the feeling of the wind whipping her hair around and she will never have her own flowing locks. As a very big woman, the only real thing I like about myself is my hair, and Charlotte will more than likely never have that, without getting my angel a wig. I know this will sound trivial to you all but atm it is breaking my heart. Why my angel? Why my family? Why the people I love?

We are about to hit another heat wave, and we are still no closer to getting the air conditioner we NEED for Charlotte, and i am getting scared. I am scared it will take to long and she will get sick. i have seen her SOOOOOOOOO happy the last few days and I have seen her cranky, clingy and such had work and so tired in the heat and I know I have to do this again to her as people out of my control are dragging the process of funding out MUCH longer than needed.

HED SUCKS!!!!!!!!!!!!!!!!

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