Well, here I go.
The idea behind this blog started with a really really bad week in our house. Now we have alot of bad weeks here but this has been a shocker.
But first, lets step back in time a little.
In may of 2005, I took my then 5 1/2 y0 daughter Emily to the Dr AGAIN. She was having recurring UTI’s and it was getting beyond a joke. My Dr gave her antibiotics, again, and told me to bring her back in 2 weeks again.
We finished the course of medication and she was going great. I expected the Dr to tell me that she was fine. There ws NO way I ever expected what was about to happen.
Emily was diagnosed with type 1 diabetes. My world collapsed. I was in shock.
Dave and I had only been dating a few weeks when this happened. I thought for sure he would take the first train out of town. But he was my lifeline. As it turned out his brother has it as well. He already knew a lot of what i was going to face and he was there the whole way though the diagnosis.
Dave pulled me together and we started living diabetes. It was tough, so tough in fact that in April 2006 we moved to Orange to be closer to family to help us. Poor little Sarah was getting pulled out of bed at all hours to get dragged to the hospital if Emily got sick ( which was often ). Dave’s parents were our saviours, providing a shoulder to cry on and the extra attention to Sarah we were unable to give sometimes with long hospital stays the norm.
One week after moving Dave and I were married. Now there is a whole other story, maybe for another time.
Life was going great. Our little family of 4 was wonderful. Other than the diabetes devil rearing its ugly head from time to time life was cruisy.
Then along came Charlotte. After the longest pregnancy in history, and 6 months bedridden on 5/6/08 out beautiful baby girl arrived.
The first thing that Dave’s Mum and I looked at were her nails, as Dave has deformed nails and we were concerned about Charlotte’s. She had her Daddy’s nails. I was crestfallen as I know the problems Dave has with them sometimes, and I was also worried about her going to school and girls being cruel.
After she started crawling, she started knocking the nails and they would bleed. I was getting more and more concerned about these nails, and I was also waiting not so patiently for her hair ( or lack there of ) to grow.
Dave, the kids and I moved to a new house to accomodate our growing family.
Not long after we moved I was talking to Dave’s Mum ( whom I call Mum) about Charlotte’s nails. She told me that Dave was diagnosed ” with something” when he was little, and that he had a sweat test, but she couldn’t remember what it was called. I thought about this for a few days and finally asked her if she would mind if I investigated this. I thought that if I found out the name of this then I might be able to find some way of stopping Charlotte from knocking her nails off, or hopefully finding a way of making it less noticable.
We were lucky in the fact that Dave’s pediatrician is still practicing and after a few calls we were told it was called ectodermal dysplaysia. So I hit google and I was frightened by what I saw. Deformed teeth, sparse hair, and the fact that these Ed people didnt sweat. I got more and more concerned by what I read.
I googled support groups and found ozED. This was the lifeline I was looking for. After a few emails to the president, then a few phone calls, and a lot of books sent to us, it all started to fall into place. We joined the group, and went to our first campherance. WOW…WOW. What a experience it was.
The first night at the camp was really emotionally hard for me. I saw Charlotte as just that. Charlotte. But seeing her playing with other ED kids shocked me. She looked like them. ALOT. And I was scared. Andrew, the president of ozED told me it can be a bit in your face so I went somewhere quiet and had a cry, got it out of my system and went back to get as much info as I could.
After the camp, and talking to almost everyone, I got 3 things out of the camp.
1. I learnt enough about ED to go and see out Dr’s to get a formal diagnosis for Charlotte so we could get some things in place.
2. I learnt that my kids have no fear. I mean, c’mon, a 20 metre high swing and high ropes.
3. We gained a WHOLE new family.Our ozED family.
When we returned we took what info we had to see our GP. She read what we had, did some reasearch and came to the same conclusion we all did. Charlotte has HED. Hypohydrotic Ectodermal Displaysia. Even though I knew this long before getting it formally diagnosed, it hit me very hard. I had a cry, again.
With summer on us, this brings us back to now.
Diagnosis for Charlotte was only a few weeks ago.
With the heat we have found Charlotte to be very particullar about some things. She stands in front of the cooler, and says HOT. So we turn it on. She LOVES her spray bottle and she seems to be happiest about 22′c. We are told that kids generally can cope better as they get older.
About a week ago I was talking to Mum about how were were going to cope with summer and Charlotte. I was telling her that my nightmare would be it being 30′c, Emily getting really sick, Dave being at work and Mum being sick or unable to come to help.
I REALLY NEED TO LEARN TO SHUT MY MOUTH.
Yep, not 3 days later it happened. Emily got really sick, high level of ketones, Dave was working until 12pm, 30′c day and Mum was sick.
AAAAARRRRRRRRR
So after praying that Emily would be ok until lunch time and putting in place a few things I had learnt over the years of diabetes, I got Dave home, left him with Charlotte and rushed Emily to the hospital. What started as a need for help to get her under control turned into a 4 day hospitalisation and alot of juggling 3 kids……
Mum is on the mend, Emily is home, Dave has the next few days of work, Sarah has her new Wii game and Charlotte has her paddle pool to cool off.
Lets see where this journey takes us…………….
