What a day! meltdown

Yesterday Danika and Darren took Panda the Pug to the vet, Panda has a sore eye. All was going well until it was time for the vet to take Pandas temp, poor Danika totaly lost it shouting "dont put that needle in my dogs bum", dad stop her........lol Poor Darren he was trying to hold the dog on the stainless steel table and hold onto Danika as she started to grab at the vet.....insert laughing mum here! Today I picked Danika up from school today and she is really excited she is having her delayed birthday party at Kidz Bizz Sunday. We had a play on the swings (good calming activity) she was supper happy we went and got an icecream from the deli on the way home. We got home and thats were it all changed, Darren is sitting on the couch feeding Angus nothing wrong there! Danika starts screaming and crying, trying to run out the door throwing everything she can get her hands on, this went on for about 10min before I finaly found out what was wrong......Darren had his hair cut today very very short a number 1, and Danika finaly said "I dont like his head I can see his brains".............oh Danika you are so cute she meant his skull. Meltdowns............are part of the life of a child with ASD there alone one with Fetal Alcohol Syndrome and ADHD (I feel the need to again point out I am not Danika's birth mum) The only good part about a meltdown, and I do mean the ONLY thing is that Danika has no connection to the event after it has happened.

School Photos

Wow today is school photo day that may not seem like a big deal to some but to us it is. Danika will be just one of the class today when she stands proudly next to her FRIENDS, this year our beautiful Miss D will not be wearing her helmet nor will she have a nasal gastric tube down her nose......... She will just be one of the sea of green and yellow children awaiting there turn. We will always treasure her first school photo, as it is just that "her first" but it holds so many bad memories that I dont think I will ever shake. Danika had just gone back to school this time last year after being in Status epilepticus. She spent 7 days in ICU and weeks on the ward recovering and re learning old skills, how to eat, walk and talk, then weeks at home getting strong enought to face school, then it was photo time. Isint it strange that one thing can trigger a chain event, I dont think about last June very often we live in the now, but the silly school photos have made me realize how close she came to not making it and how quick life can change. So bad mum for losing my patience with her last night when she wouldnt let me dry her hair after her shower, but thats the way it goes!! Insert judgment here........ But we dont treat her any different she is Danika full stop and I will be cross with her and proud of her and all the other feelings a mum has because she is my daughter and I love her.

GettIng back to normal!

Danika went back to gymnastics last night, she wasn't sure at first it's been a few weeks off but off she went and didn't miss a beat. She didn't do bar work as her tummy is still a bit sore. It was really nice to have so many people came up and say " hi Danika" we missed you! Some people I didn't even know. How nice thanks all at

going well

Danika is back at school and mum or dad are going up a few times a day to "burp" her peg (just letting the air out)until a nurse from the Hobart hospital can teach a staff member how to do it. Danika likes her new Peg but is not keen on sleeping with a bag connected over night, it was a wonder she didnt float in the air last night it was so puffed up with air, she actually came into our room and said "my bag needs burping" oh bless her cotten socks. Saw the surgen yesterday Mr Ee and he is happy with her from a surgical side so no more Mr Ee woohoo, we also saw Dr Michelle and it still remains a mystery as to why Danika has a distended tummy and "the" vomit.... More appoinments came in the post this week for the craniofacial team in Melbourne, one for the 19th September to see an eye craniofacial/surgeon and then on the 25th to see the Neuosurgeon ahhh two trips to Melbourne a week apart, they are all going out of their way to get her in. Dr Michelle told us yesterday she is listed as an emergency case so she can have it done sooner, great thanks guys but im not sure im ready for that, the idea of a new face is not something I am finding easy to come to terms with as I have stated before I love the face she has now! If she didnt need the surgery we woudlnt be doing it, in fact I have tried to talk the doctors out of doing it. It seems in conceivable to me to change anything on my beautiful daughters face, no point in trying to even think why cant everyone see the same perfect face I see? judgment is every where those people staring at her in the shops I see you!! she sees you but luckly she doesnt understand your raised eyebrow, for now anyway......

 

 photos of Danika turning 6 in the Royal Hobart Hospital

 Birthday toast

 the rocket mum ordered and the great cake the nursing staff ordered

presents on the end of the bed

Dont add pressure.......please

School are on the phone worried about what they have to do for Danika when she goes back, come on guys we can work it out, training orginized tick, mum on standbuy tick danika able to help with her needs tick. lets just do it!

hospital again!

Monday the 25th we went to the hospital for a day procedure to have the long term PEG inserted. well we ended up staying for 6 days. The surgeon can out from Danika's op and told me all went well but how long has she had the distended stomach? My reply was since January along with loose poo and some pain and vomiting. He wanted to know why I hadn't said anything, well I have ive been working with her peadeatrition to try to solve the problem. so off to the ward we went and test after test, one very bad night in the mix were poor Danika acutally vomited poo, yep I said poo, doctors came running this is a medical emergency. More test and an unhappy mum later and Danika is back in the operation room. They still have no answer as to what is wrong or even how she managed to vomit poo.

Mum and dad and all the family and our very special friends are all saddened that Danika will have to spend her 6th birthday in hospital, 3 out of the last 6 is just so not fair!

Saturday the 30th June Danika wakes up to a decorated hospital bed, presents wrapped and nurses every where wishing her a happy birthday, the wonderful staff ordered her a cake and we had a party in the playroom, Claire brought in a box of party supplys donated by her friends at coles in Kingston and all the kids in the Peads ward all came in for a party. Thank you all it was wonderful, even one of Danika's teachers came in, all the kids had a great time with the rocket cake and the one the nurses ordered. But the best news came a little later.....

Mr E came in and told us we could go home!! woohoo yippee and THANK YOU I get to learn a few more nursing skills to help Danika's care and with a list of instructions off we go....

What a lovely night at home, Danika looked so beautiful all snug in her own bed and we all loved having her home. I found it hard to sleep lol as it wasnt the hard thin fold out bed i've slepted in for the last 5 nights....

I want to thank my friends for your support and kindness, your seemingly small offers of help and visits meant the world to both myself and Darren. It made all the difference.

Back to the hospital this week with outpatient appointments but Danika is doing ok.

She is trying to prove her point that she really is one of a kind!!!! Danika we get it.....