I am feeling so incredibly ripped off and frustrated. In the middle of the year I applied for a holiday through a foundation for our family due to Denver's cranio and me feeling that we all needed a break and some time together without the cranio leading our lives. We were blessed to receive a week from the 18th to the 26th of Dec. It was a really big thing for me to leave my family at Christmas and go away but it was our opportunity to have our holiday and recharge and get some time together. I had wonderful images of us having a great relaxing time at the beach just hanging out not a care in the world. Well apparently that's not in store for us. My husband gets sick the day before when we are meant to be packing, so I continue to pack holding back tears in the hope that he will be better the next day. Day of leaving hubby is doing OK so we decide to go for it. We make the long drive have a wonderful evening on the beach and it all looks perfect, just what i wanted and just what we needed. Until the next morning Denver wakes up sick and spends the whole day sick getting worse as it goes on. He seems to settle a bit at the night until he develops a fever. We think OK a fever that's fine lets see how he is in the morning. He is worse really high fevers wont eat or drink cant keep any medicine down, we try everything but he slowly deteriorates as the day goes. So by dinner time i know that he is getting severally dehydrated and its time to get medical advice. He is also suffering headaches which i am sure is normal when dehydrated but when your child has cranio a headache is never a normal headache. So we end up spending a number of hours in the local hospital re hydrating Denver. WTF. I just wanted a nice relaxing holiday but instead we are dealing with this shit. I am praying so hard that no one else gets unwell, I don't know if i could take it. I just want to have a nice relaxing fucking time. I didn't think it was to much to ask a week without Dr's and hospitals and where do we end up on the 2nd day the fucking hospital. I feel so incredibly ripped off. I feel so sorry for Denver how much does one kid have to go through in a year. Do we have to try out every hospital we go near? I am so incredibly tired more exhausted than when i came and on high alert. this was our chance as a family to relax together we were giving a house for a week so we could, how often do you get that opportunity. Well that's my big whinge for the day. When is it our turn to relax and not see a Dr for more than 3 weeks, when is it our turn to be 'normal'.

i hate reminders

This morning i laid in bed thinking of all the things i hoped to do today. I then logged into face book to see how everyone was going and found out that one of our cranio kids had died. There is a huge support network for cranio parents on face book, we share the ups and the downs, the hopes and the fears, we understand each others anxiety and frustrations. But today we are sharing more than that we are sharing grief that one of our beautiful babies didn't survive cranio. Kaitlyn would have been two at the end of this month but she didn't make it. Her family have done everything they could they have been strong but now they have been crushed. I think all of us other cranio mums have gone into a bit of disbelief, we all know that this could be us, we could be the ones to have lost a child or may lose one to cranio. It is not a far thing to live with. Today i am flat, i have a deep sadness in my heart, i feel gutted, i feel hopeless, i feel lost. Even though this family and i have never meet in person we know each other, we all go through so much together.
I also have had moments of anger, why don't more Dr's know about cranio, why aren't parents listened to when they say something is wrong, why isn't there more support and understanding, why is cranio not talked about, for fuck sake it is one in two thousands births. Dr's and the public need to be better educated. One baby is too many to lose to this cranio.
A family now will have to go on without their baby girl and a support community will feel the sorrow along side of them and pray that we never have to feel their pain.
Rest now baby Kaitlyn.

We are having a holiday from the hospital...

It feels like so long since we have been at the hospital, but in reality it hasn't been that long, but it does feel like a sense of freedom not to be have to constantly go there. Our last visit was with the main surgeon and it went well, better than what i thought it would. Denver's wound is now healing beautifully no sign of infection or anything else other than a normal healing wound. Anthony the surgeon is happy, happy, happy. He is happy that Denver now appears to be healing well, happy with the shape of his head, happy with how Denver appears to be going. The only concern is that Denver was unable to do his last lot of neuro tests because he was too restless and not able to concentrate, we will try to re-test at a later date. But that aside he is happy with how it is all going. Anthony is going to look further into the cause of the infection as he had never had any where he had to go back in until this year and now he has had two, so he is wondering what is going on weather the stitches have changed in the way they are made or some thing like that. We got to look at the before and the after Ct's of Denver's head and i just found it fascinating the difference. In the pre-surgery one it was just out there for all to see that the shape of his head was just not right, too long, stuck  out in some places, skinny in other spots just wrong altogether. The post-op ct shows such a different shape head you can see where the major changes have been but it was also disturbing to look and see because it also looked like a jig saw puzzle. You could see exactly what they had done to Denver and what he went through. It also helped me understand what i was feeling when i feel his head i could put the two and two together to get a fuller picture. So yeah, we get a little break and maybe just may be i can relax for a tiny moment. (maybe)
Denver had started orientation at school a big thing for us as his future has been so uncertain and we weren't sure whether he would be able to go next year or not. So to think that he will be able to go like we had always planned will be a relief to us. I have some lingering doubts in my head about how he will go and whether he will be up for it. There are little things that he struggles . with and are harder for him due to his cranio. Luckily we go to our small local school where my other four kids have gone so the school knows us well and Denver's teacher next year has taught 3 of my kids and knows Denver's history and all about him, so its nice not to have explain it to them and have them already know all about it and  the journey that Denver and we as a family have been on.
We are going on a family holiday this Christmas, my wish that i have had all year is coming true. We get to go away as a family and pretend that cranio never existed.

Denver all ready to try out school.

P.S. I love hearing from all you cranio mums out there and knowing that i am not alone, that you are all here supporting me and Denver.