The Beginning.

I have thought about writing this blog for awhile as I have found it very hard to find information about craniosynostosis (cranio) and having an older than normal child affected by it. Denver (Deni) is now four but our story with cranio started years ago. This blog is for other parents and for me there's a lot that often goes around in my head and some times you just can't find the right person to talk to or you don't know how to say it and some times you don't want to say it. My thoughts and worries with Denver often keep me awake at night so I am also hoping that by getting them out of my head it will help. I hope to be able to be really honest with what i right, I think it's the only way to be. Sometimes I bet I will be laughing, crying or just stunned. So here goes.

The Beginning!!!

I remember this day like it was yesterday I am giving Deni a bath with his sisters it's fun because he has just started sitting up and he can now sit and splash in the bath he is about 7 months old. I wash the girls hair and then i wet Deni's head he turns and I seee that at the back of his head near the bottom of the skull kind of sticks out, it's weird not smooth like the others. I wash his hair and try to push that feeling in my tummy aside.

A few days later we are swimming with family and friends and i mention it as his hair is wet again they all notice the funny lumpy thing at the back of his head when i mention it but no one seems concerned every ones head is different it's just the shape of his head. Oh ok, but it still doesn't sit right, but it must just be me no one else is worried,

When he has his next dr's appionment with the gp i mention his head they have a feel and measure his head na it's fine just his shape.

When Deni is7 & 9 months old he is admitted to the royal childrens hospital with really bad gastro and needs medical help to keep hydrated. He is small for his age so once we leave we are giving appionments for the outpatients clinic to keep a watch on his weight. I am not worried about his weight he eats really well, gains weight just not as fast as others and all my kids are small. He is diagnosed with faliure to thrive (bullshit) and we now need to attend every 3-6 months. Deni has every test under the sun they want to figure out why his weight gain is so slow, nothing shows up. He is 12 months old.  At every appionment I ask the dr's we see ( we only see the same one for about 2 visits in a row) can you just look at his head and i explain my concern they all look and feel no it seems fine just the shape of his head. Ok, but I still ask every time, the feeling in my stomach just won't go away, some thing's just not right. Some one dares to call my an over reactive mum. yep that went down like a ton of bricks. At each visit they check his motor skills and his speech and that all his mile stones are on target, they are. We continue on this way for ages. His head to me is so different to my other kids it's not round and the shape of his face is different. Now i know that all kids look different but I don't know. His lump at the back of his head was more pronunced and his fore head was also more pronunced. His head was really long and skinny. Hats could be a problem. People did notice the shape of his head and sometimes you would get a comment on it. Deni started talking quite early ( I think he had too being the youngest of 5) and people always commented on how well he spoke and that he sounded much older than what he was and that he could put sentences together and tell great stories and use great big words. Deni and I have a great time together I always tell people he is the perfect last child.

We start to notice in June this year that some times Deni's language doesn't sound just right. His behaviour is changing. We put it dwn to him being the baby of the family and he is spoilt. We head off to his four year old health check up through the local dr's we are a few months early but told thats fine. His motor skills are great his weight is still under, he won't be the tallest kid in the block and his langauge is fine. yeh. I feel relieved it must just be us it must be cause he is the baby of the family. For the first time i think yep it's me may-be I am over reacting.

17th September 2010

We have what I hope is my last app. at the royal childrens Denver will be four at the end of this month and we are hoping this is it. We see a different dr again and Deni has gained nearlly 400grams in 5 months which is good for him and he now weight 13.56 kg. The Dr i see id lovely and we chat and it turns out she knows my gp. I ask her about deni's head she has a look and a feel and says its with in the normal range for size and it is long and thin I think it's ok but there is another dr here who has worked in the skull department so i will get her to double check before you leave. The other dr comes in I love her she is great. We have a chat abput what I have noticed with deni's head and she has a feel. She just casually says to me lets just get a skull x-ray to make sure every thing is fine then you can relax about it. Great. We head up stairs for an skull x-ray and denver loves it. (his grandpa takes x-rays so he thinks that this is fantastic) he smells for the camera and chats away to evrey one, he had a ball. We leave and I breathe a sigh of relief it's over we don't have to go back.

8th October 2010

I recieve a letter in the mail, deni had been offically discharged from the out patients at the kids hospital. I can't believe how happy I am. I jump up and down with joy and relief finally we don't have to worry about it any more every thing is fine. I tell every one.

11th October 2010

I am recovering from gastro and am home alone when the phone rings. It is the dr we saw at the childrens, Some thing showed up on deni's skull x-ray thats not quite right. I hear the wold craniosynostosis. We think the front suture is fused. I don't hear any thing else she talks to me and I don't hear any thing I get off the phone. What???? What just happened??????????? What did she say????????? How do you spell that????????? I make my way to the computer and google skulls and kids and up pop hese web sites for cranio I start looking holy fuck!!!!!!! Thats not what she says. Na can't be evrey thing is fine it's just the shape of his head. I don't want this answer. But all the kids on this web site are babies they all got picked up when they were babies. Denis four. No. what?????????
What do I do??? I need to ring Katy (my little sister) she will fix it she will tell me it's ok, she will make it better. Were the fuck is her number why the hell is she in kenya, what is the special number i have to ring. Katy. Katy answers and i burst into tears I am sobbbing I can't stop. Katy can barely understand me. Her phones drops out. She rings back I can hear the tears in her voice. If she's crying what does that mean, Katy says she will ask around she is a nurse and she will see what she can find out. She manages to calm me down. Shit the kids and hubby come home I must be ok. I go to my room they leave me alone for fear of being vomited on. I talk to matt, he is quite and calm. He says we will just wait and see it can't be that bad other wise they would have picked it up earlier. It's fine don't worry.
I worry and I don't sleep I search the internet for more answers but I don't like what i see. I think I know which type he has. I think by reading and looking at the pictures it's his sag. suture that is fused. Thats good only one. I spend the day crying on and off i am in shock, i don't know what to do.

12th October 2010

I an angry so angry. How could they not have known. What the fuck. I am angry. No one listened. No one heard me. No one listened. Why?? Why?? Why him??? I am like a bear with a sore head luckly on am on my own for most of the day. I find myself pacing the house. I am so angry.
I get a letter from the hospital, Denevr has an app.

13th October 2010

Why??? Why???? Why???
Why didn't they listen?
Why didn't they hear me?
Why didn't I do some thing??
Why didn't I ask some one else?
Why didn't I push harder?
Why did I ignore my gut?
I am his mother I should be able to protect him.
I have failed.
How can this happen to him he is my baby?
It's my fault. What could I have done to change this?
I have failed him.

14th October 2010

I start to tell family and my closest friends. It's so hard for me to talk about. I don't want to talk about it but they need to know. Every one is asking questions but I don't know the answers. I want this all to stop. I have had enough. I want to sleep. I want to look at Denver and not see the funny shape of his head. I want to see him as I saw him before, my perfect last child not the child I failed and couldn't protect. I am sorry Denver I am so sorry.