Avoidance. That is what I have been doing and doing well. I keep wanting to meaning write an update on Denver and his cranio but if i write it I have to think about it and feel it. So avoidance has been my strategy. It hasn't really worked. So were are we. I just read my last post and went wow I was hurting deep. So from that appointment we went back to the cranio surgeon and had an appointment he then referred us to the neurosurgeon as everything that he deals with looks great, so we wait. In the mean time we have our eye/brain pressure test done and they are happy there hasn't been any change in his last two appointments so they are happy for us not to go back for 12 months. So where are we now. Last Friday we had our appointment with the cranio surgeon for his 2 year post op appointment and he is very happy with the shape of Denver's head, it has grown half a centimetre which they say is great and Denver's head is solid. Denver is given the go ahead that he is now allowed to play football, they would like him to wear one of the footy helmets. Denver is grinning ear to ear he has waited and waited to hear those words 'can play football'. Me not so sure I feel that its a risk to take but the Dr assures me that Denver's head is as hard if not harder then everyone else his age. I bring up the headaches again and the problems with memory and some of his learning issues. He is furious that we haven't see the neurosurgeon yet as it has been 8 months since he refereed us, he makes an urgent referral. Then he very casually says oh well he probably will have a learning disability with all that has happened to his brain, so its probably just a learning disability. Then he just continues on with what ever he talks about...I cant hear anything else i am stuck on the words learning disability. We leave the appointment, I am shocked, I am stunned. I get our appointment for the neurosurgeon, our urgent appointment and its for the 22nd May. I go through the day a bit dazed and stunned, lost on where to turn to. What I find really hard is that everyone else forgets about his appointments and therefore forgets to call or message and ask how he went, are we OK? My mum is the only one who calls but unfortunately I haven't had a chance to talk to Matt yet and I am surrounded by my kids, I cant talk we would need to talk at a different time. I wish I had time to talk to her, I wish I could. But its not the right time. I talk to Matt 2 days later its the first time we are alone and OK to talk. He just nods and looks at me, gets angry about how it was so casually said about that he probably has a learning disability. He soon moves on and like Denver he focus on the fact that Deni can now play footy, its been Matt's dream for his son to be like all the other boys and play footy, soon every thing else is forgotten and the focus is footy. Its Matt's coping strategy, its how he copes, he doesn't realise that his coping strategy means I am left alone to face the reality and deal with it all on my own, he has the footy I have every thing else. I'm not angry about it anymore I have accepted that we cope differently but its lonely and hard for me.
Denver is still complains of headaches and is really tired, I now keep him at home for a day every couple of weeks as he is just so tired. I take him for a blood test to make sure his iron and vit are OK, they are, so its not that. Damn iron we can fix easily, but its not.
Yesterday Denver described to me that his head hurts at night and that it feels like his bones are moving around bashing into each other and his brain and it makes it hurt. What do you say to that? I just reassure him, talk about how that must feel awful and hug him and love him oh so much. It breaks my heart, he should be free from pain.
Every night we do a reader and Matt did it with him on Wednesday night and I heard Denver's struggle with his reading, letters, sounds, memory from a different angle. I normally do his reader but hearing it from afar i can hear the frustration, I can see him start to fade as his brain comes under pressure, I know he wants it over it wears him out. The next day I call the teacher we need to talk. I go in, we discuss his lack of progress,his fatigue, his struggle, he is not moving forward with his learning, I know it and she knows it. Denver is becoming aware that he isn't advancing like his friends and he wants to so badly. I am disappointed that his teacher hasn't called me in sooner. I impress to her that I want to get it sorted out, get on top of it, I don't want Denver to hate school or learning. She tells me he has been put into reading recovery program and says we can see how he goes with that and maybe then look at getting him assessed. I agree. I explain what the Dr had said and where we are. Assessed I don't really know what that means or what it entails but it sounds and feels like it will be the right step. I am trying not to be angry that Dr's didn't listen to me when he was a baby, the damage to his brain could and should have been avoided. I don't want to feel anger, i know that if I let it start it will consume me and make me bitter, I don't want that. But its hard, their failure to listen and believe the mum has brought us here and will affect us for the rest of our lives. I am yet to get a moment with Matt to tell him about the talk with the teacher he will just nod and carry on. That's OK, I know now that that's him and I am me and we just cope differently and need different things to cope. Me I'm still trying to find the right way, I am always drawn to the ocean when I need to calm the inside. Last night i dreamt of the ocean and just staring out into it, then I dreamt of being able to crawl into a ball on some ones couch and have them stroke my hair and tell me they are there for me and it will be OK.
This morning I got to send Denver off to school, say to him, I Love you, he replies I love you more, I say I Love you more than infinity, he says you cant cause i love you more than infinity and I love you more.
And those words calm my soul.
Hi, I am a mom of a child with craniosynostosis also! I discovered your blog looking for other moms, and I found you. I feel I need to reach out to you.
ReplyDelete1--You are not alone! There are many, many, of us. Craniosynostosis is one of the top ten birth defects, affecting 1 in 2500 births. So please know that you are not alone.
2--Please go to the doctor and get some antidepressants for yourself. If you are already on them, get them adjusted. It is normal to feel bad about our cranio children, but it is not normal to feel bad a lot of the time. My meds help me tremendously, keep me from crying all the time, help me see through the fog of the pain and be able to make decisions on how best to help my child, and my whole family. It is all taken one step at a time, and I can figure out what each step is and push myself to take those steps with my meds, much, much easier than without them. I don't do a perfect job, but I know that I am doing the best that I can, and I know I could not do that without my meds. I feel your pain, and I how it feels, and it is real. It also is not helpful, and does not get us where we need to be. Do that for you AND your family!
3--Headaches are NOT normal with cranio synostosis. Denver needs to see his neuro doctor right away. That needs fixed, and immediately. There could be pressure on his brain, fluid building up, any number of things going on. Pain is not good, it is a sign that something is wrong, that is why we have nerves that give us pain, so we know that something needs paid attention to and corrected. There is no need to worry, it can and WILL be fixed. If you don't get answers right away, go to another doctor ASAP!
4--Many children with CS have learning disaiblities. It is unfortunate that your doctor said it the way he did, that was not professional at all. But know it may not have anythign to do with when the surgery was done. My daughter had surgery at 6 months old. She is now 13. She has memory issues. Just like Denver, she can learn something and know it well, and the next day not know it. That is okay, she needs it taught to her many times, 2,5, maybe even 10 times, but then she remembers it! Lack of long-term membery is a learning disability. But she is smart, so that helps. I would not wait for the school do to the 'assessment' that the teacher suggested. I would request that they do that ASAP. That is a series of tests, not medical tests, but educational tests, to find out exactly what the learning disability is. When they know what it is, they can then provide extra help in a way that can help Denver learn better. A learning disability is not the end of the world. I know it feels like it when you first hear those words. He may have average or high IQ, but it may just be a bit harder for him to learn. With special teachers who are trained in exactly how he best learns, he can still learn and still do anything he wants to in life. The first step, though, is the assessment. Request that in writing ASAP! My daughter has (from the book they use called Diagnostic and Statistical Manual of Mental Disorders, 4th edition, Text
Revision (DSM IV-TR))
“315.9 Learning Disorder Not Otherwise Specified." That is where a memory issue falls.
5--That is enough for now, I hope you are happy that someone has found you! I am happy to ahve found you. We are going along the same path, loving the children who need us! You are not alone, you need to get out of that funk you are in and get some meds to help you do it, find out what the headaches are about ASAP, and get the school assessment done ASAP!! Let me know how you feel about all this, I am happy to listen. You can email me directly at marlishanson@sbcglobal.net if you like.