harry's battle with craniosynostosis
Because of this he is having to travel to adelaide women's and children's hospital to receive specialised treatment from the australian cranio facial unit. This comes at a very high financial cost. We have just returned from ten days of appointments with various specialists to assess his case. we are now returning in a week to undergo more invasive testing including an angiogram and oximitrey study. This is the second of what will be many trips to receive the treatment he needs to be able to lead a normal life. these visits will continue well past his teenage years.
These visits include visits with a ear nose and throat specialist, ophthalmologist, neuro surgeon, cranio facial surgeon, speech therapist, neuro psychologist, respiratory specialist, pediatrician, and social worker. These visits are proving very costly and financially it is hard, but it is the only way to ensure he gets the treatment he requires to lead a normal life.
His speech has improved, being able to communicate more has eases some frustration and has also brought to light how he feels, giving him the ability to tell us when he's not feeling good or if something hurts. This has made managing his pain and moods much easier.
He has been seizure free for 5 months after a change in medication. This had been a much needed relief for both Harry and myself!!
He is still watched closely by his specialists and will be recessed in the coming weeks to try and make some ground on his other issues especially pressure and behaviour/development.
Surgery sadly can still not be preformed even after exhausting every option I still hold hope that one day he will be able to have it a and live a completely normal pain free life, but for now we aim to give him the best life possible given the circumstances.
The AVM's in his brain still worry me constantly and like any parent I dread the possible outcome that can occur because of them.
Bottom line for me is as long as Harry is happy I'm happy, and I will continue to strive to give him the very best life I possibly can
Therapy has been going exceptionally well with harry finally walking in the last two weeks, both his physio and occupational therapist are very happy with how he is doing. Speech has been challenging and has been little progress if anything Harry is resisting it with all his mite and still flat refusing to cooperate with it. But hopefully with some perseverance we will move forward soon and be able to gain some form of communication with him.
The seizures which started at the start of March have unfortunately continued with five days being the longest break he has got from them. A few of them have been scary and upsetting but for the most part Harry just sleeps it off and gets on with life. A EEG preformed last week should hopefully point to something that can be done to manage them better. A neurologist appointment scheduled for the 1st should also provide some answers.
unfortunately yesterday I was reminded how cruel and judgemental strangers can be whilst waiting at the airport. Comments such as "what's wrong with his head?" and "it looks terrible and I should have it fixed" are unhelpful, hurtful and go to show just how little awareness there is out there when it comes to Cranisynostosis. I could only hope that by sharing what Harry goes through I could change how the world views deformities and all that goes along with them. But sadly there will always be people like this. So instead I wish for tolerance from all people of the differences each other faces in various forms, be it physically, mentally or medically.
His last month has been full of ups and downs, some moments I have been left asking why Harry? Why does the he, the little boy who loves life more than anyone I've met get such a raw deal? But he just laughs and smiles and reminds me that life's for living not dwelling on our misfortunes.
He has managed to gain weight and grow 1.5cm in the last two months which is a small miracle in itself after months of nothing :) he's also attending speech and occupational therapy weekly and is showing small but encouraging steps forward. He has unfortunatly been experiencing seizures again, and had had a rough two weeks with them. But with a EEG being organised hopefully some answers will be provided and his little body can get a well deserved break.
On a final note a huge thank you to moora newsagency for your amazing ongoing support. Lauren camplin and jasmine porter for all the effort and hard work you put in on a daily basis. Windmill roadhouse at regans ford for your compassion and care you are both amazingly beautiful people. Moora speedway for your phenomenal and heartwarming contribution and all the effort that went into it!!!! Moora lions club, moora rotary club and all the individuals and business's in the dandaragan and moora communities that have gone above and beyond.
Hi Aleix I would love for you to contact me as my son has had this done .I know you may be busy with your family so much to do feel free to contact me via facebook this is my current profile thats my son that had the same operation .
Hi aleix and family I saw your story in today's paper and just wanted to let you know we have a daughter (now 35 ) who was also born with craniosynosis and who had to have the surgery to rebuild her skull etc. We live in Perth and Jaqui our daughter also lives here ( she works at Curtin University ) - so if we can help in any way (you want to call / talk to someone / need accommodation in Perth etc ) please don't hesitate to give me a call or email me (firstname.lastname@example.org) . Happy to share our experiences and let you see some pre and post pictures ! Best of luck Carol Kelly
Hi I,m from Moora Lions Club. We would like to donate but can only send a cheque. Could you please send your address. Thanks Eve Newport