having been carerles for the best part of two weeks I am aware I have not blogged interestingly for a while. I really could do with an extra 2 hours or so a day where noone and nothing else exists but me and the things I would like to do! I am not going to get that luxury so had better make the most of a few minutes quiet...the calm before the storm...literally it would seem as storm force winds are predicted tonight and right now my two home grown children are out playing in the sunshine in teeshirts!
Rosie is once again in the grips of seizure activity...she is constipated...although that may not be the case anymore if the last two changes are anything to go by...we may have passed that obstacle...forgive the pun it was intended. However we have resorted to her new rescue medication three times in the last 10days and it has definitely made a big difference but it is meant as a rescue not as a prophylactic drug...me thinks conversations with neuro's are on the cards...clinging to the hope that as sugessted by one wiser than me in these matters that it could just have been the constipation that had sent her off kilter. We will see. meanhwile she has developped a green runny nose so if that is going to come to somthing significant then we may have to wait a while longer.
Then waiting in the wings to cause us further concern is Jonathan. You may recall we feared he had developped an alergic reaction to his long tem nebulised antibiotic...well we stopped the nebuliser for a while and waited for the rash to subside which it did so we rang the conusltant for advice and she suggested we reintroduced it...however before we could, he presented with a rash again, on his hands and forearms....the widespread rash was also visible although not as bad as it had been...Jonathan likes to wear the silicon charity bands and I did wonder whther he had developped a reaction to them rather than the antibiotic...so we tok them off and waited a few more days for everything to resolve before restarting the drug...things seemed to settle although he appears to now have redevlopped his eczma around his wrists. We reintroduced the antibiotic two days ago and today he is covered in a red rash..it does not appear to be itchy but it is very livid. I have rung the children's ward for advice and am now awaiting their call back. Not sure what to think say or do now.
I have felt really saddened by the outpouring of disapproval that has followed from the publicity of the book When the Bough breaks. I have always hoped this book would be a comfort and reassurance to those families who have also felt unable to parent their childen with disabiities. I dont think I had ever anticipated the anger and distaste that it would stir up...I am well aware that many many people we have come across have been unable to see how someone can give up their child. Yet having winessed the love and heartache of my children's birth parents I am aware so acutely that rarely is there anything but love in the decision. We know for sure that the child in this book is loved beyond measure and has such a fantastic quality of life that she got the best end of the deal all round. The fact that her birth parents have been enabled to continue to love her and provide for her and be able to give their other children a good quality of life as well as an understanding of their sister's needs and enable all the girls to know each other can surely only be good. The words of one set of birth parents we have been involved with say a lot I think.
"We are hoping to find parents who want to care for our daughter because of who she is rather than in spite of."
We wish the families involved in this story every happiness. And for any other families facing similar decisions we would say alternative parenting can work for all involved. It may not be the answer for everyone...but then neither is continuing to care for a disabled child right for everyone...the child first and foremost.
I was going to spout forth on Church this mornng but am aware I have waffled enough! I'll leave it there.
Requesting your prayers and assuring you of mine if you are a friend I know!
I do not know what the future holds but I am glad I know who holds the future.
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2 comments:
Forgive me If i repeating something or you have already covered this but T told me that Rosie has really grown (cant wait to see!)..could this be having an effect on her, seizure activity etc
sending hugs to both her and Jonathon and you!
Yes Robyn she has grown but she is on more than the max for her weight of Epilim and nearing it for Kepra and now has Clobazam added when needed...I sincerely hope the increase is due to outside influence..constipation and maybe another URI rather than losing control per se. She is now diagnosed as intractiable so it is to be expected. if not wanted! did I mention I hate seizures?
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