update on christian

hi everyone just thought i'd share some good news.  after 2 weeks of no desferal and just working with therapists,  we started the desferal again last week.  he is coping with it so well. i've got my little resilient boy back.

he uses breathing techniques as we put the needle in and is now moving around once the pump is on as opposed to sitting on a chair all night hunched over scared to move.

my husband and i worked with psych med for a while as well where we underwent a form of cognitive therapy.  we have changed our attitudes to it in the way we address it.  we dont ask him a million times how is feeling.  if he is uncomfortable he will tell us.  i have had to be a tad tough which i am not used to because it is not my parenting style.  when christian says i want to take it out i'll reply in a short manner' don't think about it'. whereas before i would have had a big talk with him about it and look at what other children in the world go through blah blah blah.

after 7 weeks of driving every day to the hospital (45 mins there and back) we are now ready to do it at home.  for now we are only doing it 5 night a week, as he only has 1.5 units of blood.


oh and another thing- i have now become the person who does the needle.  he didn't want dad to do it and whether i liked it or not i had to do it to show him it was not that big a deal.  i'm still nervous about it but i probably do not show it.  in fact this ordeal probably made me a little too tough and i distance myself from the small things  that dont really matter in the scheme of things.

i get a little frustrated because try as they might people do not understand.  i ahve been trying to work, go to the hospital everyday, look after christian and zac, make sure the house domestics are done.  i am so tired!  maybe when we start at home this week, things will be alittle more relaxed.

thank you all for your support.  its on this site that i know people understand and can give me advice to help me get through.  i haven't given up on the thought of exjade though.  i'm taking one day at a time for now.

vic

Hi Vic

i am so happy for you. How you and your husband handled the situation was terrific. Consulting psych was a wise thing to do. We as parents sometimes think we can handle things because we know our children, but the truth is that having an expert's opinion usually has a positive impact on our children and us. Because we are inside the problem we can't think objectively, at this time comes the role of a psych. You were right vic when you had your son's mental care the first priority.

you made an excellent job, and i am sure that Christian will be much better and better. You are a wonderful parent
Manal

Vic,
     I am so glad things are going better. You did a great job of handling a really tough situation. You have been under so much stress. Could your pharmacy premix the desferal? That's how mine was, and it seems like it would make it somewhat easier. Anything that can be less stressful for you right now would be helpful. You are wonderful parents.  Jean

Hi Vic,
I'm so happy for you and especially Christian.



You have done a great job and I'm sure that life will be easy from now on. It is always the first steps that are the hardest ones. After that I'm sure Christian will now understand the situation better and know that his parents are actually on his side and have no intention to hurt him. He will know that it is for his own good and start to comply with the therapy.

I hope Exjade gets to you soon and make life even easier.

Take care, Peace!

That's great! news. I do hope everything will do fine from on..... keep us posted always! Take care and God bless!

Hi Vic,
Its great to hear christian is back to the little boy he was!!! It sounds like you & your husband are great parents who do everything in your power to help christian.I commend you as i know it must be really tough! keep strong.Best wishes
 

I'm very happy to hear Christian is coping better now. 

Fantastic news