We had to go up on the Sirolimus. It was .2ml/once day. Now he's taking .4ml/once day. Not seeing any results yet.
One of the hardest things in life is to see a loved one's health deteriorate, especially for the caretaker! As his skin thickens and gets puffy, it's pretty hard to deal with emotionally. The thickening is from the GVHD, the puffiness is from his organs not working effectively to get rid of the toxins. His body does not feel like the same lovely body I used to cuddle with. My heart breaks pretty deeply.
We go onward, even though we take a few steps backwards because every step ahead requires more strength, so we grow stronger in the process too.
Thank you for reading this...
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5 comments:
Dear Aimee,
Just reading what you are describing is so heartbreaking, I can only imagine what you are going through with sweet David. I hope that God holds your heart in his hands,helps it to heal and gives it strength.
You have kept the faith so long Aimee. Hang in there, hope and faith is what we have at times like this.
As always, David is in my prayers for healing.
With love,
Sumathi
I want to run right over and give you a hug, but I have a cold, so here comes a cyber hug....
Love to you and all those lovely children. : )
I feel the same way.
Grandma Susan
Hi Aimee
Congratulations on the new baby, hes adorable! So sorry to hear about David, he is such a brave boy and certainly been an inspiration to us.
Oliver is back in hospital with chronic tummy pain, xrays and ultrasounds are normal but he cannot keep even water down. Praying its not gut GVHD, however we have had many conflicting opinions as to how it presents.
Our thoughts are with youand especially David a fantastic little boy and a hero.
Deb
x
Hi Aimee,
Just caught up on everything that has been going on with you and David. I'm so sorry to hear that he is not well still with the GVHD and I pray this new drug works for you. Congrats on your new baby so cute. As for the person who said your blog was neg, that is not right I read your blog and it helps me sometimes with new info and it is far from neg only filling us mothers and your family and friends with what is new with little David. That person is rude and remember we think that you are a very natural and beautiful mother to David that is there for him everstep of the way for him and your other children too. Hats off to you Aimee not many mothers could have gone through what you have and still going through and be there for us mothers too. Keep that faith you are going to get through this with your beautiful boy David.
With Love
Susan and Zac and James
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