Henry's Status

Yesterday was our visit with the Doctor, and a chemo day. We had talked to the Doctors before about Henry's back, four of his vertabrae are fractured or splintering either from the LCH or the steroids or both. They didn't think it would be a problem then, but after talking to them about how much pain Henry seems to be in they prescribed Methadone. A long lasting pain reliever, which we give to him at night and they said should help him sleep through the night. We didn't sleep entirely through the night last night, but he did sleep longer than usual. He is still pretty constipated, too much adult food that's hard for his body to digest. So we are working on blending his food up for him so he can have what we eat and still be able to digest it.
We have one week to try and fatten him up or they will put the feeding tube back in his nose. I'm frantically trying to get him some weight gain. He's had ice cream, pudding, chocolate, anything that will give him some weight.
They are also increasing his mp6 (the at home chemo that he gets MWF) so that his body might be able to go three weeks between his Vinblastine chemo. Every time he gets the Vinblastine he has to do a steroid blast as well, for five days, and since the steroids are already destroying his bones they really think it would be best for him to go three weeks. However we are still waiting to see if he's really responding to this treatment plan. His rash is a bit better in the diaper area but spreading in small amounts onto the trunk of his body again. Besides which they think that all the fevers could just be signs of the LCH flaring, or attacking the body. We are still holding out hope that this regiment of chemo works, otherwise we go to harsher chemo and he's already being adversly affected by this regiment. Only time will tell.
The good news in all of this is that hopefully if he has been in chronic pain the Methadone will help him. We are being scheduled to see the Orthopedic doctors to get their opinion on the vertabrae fractures and if he feels they will heal on their own, we will be able to start physical therapy with Henry. He's lost so much strength through this all, he's stopped rolling over or standing much or reaching for toys. So we'll get to work on that and hopefully get him moving around a little more. It's hard to believe he's almost one. Time really has stopped here and I forget how old he's getting and treat him like he's still 4 or 5 months old. Crazy!
It's a bit overwhelming I know and sometimes I just get a bit stressed out, but the Doctors are doing all they can and hopefully this will all work out for him. The Lord is truely blessing us and watching over us. We have so much to be greatful for and hope for. Thank you for all the prayers. We love you all and miss home.

Much Love
Lisa