Hello everyone,
We just got back this weekend from the NIH for Miranda's first treatment.
Was that ever exciting.... NOT!
I am very glad that she is on the drug now, but the testing and poking they
need to do is exhausting for her. Her veins are so bad, they used doppler,
and still didn't feel confident they could start an IV. So under sedation,
they found one in her ankle. While under they also did the biopsy in her
little hiney, audiology came in, opthamology also. We did find out that she
has mild to moderate hearing loss in both ears! I had no clue. She usually
says 2 word udderances. Maybe this explains why she can't talk.
Everyone was wonderful, Janet Jones deserves a medal! I don't think I could
ever do her job.
Karen and Seth were there also. We had some very nice conversations in the
toy room! Seth is a beautiful boy! Karen if you are reading this please let
me know how Seth did. He was still on withdraw when we left. Not sure if
your home yet. But it was wonderful to meet you and Seth!!!
We go back April 25. Then our withdraw is June 20th.
So far I really don't see any major improvement. She is happy, but it is
really hard to tell with her. Cognitively, she can't really tell us if she
feels better.
Did anyone keep their kids home from school for the first 3 months of the
treatment?? Janet had said that the kids are more suseptible with the
Anakinra and the steroids. I sent Miranda back today for the first time in 3
weeks. By 10 am I was at the school picking her up. Her teacher called and
said there were chicken pox, shingles and stomach viruses and colds on the
same floor as her class. So I don't think she will going back anytime soon.
She is also on liquid calcium, zantac and flinstone vitamins, which she will
not chew! So I will get liquid. She still thrashes around when it comes time
for her shot. But within minutes she seems to go on to something else.
It really seems so unfair that these childeren have to go through all of
this, but I am so grateful that we have wonderful doctors willing to help.
There is still the "what if" in the back of my mind. In time I am sure it
will all fall into place. I have much confindence in the NIH.
Parents who's child has already started this treatment, would you please
post your findings, from a parent's point of veiw. I would really like to
know how all the children are doing. I would like to know that we are all
together in this and that we share the same concerns and questions.
Hope all is well with everyone. I hope to hear from you all soon!!
Lots of love to all,
Sherri & Miranda