Hello everyone.

     Well, how is everyone doing?   Zachary and I just returned from his 12th month visit at the NIH this past week-end.  Everything went well and most importantly he has been stable this past year.  Thank God.  Two years prior to the Anakinra, Zach was rapidly losing his vision and hearing, besides all the other problems he has had in the past.  I was having a very difficult time wondering how I was going to be able to cope with more disabilities.  Nothing is worse than seeing your own child suffer and I wasn't sure I was going to have the right answers, when he would ask, Will I be totally blind and deaf? We have had difficult times in the past, but how much more could this disease take from him before he would give up.  That's when I would have a difficult time.  As long as his spirits are good, then I can cope with anything.  He had always been very optimistic.  The fact that his blood counts are normal for the first time in his life and everything at this time seems to be stable is such a blessing.

     When Dr. Goldbach-Mansky saw him this visit, she told him that he could probably give himself his own injections in his stomach.  I would have to of course draw up the Anakinra, since his vision is poor and his right hand would not be able to assist very well(due to his stroke).  Well, when Zach found out is was her birthday he definitely wanted to surprise her. He told her  he gave his first injection to himself on her birthday, she was so proud of him.  She is such a wonderful person.  The entire staff I have been impressed with.  We, of course miss Janet Jones and Natalie, but Anna and Scott are great.

     Zach wanted to say Hello to some of his buddies that he met at the NIH, so HELLO to Matt, Lee, Alex and Jamaal.  Hope you are are doing well.

 

                                                                                                   Take Care,

                                                                                                    Jan and Zach