Thursday, April 11, 2013

Great Eye Appointment

A couple weeks ago we had a eye appointment with Dr. Bothun and everything looked great!  He had one cell in each eye but Dr. Bothun was reassuring that this was nothing to be concerned about and is ok for someone with this eye disease.  The only thing that makes me wonder is when we saw Dr. Vehe last (Rheumatolgist) he didn't think this eye exam would mean too much because it was so close to be right after Jackson's last infusion.  He thought it would be much more telling if we schedule the next eye exam right towards when his next infusion is due to see if the 6 weeks is ok inbetween treatments or if we should go back to every 4 weeks.  Every 4 weeks makes me cringe so I hope the next eye exam is good but Jackson's eye disease was our biggest battle so far.  After his eye appointment we went to the Minnesota Children's Musuem.  He had a great time there.  Thats something I have wanted to do but never was brave enough to try and find my way to it until now 3 years later.  Afterwards we stopped in Woodbury to eat.  It was nice to spend time just the two of us.  Other than that he has been doing so much better than my last post.  He has been fairly healthy (knock on wood) lately and has not had any complaints of his shoulder or wrist hurting again!  Big relief!  So overall the last month has been great for him it almost makes me forget he even has this god awful disease!  His next IV infusion is this coming Wednesday which he is already begging me not to have to go which of course breaks my heart but it is what is best for him.  It is what makes him seem normal even though its no doubt he will be sick shortly after the treatment as always.  I have a lot people who tell me how strong I am for having to do this all the time but I am not strong.  I do what I have to do for my child.  Inside this hurts me but I have to be strong on the outside for Jackson's sake.  I have many times were I break down when I am alone, this never gets easier it just becomes a way of life.  I worry most of his future.  I have no idea what his future holds with this disease and I pray for the best.  I just want him to live a normal life!  It has been almost 3 years since Jackson was diagnosed.  It feels like longer.  I am so proud of how brave he is and everything he has overcome.  Life can be so hard sometimes and I always try to remind myself that there are much worse things and to be thankful for everything I have!