..................Boston Appointment & nephrologist

The past few weeks have been awful busy with Dr appointments and the Christmas holiday, so please bare with me as this post is late. Zach had an appointment with the nephrologist on 12/16 and at that appointment he said he doesn't feel he would be a candidate for the Bisphosphonate
Therapy. I am kinda happy about that, because that would mean Zach would have to get a pic line or port for the therapy which would just be even more stress on his self image. The Dr did say his Right Kidney is the size of a 1 yr old, while the Left is quite larger and compensating for the Left. His BP was quite high 146/80 something. We are now monitoring his BP 2x a day to see if it was just anxiety or really that high which could mean more detailed kidney issue. I have bene doing the BP readings and I am getting anywhere between 124-140.

On 12/17 we had an appointment with Dr. Spencer in Boston. She said he will need surgery again because the rod is retracting in the femur and its near the growth plate. He still wasn't healed from his injury in August, but was having some skin break down and a blister on his heal so she took him out of the cast and placed him a brace that you can set a dial for the amount he can bend the knee. Its kinda hard to keep it in place because it just keeps falling down no matter how tight we put the straps. She recommended we try to schedule his surgery around a school break so we are waiting to hear of a date in February since there is winter break then. I know not a way to spend your school vacation, but he keeps missing school for all these appointments so we need to plan accordingly. Dr. Spencer said he would probably be in the hospital 5-7 days again and have a body cast on again. So very similar to his last surgery, except this time just the femur not femur & tibia. While she is in there she will do a bone graft again too.

Then we had Christmas the next week and all the festivities that go along with the wonderful holiday and on Monday 12/27 we went to the peditrician for a follow up on a evaluation from school regarding add/adhd. Dr. Anwer was very patient and sat and actually talked to us about all of this. He agreed with me, this is nothing new with him, but thought maybe he would out grow it or thought some of it was just built up "stuff" from him being so limited and going through so much. Its now affecting his school work so time to be active. No more sitting back and watching and trying to use conservative methods for him. Dr. Anwer prescribed a med for him and its only been 2 days since starting it. It is a slower acting med so it will take 2-3 weeks to get to therapeutic level. I feel awful as a mom having to do this, but we all were getting frustrated at this point and its best for all of us. I will tell you if it makes him a total different child (sedated and what not type) I will stop it immediately because thats not what we are looking to do. We just want to take the edge off for him.

I will keep everyone posted as to when the surgery will actually be. Thanks for all the well wishes we have already received. They help more than you can imagine.