Doctors' Appointments

Yesterday started my hate of doctor appts. We headed to Dr. Heafner, Elan's neurosurgeon for a follow up. We were in the waiting room for almost 2 hrs! Thankfully we chatted with several other patients who were quite encouraging. One was a couple who lost their 6 yr old daughter to leukemia years ago - they were so kind and shared how they continued on. Another couple our age were there to check their daughter's lighting bolt bottom - the same deal Finn has. His father did Proton Beam Therapy for pancreatic cancer and raves about it.

After the wait we saw Dr. Heafner - he is so kind and loving to Elan. When waiting we had a nurse look at Elan's Eye - she thought it was pink eye - so we called up our regular Pediatrician Dr. Lye. He got us in as the last patient of the day. He did the black light and saw a scrape on poor Elan's right eye. He gave us lubricant prescription (which made Erik late to meeting - I TOLD him it would take time at the pharmacy but you know guys :)) but had to follow up in am with Optometrist.... so started our day today. They said they would try and fit us in - we were there around 9 and didn't get out until 11:30 - 1 hr late for Dr. Bell our Oncologist but she knew what was going on. Erik was there already with Kid's Path (Kid's Hospice) nurse which was good for them to chat. It was the first time Erik met with her outside of the hospital.

Dr. Bell went quite well. She is amazing! I didn't mention above but she wrote a 2 page synopsis for all doctors involved in Elan's treatment which I read in Dr. Lye's cart for him. She put us in such a great position for any issues we may run into. She talked with us for over 2 hrs going over all of our questions and research we sent her. She is lucky there isn't much out there for AT/RT as we had plenty with just a bit! She went over every vitamin with us and gave us thresholds etc. She also talked with us about alternatives etc... really helped us feel better about Dr. B for sure and helped close that door more. She also was realistic with the fact we didn't get a full resection and not really having a ton of hope unless we do another surgery in the future.

So basically 4 doctors in one day is a bit much! Elan is totally wiped since missed nap yesterday and didn't get put down until after 2:15 today. He has been a bit cranky but can't blame him as i am too!

I have been getting a bit sad at night. I bet sharing a full bottle of wine isn't helping either :). I have been stuffing myself with Stacy's pita chips and hummus late at night with wine - probably why put on 5 lbs since Elan has been out of the hospital! I do wake up once a night and feel sad, as do when I first wake up in AM. I want to stay in bed but force myself out - coffee is a great driver for that!  All in all we are both feeling positive in outlook and creating a happy environment for our boys to live in.