Tuesday, July 24, 2007

Neurology Check-Up

My oldest had his bi-annual neurology check-up at our local children's hospital yesterday. They check his VNS, check med levels in his blood, get height/weight and a general update of seizure control. We left home at 10:30 for our 11:30 appointment time. Just the two of us for this outing so I was looking forward to a little one-on-one time with Tuba. As we pulled in to the "ever so familiar" parking lot a wave of feelings flood me. This always happens and it's a nice, yet hard look down memory lane. I think about all the clinic visits, tests, in-house hospital stays, and worries of the past 10 years. We arrived at the hospital a bit early so we grabbed a drink and snack to have in the waiting lobby. By 12:00 our snacks were gone and we were called into the intake area. After being weighed (78 lbs.) and measured (4'8") we were told that the "Dr. is running about 90 minutes behind schedule". Oh well, at least there was only the two of us and the hospital is full of fun things for kids to do. We were given a pager so we would know when to return. We headed back to the cafeteria for some real lunch and a visit to the huge fish tank. We hit the cafeteria at peak lunch time. Finally it was our turn to pay (4 lines with about 15 people in each line). As I hand the cashier my debit card he calmly informs me that their card system is down! Yikes, "I have no cash". As I'm looking for a space to set my tray so that I can go to the cash machine.....this woman behind me says, "No, problem I'll pay, just add her meal to mine." Before I could protest, the transaction was done! I asked her if she would be eating in the area so I could get cash and re-pay her. "No, it all comes out in the cosmic wash" she tells me. I quickly look at her hospital name badge. Thanks to Caitlin in the surgical department!!!! I can't wait until I can pay this forward to someone else in need! I'll be sending her a thank you note today. After our lunch we walked down to the playroom and outdoor park area. We had a great time playing in the water feature and passing the basketball back and forth. At 1:20 we finally got a page to return for our appointment The Dr. came in at about 1:40. We had a nice catch up with the Dr. Tuba is doing great and his VNS is working fine. We've only seen a couple a seizures here and there in the last month. He probably won't need a new battery for the VNS for another year! We've seen this neurologist for the last 8 years. He told us he is moving to another local hospital. We're not sure if we will go with him or stay with the children's hospital.....tough decision. The last stop was at the lab for a blood draw. At 2:15 we were ready to go home. It was a long day but it was such a great day! I got to spend fun one-on-one time with Tuba. It was also a great day because each time we visit the hospital I'm reminded how lucky we are. My child isn't sick, isn't in pain, isn't dying. We saw many children and families who are in pain, who are sick and some who will die to soon. Each time we visit the hospital I'm reminded how blessed we are.


  1. So glad he is doing well! You and I have the exact same outlook on these days. My trips into Boston with my son who has kidney disease are trips he looks forward to. I too, love the one on one time it gives us. Our last trip was much quicker than expected as the doctor was actually early! So we spent some time exploring the city, which is a very rare occasion here. I also agree with you on these trips making me feel blessed.

    And I love the story about lunch... Pay it forward stories are so great!

  2. Oh, my dear sweet ones, whenever anyone talks about how rotten things are I think about the good that strangers do for each other. Now, here is another story for the side of wonder. I am so glad you got to have ALL this time with your dear Tuba. And yes, he has come so far and still has the ability to learn, to smile, to love. He is lucky in his family and lucky in his life.
    Thank you for sharing this day.

  3. What a wonderful day you and Tuba had. I'm thankful that he is doing so well, and happy that the VNS battery doesn't need to be replaced yet.
    Love you all!

  4. I'm so gald that your biggest guy is okay! It does sound like you had a wonderful day together! I know he is doing so well because he has such a great mom:)



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