Wednesday, June 22, 2011

It Went Pretty Well!

Bean had his first endocrinology appointment yesterday. He needs an endo because he is borderline hypercalcemic. Also, people with Williams syndrome (WS) often have kidney abnormalities. Bean had a "normal" renal ultrasound at the time of his diagnosis but he still needs to be monitored over time.

I took him to the hospital yesterday for his 10 am appointment. We breezed through registration but ended up waiting almost an hour for an exam room. We passed the time with snacks, books, iPhone kid apps and countless games of peek-a-boo.

When they finally paged us, I was pleasantly surprised to be greeted by the best. medical assistant. ever. Usually Bean goes nuts at the first sight of the scale. The MA did a great job of getting him through the vitals and she was even able to get a resting/calm blood pressure (more on that later).

I liked the new doctor. She has treated other WS patients. She seemed very knowledgeable but also open to my input. She, like me, is concerned about bone density given that he has been dairy free since birth and doesn't get supplements due to concerns about his calcium levels. She ordered labs to check his calcium levels among a few other things. We agreed to consider some supplementation if his levels are reasonable.

She was, however, concerned about his blood pressure. It was 129/64. Resting. That's pretty high for a child his age and size. She is suggesting that his bp be monitored more frequently than every 6 months like the cardiologist recommended. She feels we should have an ambulatory bp machine so that we can monitor him at home. This is something that I will follow up on with his diagnostic referral physician and cardiologist. 

Bean was a little fussy but overall, he handled the appointment pretty well. We will see her again in 4 months.

When we were done, we went to the lab and had to wait another half hour. Bean had had enough of the stroller and being held so I let him down to explore the waiting area. It's filled with lots of interesting games and activities. He showed off his walking skills and  greeted everyone he saw. Twice. He put on quite the show and provided much needed entertainment for everyone that was waiting for blood work. 


When they finally paged us, I was a bit anxious. The ALWAYS have a hard time with him and I hate him having to put up with them struggling to get a vein. Luck was on our side, though. The phlebotomist got it on the first stick. He cried, of course but no blown veins and we were in and out in less than five minutes. Hooray!

We should have the results by the end of the week and I am hoping that his numbers will be good enough that we can consider some new dietary/high calorie options.

Bean was so worn out after his adventure. He spent the afternoon napping and was so tired after dinner that he wasn't even interested in playing outside. He went to bed with little fight and was still sleepy today.

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Tomorrow, we continue our summer tour of Children's Hospital with a visit to the developmental pediatrician at the childhood development unit. 

5 comments:

  1. wow that is a BUSY day...I am not sure everyone gets how hard it is to keep kiddos happy waiting for doctors! sounds like a very productive day...good luck on your visit to children's hospital...you all are busy...smiles

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  2. Oh mama, I agree that sound like a very busy and stressful day. I'm glad things went relatively well for your little guy. I hope he got lots of rest and was ready to play outside again!

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  3. Fun times at the doctors offices :o) Hoping his calcium levels are normal! ... That reminds me that I need to take Kieran to get his checked -- I've been putting it off....

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  4. I remember when my own son finally had a blood draw that didn't leave everyone emotionally and physically spent. It was actually the start of something permanent. Hopefully the same is true for you.

    PS I'm not on Twitter, but I just read yours about the TP roll and I would LMAO but Fynn's here trying to nurse to sleep. What the hey?!?

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  5. Thanks everyone! I'm hoping that he continues to improve with the labs!

    Shan, you're back!!!! Yay! And, um, you need to get your butt on twitter right now so I have someone to chat with!

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