A Hard Day

Today was a hard day. In retrospect at the (almost) end of the day, it was just an eye exam, doctor's appointment, and blood work. But add to it that the patient was 4 1/2 months old, her 2 1/2 year old brother was dragged along, and they were in the company of a very tired Mommy who hasn't seen her husband in 5 days, makes for a very long day!

Clare saw the pediatric opthamalogist for the first time today. It was a long exam for Clare. The good news is that Clare's eyes look great - no signs of strabismus (common with WS) or any other eye disease. Her vision is great! Clare will follow-up annually with her opthamalogist unless a problem is noted otherwise. The bad part of the exam was that she had her eyes dilated (hated the four sets of eye drops that were put in). Then the doctor had to insert a lid speculum onto each eye so Clare's eyes would remain open during the exam. Thankfully (and I am selfishly grateful for this!), I was holding Clare so I didn't actually see the speculum on her eyes and the room was dark for most of the exam. But I know Clare didn't like it. The poor baby cried nonstop during the exam.

Then we were off to the endocrinologist. Because there have been some bumps in the road with Clare's thyroid medication, we saw a new endocrinologist today. Not because we didn't like the old one, but because the new doctor has more available office hours at our clinic, so it was easier to get Clare in right away. So we went through the initial paperwork again, and I had to fill the new doctor in on Clare's history. I like the new doctor - he was great with Clare and very thorough. He said she looks great from an endocrine standpoint and just wanted to check her thyroid and calcium levels. If the tests come back normal, then we don't have to see him for another four months. He does want blood work done every 6 weeks to monitor her levels. Fortunately, the next blood work coincides with her catheterization, so she can have that done in the hospital. The blood work was the last straw for Clare today. She was already wiped out by the time we saw the endocrinologist and was not in any mood to be examined by another doctor. Then, to add injury to insult, she had blood drawn from both arms since the phlebotomist could not get enough blood out of her first arm to do all the tests (Clare apparently has rolling veins). There was a point in the blood draw, where I told phlebotomist that if she didn't get her blood soon, I was calling it a day. Clare was extremely worked up - the worst I've ever seen and I admit I was getting on edge over it. But it was over soon, the necessary blood was taken, and I was able to nurse Clare into a peaceful sleep. I have to say again that she is such a trooper. She goes through so much, yet she can still smile at me after all this was done while she nursed.

Jamie was also a trooper during this whole day. We had a couple almost-meltdown moments. It's a long day for an energetic little boy, confined in tiny exam rooms. He was particularly upset when Clare was having her blood drawn. I think Clare's crying upset him. I explained to him that she would cry and why it was happening, but it was a lot to take. Since it took two phlebotomists to draw the blood and I was keeping Clare confined, Jamie had to stand against a wall on the other side of the room, so he wouldn't be in the way. He did not like this arrangement and there was much verbal protest from the other side of the room, but he listened and stood where he was asked. This was a day when I was blessing the Jelly Belly people - and the inventor of stickers!

So it was a hard day. I admit that at the end of a day like today, I feel like crying. Some days, I indulge myself and do cry. Today I didn't. Probably because both kids are sleeping now, I talked to Shawn on the phone who commiserated with me, and I am getting ready to take a nap myself. When I look back, I think, "It wasn't so bad. It could have been worse." Ask me how I feel tomorrow after another long day at the doctor's for Clare's echo and cardiology appointment! Luckily, at the end of tomorrow, I will have the loving support of my parents and sisters to turn to and my dad's hot tub to sink into.