We began the day with a VERY early 8:00 dermatologist appointment at Dell Children's. This early appointment means that my alarm went off at 5:30 (which hasn't happened in a very long time). The purpose of the appointment was twofold. First, we needed to monitor our daughter's blood pressure again to see if increasing the Propranalol caused it to drop any lower than it already was. Second, he wanted to monitor the results from the steroid injections last Friday.
I anticipated heavy rush-hour traffic on the way to the appointment, but because of spring break, we actually got there 20 minutes early. (For those of you who know me well...this NEVER happens!) I thought I'd use a few minutes sitting in the parking garage to be productive and make a list of things I needed to get done today. While digging in the armrest of the car for a piece of blank paper to jot down a few notes, I found Jason's sunglasses that have been missing for over a month. This was our first cause for celebration!
When we were called back into the exam room for our appointment, the nurse prepared the fancy new blood-pressure machine that supposedly gives much more accurate readings than their old machine. At first we had no luck. We tried to find our daughter's blood pressure twice on each arm, but the blood pressure cuff would inflate with air and then give an error message after it deflated. In the back of my mind I was wondering if her blood pressure was so low that the machine was unable to read it. I was scared! But then, the nurse tried finding the blood pressure on our daughter's leg. Not only did the blood pressure register, but it was WELL in the range of normal. This means that we can leave the Propranalol dosage where it is for now and will possibly be able to increase it again in the near future. Another cause for celebration!
Then, it was time to visit with the doctor. He asked me lots of questions and gave our daughter a thorough examination of her face and neck where she received the steroid injections just five days ago. He agrees with us that the results are amazing. Her eye is now open about 75% of the way 90% of the time. This is an improvement from being open only about 25% of the way 25% of the time. Being able to use the eye is critical in our daughter developing vision in that eye. As he examined her cheek and back of her neck, he noticed that these tumors are much smaller and softer. The color of the birthmark is also much lighter in several places. More celebrating!
Because her blood pressure looks good and the steroid injections are working, we are able to cut the oral steroid dosage in half. The oral steroid is the medication which compromises our daughter's immune system and has some pretty strong side-effects. Cutting this medication in half is a cause for even more celebrating!
From our daughter's very first appointment with her pediatrician the first day she was home from the hospital, we have been scheduling appointments, experiencing medical tests and procedures, experimenting with medication combinations, and monitoring the effects. With each appointment I felt like we were hearing, "Well, that didn't work the way we hoped it would...let's try something else!" Today was different. We heard, "This is EXACTLY what we wanted to see!" We're on the right track and are truly celebrating good news.
The most exciting reason for celebration occurred as I was walking out of the doctor's office when the dermatologist said, "I'll see you in a month!"
This is the best news we've heard in a long time. We can hardly wait to be with you all this weekend and see these great results for ourselves. God has certainly heard the cries of our heart.
ReplyDeleteIt's so nice when all of the appointments start to ease off. Eventually, you'll wonder how you ever got to all those appointments and it will all seem like someone else's troubles. We had therapy twice a week, a helmet appointment once a week, and a smattering of neurosurgery check-ups, cardiologist appointments, and urologist appointments; not to mention the regular old pediatrician check-ups. Just power through and it will all seem like an absurd memory soon!
ReplyDeleteSo great to hear, God is Good! Hopefully we can celebrate with y'all soon! -Robert
ReplyDeleteOh Jennifer! What good news!
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