Because of the snow, all of Rebekah's appointments this week have been cancelled. So, we have not seen her cardiologist to have an echo to see if the oxygen therapy is helping her high pressures. As of tonight, it was reported that cardiology will open at noon tomorrow. I am planning to call as soon as they are open to reschedule our missed appointment.
I see you pointing that camera at me!
Last week Rebekah had an audiologist appointment to recheck her hearing. If you read the last post, you may remember that I was going to suggest to the audiologist that we stop checking Rebekah's hearing every six months. However, I learned at Thursday's appointment that the two types of tests that Rebekah have had are different. The "long" test that Rebekah passed tested her auditory nerves. We know that Rebekah's auditory nerves are fine. The short test, however, tests the middle ear; basically, it measures the vibration of the eardrum and how well Rebekah actually receives sound into her ear. So even though Rebekah's auditory nerves are fine, she is not receiving sound into her ear as well as she could. Rebekah's loss is in the slight to mild range right now, with her right ear testing very close to the mild/moderate range. If Rebekah falls into the mild/moderate range, she will be fitted for hearing aids for at least a few years. Rebekah will continue to have her hearing tested every six months.
Daddy's first dance
Rebekah also had a gastroenterology appointment on Thursday last week. The week of Christmas we had reduced Rebekah's overnight feeds from 40 mL's an hour to 35 mL's an hour. Rebekah maintained her weight even with the reduction in feeds, so we were given the green light to reduce by another 5 mL's an hour. It doesn't sound like much, but every time we drop 5 mL's, Rebekah gets 2 ounces less of formula overnight. It has already made a big difference in her appetite, and we are seeing Rebekah eat much more than she was a month ago. The plan is to continue to check Rebekah's weight once a month and reduce her feeds by 5 mL's each month that she maintains her weight or gains. Our GI doctor said a conservative weight gain for Rebekah should be 4-5 ounces each month. So as long as she meets that goal, we continue to drop feeds. We are hoping that Rebekah will be off, or very close to being off, her overnight feeds by her birthday. We will take it one step at a time, though, and go as slowly as Rebekah needs to.
Rebekah loved sledding!
This week Rebekah missed her endocrinology and cardiology appointments, as well as two of her therapies. While it has been nice to have a break from the constant busy schedule, I am a little nervous about fitting in those two appointments into the next two weeks, which were already busy enough! It will work out, though. It always does. :)
After a while, we gave up sledding and just sat in the snow.
Rebekah kept patting the snow with her mittens.
If you would like to see more pictures of the boys and Rebekah playing in the snow, click here to head over to our family blog. We really enjoyed our snow days!
Yes, Rebekah really is in there somewhere! :)
Thank you all for your prayers for Rebekah. So far she has remained well, and we are thankful for that! Please continue to pray that Rebekah stays well and that her pressures will be better when she has her next echocardiogram.
Nancy
2 comments:
She is just so sweet! The tape I use for Owen's oxygen is called tender grips by salter labs. Apria carries them and I use about 4 pair a month. They are fantastic. No redness. They stick well for about a week and you can take the cannula off and on if you want. They pretty much fall off when it's time to change them. I hope you can track some down...they are really great!
I love the pictures of Rebecca in the snow. She just looks like a kid. I loved it when I was able to look at Oliver and start seeing just a kid.
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