Our little Ella Bell is still on the Propranolol and since she has gained weight, her dosage has been increased. The doctors were pleased when they saw her this week, but are still a little concerned about how her eye is still a little swollen at the top of the eye lid. The mass under her lid has not completely gone away, but has obviously decreased greatly.
They started planting the seed of taking her off of the medicine because it will get to a point where the medicine is just not doing anything anymore. We met with each of her doctors separately and then together and one said he thought we should quit at 8 months of age and the other one thought at 1 year. They are honest in telling us that they are just flying blind on this because it is still a new procedure, but they want to make sure it has done all it could for Ella.
It was mentioned that hemangiomas typically stop growing after 1 year of age, so that might be a good time to stop. After that point, we will either look at other options of reducing the hemangiomas, if needed, or just let them diminish on their own. Of course, this could take 5-7 years, but if it is not affecting her eye anymore, then it should be okay. We will just cross that bridge when we get there.
We are still patching her good eye 5 hours a week to make sure her vision is still developing and I think that is going well. She doesn't mind the patch anymore because a) she is used to it and b) she can see out her bad eye now so it isn't so awful for her anymore.
All in all, I feel like she is progressing well, but we are still keeping a close watch on her to make sure the mass does not grow back. We will go back to the doctors in 6 weeks for another update.
Side note...Ms. Ella is a little star! After our hour long wait in the waiting room, she was quite ancy and squirmy and overall tired of being there. But once we got back in the patient room, she put on a show...for the nurses (who affectionately call her the Gerber baby everytime we are there, because of her cheeks), the doctors and the host of residents who all came in to see the hemangioma/Propranolol baby! She smiled, talked, squealed, jumped up and down in my lap, and didn't even cry when they tried to flip her lid up and see under it. She may be up on stage one day...loves to entertain!
Here are pictures from our past visits that the staff photographer has taken every time we have gone. Some are a little graphic, but you can see just how bad her eye really was and now how far we have come. Thanks be to God for leading us to these doctors who could administer this medicine to help her!!
This was taken on her first visit on 9/2/09...she was almost 2 months old.
This was taken on our visit about 3 weeks after starting the medicine. (10/7/09)
This was on the next visit on 11/11/09...quite a difference, huh?
And of course, you can look at my previous posts to see how she looks now. It seems that the progress is slowing down now, but as long as it is still working, I am okay with that!
3 comments:
Oh wow Jessica! She is doing GREAT. She is an absolutel doll. Those cheeks, I just want to eat them. =)
i am so glad the treatment is working for her. she is such a doll... having a baby who is well-behaved at the doctor's is a blessing too. (my son was great, but my daughter is a nightmare...) keep up the good work, you're a great mama to that beautiful little girl!
I'm so happy and excited for you guys! It truly is a blessing!
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