sclerotherapy
Cali's growth is rebounding quickly. Even though we now know it's a lymphangioma, we don't have any quick solutions. The surgeon shot down surgery due to 1) the high risk of damaging her facial nerves, and 2) the lymphangioma's thickness and depth.
The only solution, then, is sclerotherapy. It's an injection into the lymphangioma that supposedly makes it shrink.
We are busting our tails trying to get her in, but it's really hard. We are hounding doctors, driving all over creation (we drove over 100 miles today to 2 children's hospitals) and still no results.
And like I said, the lymphangioma is growing bigger hour by hour. I can't stand to watch it grow huge like before without any solution. Please keep Cali in your thoughts and prayers.
The only solution, then, is sclerotherapy. It's an injection into the lymphangioma that supposedly makes it shrink.
We are busting our tails trying to get her in, but it's really hard. We are hounding doctors, driving all over creation (we drove over 100 miles today to 2 children's hospitals) and still no results.
And like I said, the lymphangioma is growing bigger hour by hour. I can't stand to watch it grow huge like before without any solution. Please keep Cali in your thoughts and prayers.
posted by emily & david at
9:05 PM
2 Comments:
David and Emily, This is probably about the hardest thing you've had to do being a patient advocate to your own child. I've done it with Ryan and it was ugly, exhausting, and just hard, but it worked and we got the answers to the puzzle/problem. Sounds like you are finding it to be the same at this point. Keep it up, don't take any prisoners, and be persistent. Fortunately none of these health care professionals have to be long term friends, they just need to help your child. No one cares about our kids like we do and Cali is lucky to have you both fighting for a solution for her. We are very sorry it's so difficult and painful for her and for you both. Keep up your great work. There is an answer out there. If we can be of help or San Diego can be a research place, remember that our offer still stands to stay with us.
We will keep Cali in our prayers. Hang in there and keep working diligently. That's why Heavenly Father trusted her in your care - He knew you would be the best for her.
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