Tuesday, July 23, 2013

July 23, 2013

Note: Alexis is 3 1/2 years old

I figured that I better write, not only to keep notes for myself but to update those following this blog and Lexi's journey. As I said previously I felt like our journey was almost over but now I'm bummed because I feel like it's just beginning. :(

Alexis went to see Dr. Slyvester last week. Dr. S is her ophthalmologist at Children's. She was the one she saw first and had her go for her very first MRI at like 4 months old. And that was when we found out that her "bumpy" was a hemangioma. We had to go see her to make sure that her "bumpy" was not impairing her vision. Thank God it is not. Dr. S did such a great job, she felt Lexi's "bumpy" and said she did feel a "ridge" there and she measured the area. It is larger width wise than when she saw it last. Now she has not seen Lexi in almost two years but still it should be smaller not larger. I feel like her "bumpy" is growing. I truly do. I have felt this way for over a year now and other than the last visit at dermatology I feel like the two visits before that within this year were a waste of time. I told the doctor at each visit I was afraid it was growing again and she would just say a few things and tell us to continue what we were doing and "see you in 6 months." You see the "norm" is that hemangiomas are not growing at this age (Lexi is 3 now) But do things always follow the "norm" or the "protocol?" No. I truly am hoping that I am wrong and it is only fatty tissues left behind from the hemangioma because if it is still growing or if anything "vascular" is in there still then we are talking about a surgery that is a little more complicated than one for just fatty tissues. Dr. S feels as though she needs another MRI, something I've been saying for a year now. But she wants to wait to see what the doctor at the vascular center says. If Lexi has an MRI she will have to be sedated again and they are trying to avoid that, so they are hoping they can see what they need to see with an ultrasound instead. If needed Dr. S will introduce us to a team of eye surgeons, that is if the surgeon at the Vascular center does not feel comfortable doing it because it is near the eye. So here's the plan:

She goes to the Childrens Hospital Vascular Center on Sept. 17th. She will have her first consultation with the doctor there and have an ultrasound. And then we go from there.

So now you see why I feel like our journey is just beginning again.

Do I still believe in the propanolol treatment? Yes. It stopped (or stunted) the growth and at the time Lexi needed that to happen. When she went into Childrens at 4/ 5 months old she needed something done or I think we would have a bigger problem on our hands. However, I think a year ago more should have been done regarding her "bumpy." Maybe that's partially my fault for not pushing the issue -who knows but I relied on the doctor at dermatology that we were seeing to know what she was talking about. Again, maybe that's my own fault, I don't know.

I will update again when I can.

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