Since June 4th...

Okay, so we have had a few appointments since the 4th. Lets see, we met with the doctor about her hemangioma and he assured me that even though we thought things were looking worse, medically it was doing better. I thought when it was bright pink/red it looked healthier than now, at a grayish purpley blue shade. Also there are areas that seem to be breaking down and we are scared that they will open up and aren't sure what to expect if that happens. We are really happy to report that he thinks it looks like she is responding really well to the steroids.

We met with a plastic surgeon on the 5th about possible laser surgery on her ear and future reconstructive surgery (after the ulceration heals). He told us that laser treatment is not a good option for her right now because it can cause swelling and further irritate the wound. Also we asked what his thoughts are about the little sore spots on her face that seem to be scabbing and he told us not to worry about that, that it would heal on it's own better than it would if we treated it with laser. Just to let it heal. Now we are in the same situation...just waiting for our poor girl's ear to heal. We were told to meet again in a week because he wants to keep close tabs on it to ensure no infection begins.

On the 9th we took Ava in to her pediatrician because she was sick and found out she had a cold.

The 11th was the re-check by the plastic surgeon and he thinks she is healing okay and we should stay the course. He also informed us of how great it is that we got her in to the dermatologist, the blood (Hematology/Coagulation Disorders) specialist and himself so early. He said he could tell it would have grown rapidly without the steroids. I guess her nose most likely would have swelled beyond what plastic surgery could help and on the spots where the hemangioma is up in her hair and on the side and back of her head the hair could have fallen out or thinned significantly, and changed to a different lighter color. These are just two of the many things that her case would have been like if we had not started her steroids at less than 3 weeks old. Most patients don't get in to see these specialists until 3 months or older.

On the same day I went to have her hearing tested and her brainwaves showed a response in both ears... Now we know she can hear and see just fine.

Today, the 12th, I went in with her for a cranial ultrasound and a re-check by the neurosurgeon. This was my favorite appointment. The ultrasound technician was so great and she was so positive and friendly that she made my day better and then when we met with the neurosurgeon we also had good news. He said that her head's growth was more on target now than he thought from the last measurment and that the fluid in her brain does not look like it will reach true hydrocephalus. There is fluid in the ventricle in the back which will need a shunt at some point to help her developmentally, but he has been checking the other ventricles for fluid growth which would indicate imminent hydrocephalus and they are still not measuring in a way that concerns him. He also said that usually if it's going to happen it happens by now, but not to completely rule it out (He always makes sure not to misguide us as far as ruling things out). He said he was very encouraged and pleased with the results from today and was all smiles. Of course I was too!! I'm really happy with this weeks appointments but wish I didn't have so many. By the way, Nicholas is doing really well and has recovered from the Walking Pneumonia that he had and Ava's cold is finally slowing down:) As of now, we only have one appointment next week aside from the home visit by Early On's Physical Therapist and Consultant!!! YIPPIE!

We still have to get a good one of all 4 of us:)
Daddy got a good shot of us...usually it's me behind the camera
~Let the Sun shine in~
An updated close up of the hemangioma changes, these are the sores I was asking the plastic surgeon about, but I will ask at Hematology too(they are the ones that specialize in working with Hemangiomas.)