Hi Again-upsetting report

Over the weekend Ava had fun seeing lots of her family who had not met her yet. Honestly I was feeling a little awkward about bringing her because I didn't know if everyone knew what to expect when they saw her or if they would be caught off guard. I was more than a little comforted by everyone letting me know that they had been reading the blog to check up on our growing family! We went to Eddie's cousins graduation openhouse and to my cousin Jeremy's wedding. We took both Nicholas and Ava to the openhouse and just Ava to the wedding. Nicholas had fun going swimming in his Aunt Mary Joe's pool during the openhouse. We spent Father's Day with both sides of the family and had a relaxing day.

Ava has been doing well, she is starting to make cute little noises and coo, I am just waiting for her to smile at me on purpose. This is something I am just curious about since I am not sure if it will take her any longer than other children to do things like that. Nicholas is doing great with her. He gives her lots of hugs still throughout the week but is otherwise not super interested or jealous. Bedtime is when he wants my attention most and we seem to have that worked out. Yesterday while taking a walk with their Aunt Michelle I got a call from the genetics lab with results from her genetic testing (they are making sure if there are any underlying syndromes or abnormalities that may have contributed to the other things going on (hemangioma, cataract, vascular area in her brain, tortuous/long aorta) since they may not be related to the DWM diagnosis. She will be meeting with us soon to test our blood because she found a duplication on part of one X chromosome and wants to see if either of us has the same duplication. She says that this will not impact Ava in any way differently than what we already are expecting for her development and that she actually hopes one of us does have the same duplication becuase that makes it insignificant since we don't have any of the same health problems.




This week was not supposed to be a big week but it was. Any of you who saw her recently saw the "owwies" on her cheek and nose. I called the office about these and was told by a nurse that it didn't sound like a big deal and that I didn't need to come in and have them rechecked so while I was on campus I didn't stop in. Later I went to Ava's eye doctor, she was very concerned about how her face was looking compared to the last time we visited and asked if it was okay if she called that same clinic bacck and reiterated how badly it was looking so they would change their mind and see her. I did end up going in but our doctor was out so we saw another one in the office. He told me that it was not Necrotic(or dying) as the eye doctor had suspected and gave me advice to do nothing with these sores and to just let them heal on their own. I was slightly beside myself and asked if he thought the plastic surgeon could also take a look since he could use laser treatment if he thought it would help. I got in soon and this doctor also told me not to worry and gave me the same advice. Not to put anything on it, no pain meds, and just to wait it out.

I started to wonder about this advice because nothing was happeneig after 2 weeks or more to indicate that it was healing. I took matters into my own hands and tried to remember what dermatology had told me when she first got the sore on her ear-before it ulcerated. So I put some vaseline on her face and to my horror, the scab started coming off to leave an open wound underneath. I called dermatology right away and asked if I could email some pictures and get some advice. They were great and one resident even helped me out over the phone all weekend and made sure to get Ava right in on Monday. I met with a different laser surgeon, not our plastic surgion, who told me it was good to have the scab come off and to continue to get it as greasy with vaseline as possible over the next few days since the laser could not penetrate through scabs and then she could have surgery. He also said there would be a much higher chance of scarring since it took so long for me to get to him.

This news was really upsetting because I am not a doctor and instead of finally figuring this out on our own, we should have already been referred to him by our other 2 specialists that work on her face and weren't. We are lucky that we by chance ended up calling. Since then I saw one of those doctors and did express some concerns about this situation. She had her laser treatment yesterday and it was not as bad as I thought it would be and she is doing fine. Doctor said to keep her really greasy with vaseline until we see him again next month. So when you see her expect her to be shiny:) Laser Surgery can take up to 3 or even more treatments to heal these ulcerations so we have to be patient. I can't wait for her night time and morning routine to not include a horribly painful cleaning of open wounds. She screams her little head off and that is really hard to take every day. Even though babies are extremely resilient and don't have a very long memory, I'm still looking forward to having a pain free little girl and now I feel like there is light at the end of that tunnel. This afternoon Early On will be coming over to check her out-they send therapists over and it's free of charge to help with her development and help us learn as we go when dealing with any developmental differences she may have from other children. They will be checking to see if she is meeting the current developmental milestones for a 1-2 month old baby and giving advice on how to help things along and what to be expecting soon. I think they will have an evaluator and a physical therapist coming today.