Monday, April 5, 2010

Sami is headed to Hollywood!

We've decided to go ahead and take our sweet baby to California to see the famed Dr. Levitin. I have been talking to him off and on via phone and email since last summer. He is an incredibly kind man, his daughter had a hemangioma similar to Sami's. He is also amazing at what he does. I have incredible faith in him...that he can help our little girl.

Of course, surgery is not what we had hoped for her. We were hoping with all the meds and the steroid treatment that we would be able to avoid surgery. However, her hemangioma is still making itself at home, with not much sign of leaving. This along with the fact that she has excessive scarring from the ulceration (when her hemangioma split open from the rapid growth), and the fact that her lip is droopy now because of how large/fast it grew, makes us realize that at some point she will need to have surgery. Even if the hemangioma were to completely go away.

So, on April 14th we will head to Hollywood! I'm trying to think positively. Of course, the defensive mother in me is pissed. Why should I have to put my baby through this? There is NOTHING wrong with her! She is perhaps the most sweet and friendly baby you will ever meet. But, you all know how it is. We can't go anywhere without comments, stares or points. And, my sweet baby is just too innocent right now to know what it all means. In fact, today while we were waiting in line at Costco (churro, mmm!) a little boy in front of us kept staring at her. After a few minutes she looked up at him and just waved! Bless her little, sweet heart! Soon enough, though, she will understand what people are doing/thinking when they look at her. Because, you see, people who don't know our baby don't see her as the beautiful little creature I do. In fact, they don't see her at all. They see her hemangioma. And, she is not a hemangioma, she is an incredible little girl, with many things to see and accomplish in this world. And, this is why we have decided to go forth and see Dr. Levitin. I can only pray that one day she will know and understand that we made this decision for her...not for us.

I have always said that having a baby with a hemangioma is a long, lonely, bumpy road. But, that it is one we were meant to travel. There must be some reason that we were given this path. Sometimes I think it's so that I can teach our other children that everyone is made differently. In fact, I'm sure it's ingrained right onto their little brains. The last time PJ told me about somebody who did something or other that he thought was odd I started to say it and he said it for me "that's just how he got made, right Mom" because, it's true, this is just how Sami got made. I also hope that our hemangioma has given me a bit more patience and tolerance. Of course, after the 50th time in a day I am asked "*gasp* What happened to her!?!?" I do want to kick somebody in the head. But, I usually don't. And, sometimes I want to scream NOTHING! But, I don't do that either. I usually just explain to them that it is a birthmark. But, some times I just smile and pretend I didn't hear them. :)

On our long road of being a hemangioma family we have also made awesome heman friends. I swear, heman babies must just be the happiest little things ever! Sami even received several Christmas cards from her little friends! It's just so nice to have them to talk to when you're having a bad day...somebody who truly understands how it feels. In fact, today I was stunned speechless. I had posted on a birthmark website forum about our planned travel to CA to see Dr. L. One of the replies was from a heman family who lives down the street from his office and they offered to pick us up at the airport and drive us to our appt! They even offered to let us use a carseat and a stroller! Isn't that amazing! I am still in shock! What a wonderful thing for a complete stranger to do! Turns out they have an appt with him that same morning. We have already gotten a rental car, but I'm hoping we will be able to meet this awesome family when we are there!

Our appointment is on the 14th, so I will be sure to update how it went.


Heather said...

I am a hema mom too and am constantly amazed at how ofter people think it is a appropriate to say "What is THAT?" Thinking of you all as you gear up for your appt with Dr. Levitin! Hope it is wonderful. ~Heather

Kate said...

I will be anxious to hear about how it goes! All of these decisions are so hard, aren't they? I'll be thinking of you guys and little Sami and sending prayers and good thoughts your way for some good news with Dr. Levitin!