Princess RoRo

With Princess's type of Birthmark (Port wine Stain) there is a chance that one could have Sturge Weber Syndrome.

When you have Sturge Weber you have a Birthmark on your Brain as well as your face. We were referred to a Neurologist and he wanted Her to have a MRI to be absolutely sure she did not have a Birthmark on her Brain. If one has the Birthmark on your Brain it can cause seizures.

Well This past Tuesday was her apt downtown at a Children's Hospital for a MRI. She could not have any Breast Milk past 3:00 am. So I set my alarm clock and woke her up to feed her at 2:45.

My Husband was the one to take her to her apt. We had no one to watch the other 2 Boys and since we Both could not be there. He was the Man for the job. I am so not good in these situations. He is much better.

My Husband and my Daughter left the house at 5:45 am to get to the Hospital by their 7 am apt. I was texting my Husband the entire time.

At 9:00 am He texted me the "He could use a beer" of coarse he did not have one just just how stressed it was for the Hospital to give her the Anesthesia . I guess it took many tried for them to get a good vein.

When everything was said and done my Husband had to give her a Bottle before they could leave..(good thing she takes the bottle like a champ)

When She came home the Hospital said that She would Probably sleep for about 5 hours strait.

She Pretty much did. I just Held her as Much as I could and was so Happy that She was Home and that in a few short Days we would have closure on weather or not She had Sturge Weber Syndrome.

Wednesday came and went and we still had not herd the Results, so on Thursday Morning I called the Neurologist Nurse and left Her a message basically saying that If it was your Daughter you would want to know as soon as possible. Wouldn't ya know they called us back with in 20 Min and told us the GREAT news that She does Not have her Birthmark on her Brain!

I am eternally Grateful for this answered Prayer and Now we can begin laser treatments to diminish Princess RoRo's Birthmark...Her 1st Laser surgery is scheduled for March 11 and Both my Husband and I will be there with Her!

Port Wine stain Birthmark

Being a Mom is so difficult sometimes. You love your Children more than they will ever know and you have to take care of them every second of the day. They drain you mentally ,physically and emotionally.

My Daughter was born with a Large birthmark on her face. This type of Birthmark is called a Port wine Stain. From what I am learning about this type of Birthmark is that it developed in the 1st trimester of my pregnancy and there is nothing I did to cause it. It can come with complications such as Glaucoma or Serge Weber Syndrome. Glaucoma can lead to blindness and Serge Weber Syndrome causes seizures. So far with our Daughter it is just a Port Wine Stain Birthmark. I pray quite often that it will continue to be "just a birthmark"

We have already been to a pediatric optometrist,a neurologist and a pediatric dermatologist. We have been told to get a MRI scan done to rule out the serge Weber syndrome. They will have to put my baby under anaesthetic to do this. We are being referred to another pediatric eye Dr. because the Neurologist we saw recommended a Better one.

The Pediatric dermatologist has informed us that we can go ahead and do Laser Surgery to reduce the redness of her Birthmark. It will never fully disappear,but it will diminish drastically with a series of these procedures.

What am I feeling?

Overwhelmed ,Sadness, Confusion over everything..........Angry and Hurt that my precious Baby has to go through all of this, Concerned in my head about weather or not we are making the best possible decision for her and the rest of her life.

I will continue to Pray for answers and peace in my heart.... as I know that God gave ME this Gorgeous Little Girl whom I Love so very much.