First I want to say thank you for even taking the time to just to read this. Your time and donation means so much to us.

Our December has been nothing short of busy, a little scary, and just proof that God always has a plan even when we are scared and anxious. On October 28th Addie had her 2-month checkup. We raised our concerns to her pediatrician about how rapidly her hemangioma has grown since birth and especially in the last month. We were referred to a dermatology specialist at Children’s Mercy in Kansas City. After over a month of waiting, on December 5th, we got a call from Children’s where they asked us to send in pictures of the hemangioma. After the dermatologist reviewed them, they called us back and gave us an appointment for the following week on December 9th to see the dermatologist as well as an ophthalmologist because of how it is affecting her eyelid. The dermatologist really went in depth on what kind of hemangioma Addie has, as well as a detailed treatment plan. His plan was to prescribe propranolol, but he said that this medication can affect things like heart rate and blood pressure. He also raised concerns about PHACE syndrome which stands for Posterior fossa malformation (brain), Hemangioma, Arterial anomalies (blood vessels), Cardiac defects (heart), Eye abnormalities. With the area and size of the hemangioma, her probability of PHACE syndrome was very high which would add brain, heart, and eye problems to the list. He ordered an MRI as well as an Echo and an EKG to check for PHACE and to make sure her heart was strong enough for the medication. We were worried on our way up to the ophthalmologist appointment, just praying for good news. They had to dilate her eyes to examine them. After a long examination, the doctor said her eyes are very healthy and the only issue that is present is slight astigmatism due to where the hemangioma is pushing on her eyelid but nothing concerning or any signs of PHACE in her eye!

The following week, on the 17th, we went back to KC for the EKG, Echo and MRI. The EKG was so quick, it took less than 10 minutes to finish. The echo took about 45 minutes to get an ultrasound of her whole heart with everything they needed. After reviewing both results, the doctor came in and said her heart was strong and healthy. No signs of PHACE and she is cleared to start taking the propranolol! Praise God! When we went up for the MRI, they told us that we were going to do one with and one without the contrast, so she needed to have an IV put in. It took them a while to find a good vein, so she ended up being poked twice for an IV. They didn’t want to sedate her, so they had us get her full and tired. When they took her back, we waited in the room for about an hour before they brought her back in. Unfortunately, they said it would be 48-72 hours before we got any results from the radiologist. On Friday the 19th, the radiologist called and said the only issue they found was that an artery that “feeds” the hemangioma is slightly enlarged, but aside from that, it isn’t growing inwards at all and there are no signs of PHACE syndrome! She is cleared to start taking the oral medication as well as a topical ointment that should slow, stop and eventually help shrink the hemangioma.

We are unsure how long treatment will take, the dermatologist is estimating around a year, but with the size of it- it could be longer. We are so thankful for these results, despite all odds saying PHACE syndrome, we only have an enlarged artery and slight astigmatism. But with numerous tests, scans, and multiple trips to Kansas City, we are a few hundred dollars down on medical expenses and have several thousand still to pay. With our insurance restarting in January, our deductible goes back to $0. With multiple appointments each month for the next year, we aren’t sure how to ask and have never done this before, but we know God will always provide and we love you all so much!