Fast Results

(before)
We had another answer to prayer, though not the way I thought it would go. We had the MRI on Friday. Then we had to wait the long weekend to get the results. My plan was to go up on Tuesday, spend three hours in the nurses office to start the medication (propranolol). But life doesn't often go the way I planned.


(watching the mobile at Children's)


The MRI showed a malformed blood vessel which meant we had to start the medication as an inpatient at Children's. So Tuesday Ayla and I headed north. Instead of three hours we spent 3 days. But the results were AMAZING! We are praising God. After one dose we noticed a HUGE difference in both the hemangiomas on her cheek and her eyelid.

(after one day on propranolol)

Propranolol works from the inside out, both the hemangiomas deeper layers under the skin. The other ones, just reds spots are starting to get lighter after a week.

(today!!)

MRI

We had an answer to prayer this past week. Originally Ayla' was scheduled for an MRI on June 4th, that two weeks later than we wanted. Thursday the dermatologist called and said we needed to start the steroids because things were taking longer than they should. As soon as I got off the phone with the doctor Children's hospital called an scheduled us for the MRI the very next day.

But now we wait again. This is a holiday weekend, hence no one is working Monday. Results were done Friday night but our cardiologist was not in on Friday. I plan to call early Tuesday. My hope is that Ayla and I can go up Tuesday afternoon to start the medicines that will help her hemangiomas to start to fade. The one on her eye has made it near impossible for her to open the eyelid or use that eye. We are very concerned for her eyesight.

Busy Busy

This weekend was busy.
Baseball game:

Ethan enjoyed being Catcher. Looks good!

Ayla enjoyed the sun and vitamin D.


Then we went up to Joint Base McCord Lewis for Armed Forces Day. Ethan got to sit on all the military vehicles, hold real guns, pretend to fly the helicopter, and talk to real soldiers. I loved this. Growing up on a military base and going to the Air Show every year, I had similar experiences. So glad my son can enjoy a bit of what I use too.


Ayla just sat back and watched her brother.

More Prayers Needed

We are in need of your prayers again for Ayla. Over the past couple of weeks we had notices two birth marks, Hemangiomas, developing and darkening on Ayla's face. One on her right eyelid and one on her right cheek. This is all on the same side as her cerebellum problem. Also in the last two weeks I noticed that she was not able to open her right eye fully. This really worried me. So I took her in.

Because of the rapid growth of Ayla's Hemangiomas and her brain malformation it has been determined they are all connected, a condition called P.H.A.C.E.S (heart is for heart and a is for aorta). The eye one has also started to affect her eye development. So we have to do aggressive treatment (Hemangiomas are usually left alone and go away by themselves, but can be helped along with steroid treatments or in Ayla's case blood pressure meds). We have to take Ayla to see a Children's Hospital Cardiologist. She will have to have an MRI (unless the one done at birth has all the info...praying for that!) done on her heart and her aorta (at this age she would have to be sedated). Then if all looks good she will start blood pressure medicine at home, after spending 3hrs at the dr's office observing vitals for a reaction. If things are not okay she will be admitted to the hospital for up to 36 hours and start the medicine there.

We also have to have Ayla wear an eye patch 15 minutes a day covering her good eye to help strengthen the weaker eye.

Pray:
Ayla's eyesight will develop correctly
Her blood vessels and heart are fine
No further complications
Mom has the mental and spiritual strength to get through this

Big brother

On April 8th Ayla Martinne was born. I expected her on the 7th, but little Ayla had other ideas. She had to come in her own time! We started the induction on Tuesday, April 6th and she was born at 2:32 am on Thursday, April 8th.


Ethan loves being a big brother. HE wants to hold her, carry her, feed her, and just love her. Ethan informed me that he is waiting for Ayla to get bigger to play with him. Yes, he knows this will take time. Ayla could not have a better brother. Ethan is an amazing helper with a sensitive spirit and a giving heart.

Easter

This was Ethan's last Easter as an only child. He made the most of it. Ryan hid the eggs all through the house for the boy to find. We all enjoyed the hunt. Next year I will have to have him search for his Easter basket items as my brother's family made their daughter do. Sounds like fun.
Sneaky spot 1 (sneaky spot 2 was a frying pan on the stove...so funny!)


Even Ayla's room wasn't safe from eggs.


Having the egg hidden in each room of the house really made the egg hunt fun. Maybe next year we will have nice weather and can do the hunt outside like normal people. But wait, this is Western Washington. We are the normal people.

Rock Band

Ethan is awesome at singing on Rock Band. His favorite songs are Hungry Like A Wolf, Eye of the Tiger, Living on a Prayer, and Monsoon. Yes my son has eighties rock taste!