Making plans

Nora loves hanging out with her big sisters!

I feel like I need to write a disclaimer-I don't really know what I'm talking about. If you're reading something and think, "Ummm, that's not correct, she's crazy" you're probably right. It's dangerous letting a sleep-deprived lunatic try to relay information, but I'll try my best:) I try to keep things short as possible, but then sometimes leave out important information. But then sometimes I ramble on (like now:) and don't make any sense either...feel free to ask questions or correct me. 

Thank you so much to all of you that have been praying for Nora and our family. We are so grateful!  

When we met with the vascular anomalies team last week, we were hoping to walk away with a clear plan. Instead, we left more discouraged than anything. A couple of the doctors were really not comfortable with trying the diet. Their reservations made us question things, even though we had felt very comfortable and optimistic about it going it to the meeting. We still didn't feel right about trying the Sirolimus, so we asked the doctors if they would be willing to talk to the Dr. in Seattle, hoping that would put their minds at ease. They said they would, but last we heard, they were still trying to get in contact with Seattle. 

Yesterday, we went to a conference for families of kids with PHACE syndrome. There was a photographer, Rick Guidotti, who spoke about his organization, Positive Exposure. One of our Drs wanted us to hear him and have him take Nora's picture. It was nice meeting him and hearing about his organization. (Here is a link if you want to check him out-he used to be a photographer for some high-profile clients, but now runs not-for-profit organization that wants to "transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism" <http://positiveexposure.org/> ) While we were there, a mom introduced herself and said she was from Seattle. I told her we had been talking with Dr. Perkins in Seattle, and she said her daughter sees him too! She had great things to say about him, which was very reassuring to hear. I love how God arranges these 'random' meetings at just the right time:) After talking with her, I walked back to Evan and found him talking with one of Nora's doctors. She was saying they had been in contact with Dr. Perkins. They are still waiting to talk to one more doctor, but she said she thinks we should start making plans to go to Seattle. I was not expecting her to be so on board with it! 

That was the confirmation we needed. So, as of now, we are going to move ahead with trying the diet. We feel a total peace from God about the decision. So...now we need to start figuring things out. My head is kind of spinning, thinking about all things we need to do. First I need to talk with Seattle and see if they are still up for trying it! If so, we are hoping to start it soon. 

For those of you that are praying for Nora, please pray for wisdom as we proceed, and that things would come together nicely.  We are asking that God will continue to provide and open doors if this is His will, and if it's not, that He would make it clear. 

Nora's tongue seemed to be a little better for a couple days, but it is currently as swollen as ever and still bleeding off and on. Please continue to pray for healing for that. Please also continue to pray that she stays free from infection/sickness. The rest of us are feeling a little under the weather, and it's no small task keeping her adoring big sisters off of her! 

Besides her tongue, Nora has been doing well. Her little smile never fails to melt my heart! Lina says Nora is "shining" when she smiles:) Nora is moving faster, sitting up longer, and getting stronger every day-her therapists said they are amazed at how well she is doing. We are so grateful for Nora's progress. Psalm 105 says, "Give thanks to the Lord, call on his name! Make known his accomplishments among the nations and tell about his miraculous deeds!...Seek the Lord and the strength he gives. Seek His presence continually" I think what God has done with Nora is pretty miraculous, and I don't know what I would do without His strength!
Thank you again for praying for Nora and being a part of this journey with us!

Nora maxing out her leash:)