Words of Wisdom

Many beautiful words of wisdom have been shared with us and have given us insight into this pilgrimage with Maggie. Experiences of parenting a child with medical needs, experiences of hope in the midst of trial and they have been buoys in the midst of planning and researching. One sticks out though, and it wasn’t directed at me, it was a word of wisdom for Maggie given by her brother Kiko.

“Maggie, you gotta roll with the punches.”

Kiko said this to her as his parting words before bed. He usually meanders in and out of the room at least 3 or 4 times to get one more kiss or snuggle before he hits the hay. Frequently he delivers a sweet sentiment like, “Sweet Dreams little Maggie Waggie” but that night it was sage advice from a world weary five year old. Indeed Maggie, you gotta roll with the punches.

Maggie has been doing tremendous. She eats like a champ, is putting on more weight, sleeping longer and staying up more during the day, soaking it all in. From what I see and hear from others and their experience with Apert, this is pretty phenomenal and a great sign for Maggie. In my mind, there is only one explanation… our God, who is outside of time, answered our prayers before we spoke them out loud. He knows our hearts and He heard our prayers and answered what we asked for before we uttered a single word. That includes you, thank you for all of your prayers and sacrifices. We would not be laughing in the midst of trial and Maggie would not be doing so well if it weren’t for this community and its prayers. Do not doubt that your prayers are effective, they are so immensely important to us and to her.

Because of your prayers and help, we are finding some great doctors and resources. We already have an opinion from a doctor who has treated Apert previously, and he believes that her hands and skull are the most mild form of Apert. He even suggested that surgery on her skull could be postponed until after she is a year old! You guys…. this is so much better than what we had been told in the hospital. While this is great news, this doctor is not local and would require a good amount of travel to have her seen. It isn’t out of the question but we are getting more opinions from others who are a bit more local.

This next week we are booked with appointments and we would love your prayers. This Thursday, we see the cardiologist. She will have an EKG and an ECG (one is an ultrasound on the heart and the other will be little sticky tabs with wires that they will put on her chest to briefly monitor her). When she was born they saw a small hole in her heart. It wasn’t anything super scary but something they needed to keep tabs on. My prayer…”I want it closed Lord!” and I want my parting words to the doctor to be, “Nice meeting you, I hope I never see you again!”

We received the genetic testing results and she has Apert Syndrome, we will meet with the geneticist on Friday to discuss the results. The following Monday we will meet with our first team of doctors who treat craniosynostosis and syndactyly. We are going for an opinion and are effectively interviewing them. Our baby gets the best. I figure this will be good practice for when boys come knocking on the door… “You think you’re sweating bullets…Boy, you should have seen the Harvard educated doctors we interrogated!” We will meet with another team and an ENT the following week.

So, we are going to be busy.

This Holy Week is going to be memorable but, so will this Easter. So many things to be thankful for…