More Faith, Less Fear

Well folks, Maggie completed all of her doctor visits last week and all the test results have arrived.

These were three big ticket items: 1) orthopedic exam of her hips and legs, 2) opthalmology follow up on her eyes and 3) a sleep study. Walking into these exams we knew that surgery was on the table in each area. Future surgery on her hips if the joints weren’t properly formed, surgery on the muscles surrounding her eyes, and surgery on her adenoids and tonsils if her airways were obstructed. None of these items are out of the ordinary for a child with Apert, rather these are considered pretty normal procedures to have a good quality of life. I walked in hoping beyond all hope that my realistic mind was wrong, I walked in resting on the faith of a lot of other people because the Lord knows that mine still needs growing. And the Lord did not disappoint.

Maggie’s eye exam was first and we went in knowing that patching had improved her eyes tremendously, but her eyes were still pulling in at times. We went in knowing that eye surgery, despite being pulled off the table previously, could be back on the schedule if her eyes were not doing what they needed to do. When our doctor came in to consult she said, “Maggie needs a stronger prescription for her glasses, which is good. If she didn’t need new lenses I would have recommended surgery.” Turns out this latest adjustment with her glasses could help Maggie’s eyes correct themselves. Please Lord!

Maggie’s orthopedic exam gave us more stellar news. After examining her x-rays our doctor explained that her hip joints are structurally good and within normal ranges for walking. He gave us the option of braces because her ankles do lean in currently, but also suggested that given time, physical therapy and encouragement Maggie could find her way to walking independently without them.

(Okay, I want to pause for a moment to tell you all a side story. Finding Maggie’s orthopedic doctor was nothing short of divine intervention. I always pray before scheduling a new doctor. I feel like the Lord has continually given us the doctors that we need and so I trust Him to lead us loudly in this matter. I reached out to the amazing orthotist, who had helped us with Maggie’s helmets and asked for his recommendations. A few days later it was St. Blaise’s feast day (the patron saint of sore throats or throat illnesses, a man I consider a good friend) and I received a message back from our orthotist. Four recommendations, and one of them was… Dr. Blaise. I chuckled and said, “Bingo!”. A month later we were at Maggie’s clinic day with all of her medical team and they asked if I had an orthopedic in mind and I mentioned Dr. Blaise. Their response was, “Oh perfect, he is who we would have recommended.” So three recommendations later we arrive at his office and everything went smoothly but nothing spiritually significant. I felt like we could have had the same experience with a different doctor until he commented on why he had to change our appointment time. He mentioned super briefly that he had been shifting all of his appointments and schedule around because of his wife’s illness. I think we were introduced to him so that we could offer prayers. We told him that we would be praying for her, but I think I need to open it up to you all as well. Can you pray for a miracle for her? I will keep you updated.)

Lastly, Maggie’s sleep study. This one was our biggest concern because we knew that her breathing was obstructed. Her nasal passages are super narrow and we hear her noisy breathing when she lays in certain positions. Our ENT had explained to us that the removal of her adenoids and tonsils could help alleviate breathing issues but it could also lead to aspiration of food and a movement backward in speech. The other possibility with the sleep study could be that she would need a CPAP, which meant a whole new situation for Maggie. The results alleviated all of my fears. It is a very mild obstructive sleep apnea with no signs of decreased oxygen during her sleep. She does not need surgery or CPAP at this time, just a follow up to make sure that as she grows she is going in the right direction.

Three for three, no surgeries!

Once again, I cannot thank all of you enough. The support, the prayers, the kind words and encouragements, the friendship and the love that you all pour out over us is a humongous gift to our family. Maggie is blessed beyond words to have this amazing community behind her. Thank you, thank you, thank you.