A Dream Come True

We had a whirlwind trip to see Maggie’s team. Neurosurgeon, Plastic Surgeon, ENT, Audiologist, and Speech Pathologist. It was 4 hours of trying to remember details about her birth, her progress and look into the future for what was ahead. The main objective for the meeting was to determine Maggie’s neurological needs. By two years of age it is the common case that a child with Apert would have another skull surgery to provide more room for brain growth. The road we had set for Maggie was one that tried to eliminate another surgery for her brain, so a lot was riding on these four hours.

Back in 2019, when Maggie had surgery at 3 months our goal was to get in early so that we could avoid multiple surgeries later, we also wanted to provide Maggie’s brain the room to grow and release any pressure she might have had. We did not want to do distractors, we did not want to do a fronto-orbital advancement, we wanted her skull to grow into its healing. Our team, although willing to perform the surgery, mentioned that this surgery was not guaranteed to do all that we had hoped.

After her skull surgery we saw indications that Maggie had been experiencing some level of pressure. With the coronal sutures released we saw that she smiled more, cooed readily and interacted in ways we had not seen in her three months of life. The surgery was an immediate win and demonstrated to us that we had been guided to make the right decision for Maggie’s care. The larger goal of eliminating another major surgery for brain growth was yet to be determined, until yesterday.

Yesterday we received the news from our neurosurgeon and our plastic surgeon that Maggie won’t need another surgery to give her brain more room to grow. We heard the words, “This is beyond our expectations.”, “She is not the normal case.” “She looks so good!” The hopes that we had carried around for 2 years have come to fruition, and I am still reeling from it all. Knowing that we don’t have to put Maggie under for another big surgery right now is worth so much.

I know that this doesn’t mean no more surgeries, I know that there are other areas that we need to help Maggie in, but I am so ecstatic that the Lord has blessed Maggie with this huge gift of healing and it makes me want to hope for so much more. I look at Maggie’s face compared to when she was a baby and I see how much her face is moving forward, giving her room for breathing, and I wonder, “Lord what other miracles are you going to give our Maggie?” I can’t help but say, “WE WILL TAKE ALL OF THEM LORD!”

Maggie’s other appointments got us working on a few other areas of her health. Maggie’s breathing, although good, is not where it should be. If she is laying on her stomach facing her right shoulder she sleeps soundly and breathes through her nose, if she is any other way, she snores, gasps for air and barely gets any sleep. These issues impact development in a big way. If you see our baby, she is quite tall but she has very slight limbs. While this can be a trait of Apert, it can also be an indication that she is burning too many calories by just trying to breathe. In the next month we will be trying a few non-surgical means to improve her breathing, we will also be scheduling a sleep study.

Maggie will be referred to an Orthopedic who is going to work with her on identifying any needs for walking. Maggie cruises around with a walker, and amazed us all by standing up on her own the other day, but her balance and foot placement indicate that she might need some orthotics to help her progress. She will also be seeing an Orthodontist to identify any ways we can help her tiny mouth get a little more room for the future.

It was a lot for a day and Maggie was amazing and the big kids just went with the craziness of it all. I am constantly thankful for the sacrifices the kids make for their sister, the daily, weekly and monthly ones that show Maggie that her health, her joy, her happiness are super important to them.