It Takes a Village
True.
When my doctor decided to perform my C-Section early, our next door neighbor graciously took care of Ben and Rori. When we told my parents, they immediately drove to Maryland from New Jersey. While Paloma, Alan, and I recovered in the hospital, our closest local friends brought food and spent time with us. After bringing Paloma home for the first time, my dear sisters in my Bible Study brought us dinner. When Paloma went back to the NICU, our town started a meal train.
In the past four months, we have had a handful of special victories. All of which we owe our community many thanks for helping us get to appointments, go grocery shopping, and take mental breaks. Our family, friends, neighbors, fellow parishioners, friends of friends, family of friends, colleagues, and so on, we thank you. We are so incredibly blessed to have you in our lives.
As for an update on Paloma’s health, the neurologist is concerned that she is having different types of seizures. She will have a four hour EEG to get a clearer picture of what is happening and then prescribe seizure medicine that will hopefully eliminate the seizures. She also has officially been diagnosed with mild-moderate hearing loss in her left ear due to a very tiny ear canal. Next week, she will be seeing an ENT for medical clearance before she can wear the hearing aid her audiologist is recommending. Two days after the ENT, she will be getting another MRI of her spine to determine if she needs surgery. If she does, the neurosurgeon will perform the surgery at a later date. Our community and support system alleviates most of that anxiety...some times with coffee and comfort food.
A few weeks ago, Paloma found her hand. A few weeks after that, she smiled for the first time. These things are not a big deal for a typically developing child. However, when you’re not exactly sure your 3 month old can really see, or is even aware of her surroundings, a tiny milestone is an emotional-call-your-husband-frantically-and-scare-him-jump-for-joy kind of moment. For the rest of Paloma’s life, I will absolutely live for these moments.
Paloma is making strides each day, slowly but surely, she is making them. Because Pallister-Killian Syndrome is a mosaic syndrome, meaning it manifests differently in every person, we are forced to have no expectations of what she can and will do. So when she does the tiniest thing like lift her head for 3-4 seconds during tummy time, I am SO joyful. With every little new thing she does, we are absolutely ecstatic.
When I tell you that your prayers are most definitely felt. I truly mean it. I believe Paloma would not be thriving as well as she is without prayers from everyone, and the grace and mercy of Christ. We also would not have the strength to endure this all without your prayers so thank you from the bottom of my heart.
The very first time she found her hands.
The very first smile I was able to document!
She’s so joyful...when she’s fed, changed, and well rested.