14 Months Old: Checking In — The Joy of Mira

When I decided to create this blog, part of the reason why was to be able to clearly communicate information about Mira to share with our family and friends. When you have as big a family as we do, and so many friends that genuinely care about Mira, you realize three things.

1. Translating medical information is daunting.

2. People who genuinely care, ask a LOT of questions.

3. Group texts are quite possibly the worst thing in the world.

I’ve been meaning to add a medical update for a while, but the truth is, the past 4 months have been overwhelming. We have faced seemingly endless challenges and simply didn’t have enough answers to our own questions, let alone anyone else’s.

On Thursday, Mira turned 14 months, and we made our 6th trip to Nemours Alfred I. duPont Hospital for Children in 5 months. We spent several hours with several doctors so I wanted to communicate it before it starts to fade in my overloaded brain.

The Bad:

We learned the medical term “LTE” (Life Threatening Event). If you read Mira’s medical records, you see this acronym several times. Three little letters that I hope to never see again.
The incredible neurosurgeon that performed Mira’s spinal decompression told us her spinal cord was “significantly crushed.” Hence, the emergency surgery.
Due to the severity of her cord compression, Mira lost a lot of strength and muscle development on the right side of her body.
Two months post-op, Mira had a sleep study. The results confirmed her central sleep apnea improved, while her obstructive sleep apnea worsened. According to the study, approximately 7 times an hour during sleep, Mira has a “pause” in her breathing. The doctor believes this is due to low muscle tone and not something (like tonsils) actually blocking her airway.
We were prescribed a CPAP machine, a small air compressor that delivers air through a face mask.
Mira wants NO part of the above mentioned CPAP machine (can you really blame her?) so we are working hard with the pulmonology team to figure out alternate solutions.

The Good:

Mira’s spinal decompression surgery was a HUGE success. We were told this was one of the most severe cases they have ever seen as well as the one with the most dramatic positive results. (See below for MRI results)
Mira is growing and gaining weight at a steady pace. She is in the 50th percentile for height and weight on her own chart.
Mere hours after decompression surgery, Mira gained full head control for the first time in 10 months.
Mira can now sit up and is developing core strength, something she never had before.
Spinal X-rays were taken and all looks good however, she is still not a big fan of being held down on the X-ray table.
We were given the green light to begin physical therapy and were very fortunate to find a (somewhat) local therapist who has experience with Achondroplasia.
We have now mastered every possible route from Freehold, NJ to Wilmington, DE.
We found an incredible ice-cream place 1 mile from the hospital.

The Unknown:

Mira has some minor feeding issues. She coughs while drinking her bottle and gags on any food thicker than stage 2 baby food. Speech/Feeding therapy and a swallow study may be in her near future.
Adenoids might need to come out. TBD.

After several hours sitting around a conference table, Mira’s doctor turned to us and said, “You’ve seen some choppy seas lately but rest assured you are in a very safe boat.” I think that sums up exactly how we feel. We are safe. We are supported. We are in the very best hands possible. We are cautiously optimistic for smoother sailing ahead.

This summer began inside the walls of a hospital room, and ended inside the same hospital, only this time with a clearer picture, more answers and a remarkably happy and resilient baby.

Despite the difficulties behind us and the challenging road ahead, we can’t help but be grateful for this brave little girl with the big eyes, the electric smile and the belly laugh that makes every unimaginable moment well worth it.

Mira's before & after surgery MRIs. The condition called "foramen magnum stenosis", is when the opening at the bottom of the skull is not large enough for the spinal cord to easily pass through. In Mira's case, she suffered from an abnormally sm… — Mira's before & after surgery MRIs. The condition called "foramen magnum stenosis", is when the opening at the bottom of the skull is not large enough for the spinal cord to easily pass through. In Mira's case, she suffered from an abnormally small passage, which caused a severe compression to the spinal column (see BEFORE image). The surgeon removed the bone and ligaments from the problem area to make more room for the spinal cord (see AFTER image). Without proper treatment, this could have been extremely dangerous and even fatal.