We're excited to share some of the latest updates in Brooklyn's journey!

One of our biggest goals has always been helping Brooklyn become less dependent on her ventilator, but unfortunately, we’ve had another setback.

Brooklyn passed a sleep study about a year ago, and we were told to just take her off the ventilator at night. We tried, but she became very sick and regressed so badly that it took months just to get her back off the vent during the day.

Once we finally got her back to baseline, we started taking things much slower. We were sprinting her off the vent during naps and for about 3–5 hours at night, and she seemed to be doing okay.

Over the past two months, though, she has been needing more and more oxygen while sleeping—even with the ventilator. It started at 0.5 liters, and now she is usually needing between 1.5 and 2.5 liters.

Because of that, I requested another sleep study. Once again, we were told to try taking her off the ventilator, but this time using Airvo instead.

The first day seemed okay, although she was slightly less active the following day. By day two, she wasn’t interested in playing, moving around, or doing much of anything. Her work of breathing increased, she couldn’t maintain her oxygen levels, and she needed to go back on the ventilator with oxygen around the clock for two days.

Now we can’t even get her off the ventilator for naps because her work of breathing becomes so high.

It’s frustrating and scary to watch her lose progress every time we try, especially when we’re following the guidance we’ve been given. We plan to ask the pulmonologist in Boston for feedback and other options while we’re there. It may just take longer than we hoped, but right now, our priority is getting Brooklyn comfortable and safely back to her baseline. We’ll keep everyone updated. 💜

This September, Brooklyn will be traveling to Boston Children's Hospital for a comprehensive evaluation with their Aerodigestive Program.

For more than two years, Brooklyn has struggled with severe swallowing difficulties that have left her unable to safely eat or drink by mouth. Despite evaluations at multiple children's hospitals across the country—including Primary Children's Hospital in Utah, Children's Hospital Colorado, and Children's Hospital Los Angeles—we still don't have answers as to why she suddenly lost the ability to swallow.

While we're in Boston, she'll undergo specialized testing and meet with a team of experts in pulmonology, ENT, gastroenterology, speech and swallowing, nutrition, and aerodigestive care. Our hope is to finally get answers and, most importantly, a treatment plan that will help Brooklyn safely swallow again.

During this trip, we'll also be seeking a second opinion on her tethered spinal cord to ensure we're making the best decision moving forward.

❤️ We Still Need Your Help

While many of Brooklyn's medical appointments are covered by insurance, the expenses that come with traveling across the country are not.

At this time, we're still seeking assistance with:

• 🚗 Rental car

• 🏨 Lodging

• 🍽 Meals

• ⛽ Gas

• 🅿️ Parking

• Other travel expenses

If you know of an organization that helps families traveling for specialized medical care or would like to help in any way, we'd be incredibly grateful.

From October 5–8, Brooklyn will have a 72-hour EEG completed at home. She has staring episodes throughout the day, and because she is nonverbal, it can be difficult to tell whether they are seizures. We also don’t know if she could be having seizure activity while she sleeps as this was found in a previous EEG.

Her clobazam was recently increased, so the EEG will help us see if the higher dose is controlling her seizures. Brooklyn has also needed more oxygen while sleeping, and we want to find out if nighttime seizures could be causing or contributing to the changes in her oxygen levels and breathing.

We’re hoping the longer EEG will capture a clearer picture of what is happening both during the day and overnight—and finally give us some answers as to why this sudden need for oxygen and not being able to get off the vent.

In November, Brooklyn will return to Primary Children's Hospital in Utah for tethered spinal cord release surgery along with a laminectomy.

A tethered spinal cord occurs when the spinal cord becomes attached inside the spine instead of moving freely. As a child grows, the tension placed on the spinal cord can affect mobility, bladder and bowel function, sensation, strength, and overall nerve function.

A laminectomy is a surgical procedure in which the neurosurgeon removes a small portion of the bone on the back of the spine (called the lamina). This provides access to the spinal cord so the surgeon can carefully release the tissue tethering it and relieve the tension.

Our hope is that surgery will help with her mobility.