The months are flying by, which means we are getting closer to the first rounds of treatments for Zoe!! This update will be a long one so feel free to skip through or ask any questions.

Thanks to everyone who showed up for Zoe's fundraiser and donated to helping her make big moves developmentally and neurologically. It means so much for our family to have such an incredible village and community helping to support her from near and far.

As far as therapies and such goes, I can best explain what we have lined up for her by focus on the brain at Apex Brain Center here in Asheville and focus on the body at Napa in Charlotte. These treatments are what your donations are helping with...
   -JULY: The brain focused treatment center will include Hyperbaric Oxygen Therapy, laser therapy, and other modalities-including a gut focused treatment, to try to bring as much healing and development to the brain. A good bit of the damage Zoe took to her brain was the Cerebellum, which is charge of balance and posture, fine tuning movements and coordinating sensory input to keep you upright. This is important as Zoe is still not able to hold her head up independently for long at about 13 months old. We're hoping to achieve better body coordination out of this treatment and help her be able to control her hands and arms as well.
-SEPTEMBER: The body focused treatment, NAPA, will include a 3-week series of intensive physical, occupational and feeding therapy to help Zoe learn how to work her body and gain strength. She's in a unique position because by having Down Syndrome she has lower muscle tone (AKA Hypotonia), but has higher muscle tone (stiffness and heavy extension patterns) due to her brain damage, Hydrocephalus and being at a higher risk for developing Cerebral Palsy. While she is getting stronger every day, many kids in her position make amazing physical developmental gains with this type of therapy. She will continue to receive physical and occupational therapy once a week and speech/feeding 3 times a week.

Health Updates:
-Our girl has bouts of what is called Neurostorming, often a side effect of brain damage. These are basically abnormal brain waves telling her body to go into fight-or-flight mode. She will tighten her arms and clench her fists (called posturing) and sometimes her hands and feet will go purple. Neurostorming can happen for a number of reasons and effect multiple systems of the body when it occurs, but currently her Neurologist is working with us to keep an eye on it with potential of adding on a relaxant and potentially ordering another EEG to look for absent seizures, but doesn't deem it necessary yet.
-Her shunt has been operating properly according to what we see. Zoe even caught a head cold and we were very close to taking her to the hospital due to slight swelling and her head circumference getting large again. Luckily, Neurosurgery was able to squeeze us in just before her long awaited Urology appointment and explained that the pressure from the cold may have caused the swelling. We have been cleared for a 3 month check up and will be going back in early July, just before the brain center treatment, to get another MRI to see how her brain is looking.
-Her Urology appointment went well overall. A scan of Zoe's kidneys showed slight fluid in one, but overall healthy. Speculation is that she will grow out of the UTI's and not have to stay on a precautionary dose of antibiotics for much longer, however we aren't willing to risk another UTI/shunt infection. As explained by her complex care doctor, plastic in the body can automatically draw bacteria, so certain infections especially in the belly or abdomen area can become infected rather quickly and clog the shunt, which explains the reason UTI's are considered more dangerous for Zoe. 
-Zoe is still under Hospice care. While on a healthy streak right now, we have recently changed her food from baby formula to toddler whole food blends, which is literally just pre-blended and packaged foods. The supplier that sends the pouches was late on delivery, so Zoe's weight fluctuated and that, coupled with growth made her eligible for another period, or 8 weeks of Hospice.
-We went to see an Otolaryngologist at Wake Forest in Winston-Salem to have Zoe seen by what is essentially a souped up ENT. This has been on the schedule for a while due to Zoe doing what I call a squeaky-wheeze when she eats. Mostly, she is growing out of it, but still has her moments. A quick scope in office showed a clear airway and nasal passage, so we are cleared from them for another year unless something else comes up that needs more attention. We will keep working with Zoe on feeding therapy as she's currently taking small spoonfuls of different purees and we are hoping to introduce a bottle to her. 

As we move forward from some of these big appointments, we are just hoping to keep Zoe as healthy as we can so that she can focus on getting stronger! Thanks for following and supporting our journey through all of this and know that we feel all of the prayers and love. We truly have miracles on our hands with this one!