It’s been over a year since we have given a true update on Z and we apologize! This will be a very long/thorough update for those of you that are invested in Z's journey! Ziva is truly doing great overall! That being said, she is still considered a medically complex kid and has a lot going on, but she doesn’t let any of it hold her back! This past year has felt the most “normal” for us as Ziva gets bigger and all of the medical stuff is part of our everyday life now. And we are so thankful that as she has grown, she isn’t as fragile or vulnerable as she was the first 2 years she came home. It’s hard to know where to begin with an update, so I’ll just break it up by all her specialities!

⁃ Airway update- Ziva continues to get airway scopes every 6 months, and her *pinpoint* airway has started to grow with her which is great news! She still has very unique anatomy with significant narrowing throughout her upper airway which will require major airway reconstruction surgery in the future. The timing of those surgeries is put on hold due to chronic aspiration. Her ENT can’t risk opening up a “highway” to her lungs as this could lead to long term lung damage that she would have to live with forever. So it truly is in her best interest to patiently wait for the right timing, and she will most likely have her trach through her childhood.
⁃ Feeding journey - With many trach kids, the hardest challenge is getting kids interested in food and wanting to eat. Well, when Ziva turned 2, her interest in food skyrocketed and girl loves to eat. Unfortunately she is currently unable to protect her airway and she is at risk of aspirating every single time she eats or drinks. This has been a huge struggle this past year as denying a 2 year food is not easy. That being said, we can still do small “tastes” with her to keep up her skills. But it is a balance as we know she aspirates frequently and we still have to keep her lungs healthy. Thankfully, the trach is a safety net for us to be able to suction things out & it is definitely contributing to keeping her lungs healthy! She gets 100% of her nutrition via g-tube and is growing/gaining weight perfectly!
⁃ GI - Ziva still has tummy issues that will probably stay with her due to her surgical history and unique anatomy in her stomach/intestines. Finding the right regimen to keep her bowels "regular" is an ongoing battle. She has had a lot of testing and has been cleared of many “major” issues which is good!
⁃ Vision - Z had surgery on her left eye a year ago which has worked wonders. Unfortunately she now favors her left eye and is having issues with her right eye drifting outward. She has had 3 prescription changes this year and we still haven’t figured her out. She might need to have surgery on her right eye, but we are hoping her newest prescription change could prevent this. Girl has had to wear an eye patch daily since the summer of 2022 and she is such a trooper! Can’t wait until one day eye patching can become a thing of the past!
⁃ Physical - Ziva has had physical/gross motor delays since she came home from the hospital. She started walking independently before she turned 2, but she didn’t “catch up” with her gross motor skills/coordination/balance like she did everything else. She had a brain MRI this fall that diagnosed her with Cerebral Palsy, although it is very mild and will never get any worse. She is trying to “run” and keep up with her sister and she truly doesn’t let anything hold her back!
⁃ Heart - Z has a history of SVT and was medicated for the first 2 years with 2 failed attempts to come off of medication. Good news - she was able to come off this past year and so far she has had no problems! 
⁃ Genetics - while Z has multiple areas of unique/abnormal anatomy in her midline structures, there hasn’t been any links to any genetic conditions. Genetics is still following her though and will likely study her DNA again in a couple of years.
⁃ Audiology - Z has tiny/extremely narrow ear canals that leads to hearing loss. Thankfully her cochlear work perfectly and she is able to wear 2 bone conduction hearing aids on a headband that work great for her. She has no auditory delays and essentially hears perfectly while wearing her device which is great! There is hope that her ear canals will grow with her and she could outgrow the hearing loss.
⁃ Signing language - Ziva is non-verbal due to her vocal cords being fused together. (There is hope for her to eventually have vocal capabilities after airway reconstruction, but that is in not going to happen in the near future). Ziva has embraced signing as her primary expressive mode of communication. She knows thousands of signs and she is working hard on starting to use sentences and put more and more signs together. While she is “non-verbal,” she has no “language delays” and tests equivalently to other 2 year olds for her language development which is amazing!!
⁃ School - Ziva is getting ready to start preschool next month when she turns 3! She is so excited as she currently watches her big sister go to school everyday! She will have a sign language interpreter at school, and we know this will help her sign language development explode even more!
⁃ Family - Ziva recently became a big sister and she is embracing her new role! It is the sweetest thing! She is also BFF's with her big sister Avery. They have a very special bond! 

Raising a medically complex child isn’t easy, it comes with many challenges and day to day tasks that don’t exist in a “typical” family. But a lot of it has become our “normal” and watching our little warrior girl overcome every obstacle that is placed in front of her does something different to your heart as a parent. Something that words can’t describe. Ziva truly has the best little personality and she is so much fun! We adore our little miracle girl, and we are so thankful God chose her to be a part of our family!