Apologies in advance for this long update - It has been a long time and so much is happening! Kate is celebrating another milestone - she is one year old adjusted age! That means if she had been born on her due date, April 7th, she would be one year old today. It is hard to believe her actual birthday was so long ago on December 20th... being born 3 1/2 months early was certainly not an easy road to take. But what a testament Kate is to modern medicine and the power of prayer. Because of both - our girl is absolutely thriving!

Kate has been home over 5 months now. We have fallen into a good rhythm, and it is such a joy to watch her interact with her siblings and (FINALLY) the dog! 😆 She and Snoop started out more like frenemies - unsure of each other and competing for attention. Kate has just recently taken a huge interest in Snoop - squealing with excitement when he comes near her. Snoop remains skeptical... but tolerant. We go on walks with Kate in her stroller and Snoop right by her side on his leash. It is pretty cute. Besides the dog, Kate just lights up every time she sees one of her siblings come home and they love checking on her first thing when they walk in the door. No one seems to make Kate smile as much as her dad - and her first word "Da Da" could not have been more fitting. We speculated for weeks about whether she was saying it on purpose or not. All doubt was erased when I had Eric on FaceTime when the family was gone on spring break. She had the phone in her hands and she focused so hard on his face and whispered "Da Da" right to him. I was so happy he got to witness that moment! My goal for her next (of course) is to say "Ma Ma" and I say it to her nonstop, to which she looks at me with a mischevious twinkle in her eye and says nothing other than "Da Da". 😂

Besides starting to babble since coming home, Kate also now has 5 teeth! Her hair is also finally starting to grow and we can see her hairline starting to form. After much debate on her hair color over the past year, we can finally see she is a little blondie just like her siblings at her age (except for Henry, the token family brunette). Kate can also sit independently now which was a huge milestone! She continues to work on putting weight through her legs and arms, working towards crawling. Physical therapy is not her favorite, and she often fakes tired to try to get out of doing it. 😂 Her therapists no longer fall for her tricks and work her hard! Progress is being made every day as she continues to get stronger, with their goal for her to be caught up physically by the age of 2. 

Kate does not love PT but she does love clapping and dancing to music of all kinds! Her piano is her favorite toy, and she smiles ear to ear when we tell her Alexa to play any type of music at all. She watches the dot light up and just beams with excitement waiting to see what it will play. And of course she still loves John's guitar therapy sessions (which is a really great way to get him to practice - bonus!). 

The most exciting medical update is that Kate is now "sprinting" off the ventilator for an hour twice a day! That means she spends two hours per day breathing completely on her own! Over time, the sprinting intervals will continue to lengthen, with the goal being to be off the vent during the day completely. Once that is done, the final step is a sleep study to see if she can be without the ventilator at night while she sleeps. This is a long ways off (likely years) but we can finally see the path towards decannulation and believe that Kate will get there! Those are the big steps. In the meantime, we have smaller goals including a swallow study so we can work on oral feeding. I am hopeful we can do that very soon! Kate is very interested in food, especially whatever I am eating around her. I give her little tastes and she gets super excited. We are very grateful she has not developed an oral aversion and shows all the signs she will want to eat by mouth the moment she gets the ok. 

Besides medical progress, we look forward to getting to do more fun things with Kate as our confidence in caring for her grows. Other than walks on the trail, Kate has only left the house to go to doctor's appointments. Hopefully a trip to the zoo is in her future, or a sibling's soccer game, or Mass at St. Vincent de Paul. As the weather warms up and respiratory season comes to an end, we can't wait to do more "normal" things with her. As she has since the day she was born, Kate is still teaching us not to take a single little thing for granted. 

We are so grateful for our totally awesome team of nurses that keep us sane! They are truly like family to us, and Kate loves each and every one of them. I also want to give our Respiratory Therapist a shout out for his guidance with the equipment that used to be so intimidating to me. He spoils Kate with ukulele sing-alongs at every monthly visit that never fail to bring a smile to my face (and a tear to my eye). Kate's doctors and specialists also continue to guide us at follow-up appointments and answer my endless stream of questions via Childrens Health Connect. Thank you for all that you do!

If you have read this far, thank you - for your endless support and prayers for Kate and our family. As we look towards spring please keep the prayers coming as we get ready for Grace to graduate from high school and go off to college in the fall. I look at Kate and remember Grace at this age like it was yesterday. It just shows how fast time goes, and how this stage of life with Kate's medical complexities will someday be a blip in time that we will look back on and wonder - how in the world did we do that? Well we can't do it alone, and we certainly haven't done it alone. It takes a village for sure - thank you for being part of it. 💕

Love,

Emily