I've been avoiding this post all week. With a lot of different emotions, I returned to the job I love last Tuesday. I went out the backdoor to my car to find well wishes from my loving and supportive husband and walked into the doors of CMS to hugs, flowers and kind words. You all know how to make a girl feel loved! Thank you to all! It was tough. I knew the day was coming and I tried so hard to prepare myself knowing the day would come when we would need to leave our fragile little guy in the hands of others. As the week went on, each day felt a little more like a new normal. I constantly remind myself how blessed we are...we have Max and Austin in our lives, we have fabulous support and care from PHS and we have family and friends who love us dearly! Needless to say, it hasn't been easy, but I'm surviving.
Nothing big to report medically. Austin is up to 11mL/hr enteral (tube) feedings and his outputs have been in the mid to upper 40's. Dr. Kevan wants him to stay under 50mL/kg. He continues to gain weight and was 4.89kg (~10lbs 12oz.) on Thursday. Austin has physical therapy once per week at our house. He's working hard to gain more head/neck strength and midline activities (looking straight forward, bringing his hands together and even touching his hands to his feet). He's improved tremendously on bringing his hands together, but the other two are a little more challenging for him. We absolutely love that Austin has these services to ensure everything is being done to allow him to meet typical milestones for kids with and without Down Syndrome!
Thank you so much to those of you who have already sent loveys and blankets! The pile is growing and it warms my heart every time I get to add another! I know how much this very small gesture will put a smile on a face! If you haven't had a chance yet and would like to donate, we plan to drop them off at Children's Hospital on December 27th after Austin's cardiology appointment. Again, our address is 819 Newberry Lane, Chaska, MN 55318. You can send them or order online and have them sent directly.
Max is doing great...Mom and Dad are not loving some typical 2 year old behaviors, but 95% of the day he is a charming, loving and intuitive little boy! He loves shooting hoops and has figured out light switches! Look out (if you can see in the dark)!
Hope all is well with you and your family!
Hugs,
Brian and Tara
Max and Austin
Thank you so much to those of you who have already sent loveys and blankets! The pile is growing and it warms my heart every time I get to add another! I know how much this very small gesture will put a smile on a face! If you haven't had a chance yet and would like to donate, we plan to drop them off at Children's Hospital on December 27th after Austin's cardiology appointment. Again, our address is 819 Newberry Lane, Chaska, MN 55318. You can send them or order online and have them sent directly.
Max is doing great...Mom and Dad are not loving some typical 2 year old behaviors, but 95% of the day he is a charming, loving and intuitive little boy! He loves shooting hoops and has figured out light switches! Look out (if you can see in the dark)!
Hope all is well with you and your family!
Hugs,
Brian and Tara
Max and Austin
Tara, I cannot imagine how hard it was to go back to work. And what a blessing that you have nurses caring for Austin while you are there. His pictures confirm that Austin is chubbing up, yay! Way to go Austin. Isn’t it amazing what little babies can champion through? Love to you and your family.
ReplyDeleteThose nurses are so lucky to be able to love him up every day. And you are so fortunate to have those nurses to love him. Know he's in good hands while you do what you love too. I'm sure it's so hard, but you are amazing. Keep doing you!
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