It is hard to believe it has been a year. This time last year I was wheeling back and forth between my room and the NICU to breastfeed Alli. Every three hours. My mom stayed with me through the night to make sure I could get back and forth and then we came back to the room to pump for 10 minutes after. We were so excited that she fed so well by mouth. Upon being discharged from the hospital the doctor in charge of the NICU commented that he had never seen a baby with Down Syndrome do so well. I think it is because we were so committed...from the start. There was all of the adjustment one would expect to the news as it unraveled over the course of my pregnancy and then over the course of the past year, but no matter what, I think we can safely say that we have risen to every challenge set before us and have done our best to give Alli the best life possible.
Today just seems surreal. We had an amazing celebration with extended family and part of me still can't believe that we are in Michigan, much less that Alli was in Chicago 2 weeks ago. We have come a long way since this time last year. Alli made it through the NICU without incident, endured a complete cardiac repair of 5 heart defects, has fought through multiple epilepsy medications to control infantile spasms, has had countless EEGs, participates in weekly physical and occupational therapy, has weathered two colds, and withstands her ng tube. Through all of this, she has an amazing spirit and is continuing to develop as her body allows. Jason and I saw her roll over 2 times this weekend. A developmental milestone we have been working on with her for months. She is amazing. Likewise, Jason and I are different people than we were a year ago. I have walked away from a career that once showed great promise for a job that gives me sanity. Jason has made sacrifices to be home for bedtime almost every night and spend time with us on the weekend. We have conquered multiple medications, learned how to insert feeding tubes, coordinated complicated treatment with multiple specialists, and have learned how to adapt to less than ideal circumstances so that we have a semblance of normal life for ourselves and the girls. We take advantage of opportunities to get out with eachother and the girls, knowing that good times can change to challenging times in an instant and without warning.
We know that the next year will bring new challenges. Alli will be getting a G-tube. We will be contacting a surgeon this coming week to schedule a consultation and then the procedure. Based on discussions with multiple specialists this seems to be the best option for Alli. We are already working with a feeding specialist in hopes to keep the tube in for as little time as possible. We love Miss Heidi and she is Midge approved! We will also be scheduling an appointment with an ENT to have Alli's adnoids checked. Her sleep study showed a mild obstruction and her oxygen sats have been at the low end of 90 - cardiology has ruled out shunting as a cause for this, so our next stop is the ENT to see if her adnoids are causing the problem. We will continue her treatment for infantile spasms and have an 8 hour EEG scheduled for July 16. Then - there is all the unknown. What I have learned over the past year is that no matter what - we can handle anything that is set before us. We have the support of wonderful family and friends and our faith grows more and more each day through this experience. We have experienced countless miracles - some that are known and some that are yet to be revealed and I'm sure there are a few that haven't been noticed but when I reflect back I often think to myself - wow - it was miraculous that...and another one comes to light. God is working with us every day.
So, thank you for everything you have done for us over this past year. For the many prayers, masses, novenas, well wishes, gifts for our daughters, visits to our home, phone calls, emails, blog comments, meals, and all of the other things that are escaping me in this moment. It all helps us to keep a semblance of a normal life and feel connected to you.
Samantha has been amazing - by the way. She is talking in sentences and is thoroughly enjoying having dance parties in the living room with us and Megan, her nanny. Her favorite is the Hot Dog Dance from Mickey Mouse Clubhouse. She turns around and says "Holy Cow, Mommy!" and says "again!" as soon as it is over. It melts my heart. She also loves tinkerbell and minnie/mickey mouse. She has had a few opportunities to hold Alli in her lap and loves to give her sister "big hugs." She enthusiastically helped her open her gifts this year and showed her (hand over hand) how to use many of them. They are so lucky to have each other.
