Sunday, June 17, 2018

Feeding therapy FINALLY!!





There is so much to catch up on and yet so little.  I have noticed that the last year has felt like an inward journey and so telling a story hasn’t felt like it would make sense.  I remember while traveling I would feel like I was living multiple lifetimes in just one day and then talking to a loved one ‘back home’ and they were sharing about the same journey that felt like they had been traveling for the past year.  I feel like I am living both of these at the same time.  The boys are growing exponentially and yet we are keeping appointments, working a little bit, playing at parks, and any other ‘everyday stuff’.  So if I put aside those ‘everyday’ ideas, Finn is turning over BOTH ways, he has 4 teeth (at 4 1/2 months!!!), he sits on his own with just a few wobbles, loves his toes, and is easy to smile.  Liam is running EVERYWHERE!  We have visited with the preschool he will transition into in August, and he has entered into an intensive feeding therapy at Phoenix Children’s Hospital.  Liam, Finn, and I are down in Phoenix 2-3 nights a week and Sean comes 1-2 nights a week because Liam has 1-3 appointments everyday Monday-Friday until July13.  We are staying at a Ronald McDonald House near the hospital, so we are living multiple lives in a single day sometimes.  

Our family has been working on finding ways to play together, with Sean’s work being out of town, during the week we cover the basics but don’t get to ‘play’.  Memorial weekend we found parks to play in, went for walks around Lynx Lake, and went to the Heritage Zoo.  Liam goes to the zoo quite often so we let him be the tour guide, his favorite stops were the playgrounds.  Mother’s Day is still a tender day for me.  Continuing to integrate my own journey into Motherhood with Liam and now Finn, and missing my mom, we headed north and spent the day at Bearizona celebrating a 24 hour old mountain goat and the cycle of life.  
In April we found out Liam had been approved after a year of gathering paperwork, trying to pay out of pocket, making phone calls, meeting with support coordinators, leaving messages for doctors to write letters of medical necessity, finding ways to continue what the feeding therapist suggested before she left town, the list goes on BUT what is important is that today Liam had his 4th feeding therapy session and second occupational therapy session.  The timing couldn’t be more perfect for Liam, he is hungry and ready to progress!  He has been given the okay to drop one tube feed per day this week!  Getting to witness Liam interact with other adults, and watching him make new friends reminds me to savor this time.  My little boy is growing up…FAST!

Finn has blown me away with his progression!  He continues to coo at us, the walls, and anything in his hands.  He turned over a few weeks ago and surprised both of us.  Now he is rolling over a couple of times, he hasn't figured out that rolling is a mode of transportation just yet.  He is starting to cut his 5th tooth so life has been a little harder.  Liam is an amazing big brother, he will get a blanket out for Finn and point for Finn to be on the floor.  Finn’s sitting abilities have strengthened having such an attentive brother.  Finn is a strong little brother since Liam can be a little forgetful and nibble on Finn’s toes and hand, bonk his head, and push him out of the way.  
I have been able to do a few massages and PSYCH-K sessions in the last couple of months, being able to pay attention to one task is such a luxury!  I have to laugh getting everything together to leave the house without the boys is almost harder than being with them the whole day.  We must look quite wild with all the bags, and accessories we carry around!  


As I pack up for the week, Mom’s presence is close encouraging and reminding me, ‘What an adventure this week will be!”  This week Mikki came down to help on Monday night so Tuesday we went swimming at my Aunt and Grandma’s condo and Wednesday Sean was able to join us for the Children’s Museum.  I am grateful for Mom and Dad’s lessons to find the adventure in any circumstance, though some circumstances were a bit more like a scary silly house!   Hopefully Liam and Finn can reap the benefits of these lessons and can enjoy this wild ride we are all on for the next few months.