Blessings for Benton: A Reflection on our Amazing Son

Love at the park

As I get closer and closer to my due date with Little Lady, I have been pausing to reflect on the amazing blessings our family has been given. Each day Benton brings happiness to everyone around him with his joy for life, eternally sunny disposition, natural mischievousness/curiosity and unfaltering determination to overcome obstacles. I am constantly amazed by my son and I know others around him who know his fragile start to life are in awe as well.

Trying to read and building towers of blocks!

Such an explorer

Making a mess and getting mischievous

Some days I look at Benton and think to myself what if he had passed away during those terrifying times his first Christmas. What if this joyous little boy hadn't been able to overcome the seemingly insurmountable obstacles and get to the place he is today? What if kangaroo care and a mother's love had not pulled him back from the brink of death? What if our miracle boy wasn't here today? Not only would I have missed out on loving and parenting the most amazing little miracle....but I would never have had the chance to see his personality, his genuine happiness and joy for life. Each day I thank God for miracles. Benton is a miracle and I am so very blessed that I am fortunate enough to get to watch him grow up, explore and learn about his world. I can't imagine what my life would be like today if we hadn't been blessed with his life and for that we are forever grateful.

Fun with Auntie Breton and Uncle Chris

Brisk walk around the neighborhood

As I look at my beautiful and amazing son, I know that his road has been challenging, but each day he continues to overcome obstacles and surprise everyone with his wonderful progress. Here is an update on Benton's medical progress:

Cardiology - At Benton's most recent appointment his pulmonary hypertension looked well controlled and the doctor said we could start weaning his sildenafil medication from 4ml to 3ml! The plan is for us to slowly but surely decrease the dose until he is off this year!
Pulmonology - Benton's pulmonologist said we could begin to wean Benton's albuterol inhaler once cold and flu season was over! In addition, Benton has been cleared to join playgroups and little classes once cold and flu season is over; however, we are still not cleared to put him in daycare.
Opthamology - Benton's eyes looked good and he doesn't need glasses. He had slightly raised pressures in his eyes which could be genetic and they will continue to watch it.
ENT - Benton's ear tubes looked good in his post-surgical follow-up. He also passed his hearing test which is great as this means the tubes have made a difference!
Occular plastic surgeon - Benton's eye tumor has been removed and has healed beautifully. We were formally discharged from these recurring appointments! The first doctor we can successfully take off the list :)
Physical Therapy - Benton is a walking fiend and loves to walk all over the neighborhood and park. Due to him walking a bit on his toes his physical therapist has recommended higher orthotics for the time being to encourage better form while walking - so we plan to be in these higher braces for 3-6 months. In addition, Benton was written an order for a SPIO compression vest which should help increase his core strength.
Occupational Therapy - Benton's fine motor skills are improving by the day and his favorite activity now is puzzles! We are currently working on identifying colors and stringing beads together.
Feeding Therapy - Benton's feeding is just amazing now :) He no longer requires calories via his feeding tube - you heard that right he takes all of his calories by mouth!!!!! Now we just use the feeding tube to supplement his liquid (water) intake. We have also been working on soft solids such as stewed fruit, tiny bites of hot dog/dumpling/ravioli and puffs. Each day we are seeing more and more improvement and hope that one day Benton is eating an age-appropriate diet!
Speech Therapy - Benton can now make the following sounds: Ba, Ma, Moo, Bow-Wow, Da, Ta, Uh, and Ahh. He says Hi and Bye and loves to chase the dogs around yelling "Bow Wow Bow Wow". He is also saying word approximations for ball, please and up. For a kid that barely made any noises in 2015 his vocabulary has vastly improved. We know he has a long way to go, but we are encouraged by his general babbling and his awesome receptive language. Benton is easily following two-step commands and can identify animals, modes of transportation and shapes.

Trying ice cream for the first time!

Spaghetti sauce!

As you can see from the list above, Benton is growing in leaps and bounds. Not only is he making progress across so many of his therapies but he no longer needs calories in his feeding tube and currently is 31 lbs and 36.5 inches tall (in the 75th percentile). Every day I look at Benton I see a miracle. When the doctors look at Benton they are so impressed with his progress in spite of his early circumstances. Benton was given a 5% chance to live and was almost assuredly going to have moderate-serious disabilities, but he survived and doctors say that he will grow out of his delays without long term disabilities. It is true that miracles happen. Benton is living proof.

Lot of love in our family snuggle

Making silly faces

As I embark on our next chapter as a family of four I thought it prudent to reflect on the constant blessings we have been given these past 2 years. Our family is incredibly fortunate and I can't wait to make Benton a big brother in less than 2 weeks :)