As their second birthday approaches, some have been asking us what they boys would like for their birthday. Truly, the boys are very blessed with so many toys but some things they would enjoy are:
Henry would love any of the Little Tikes play equipment found at Walmart or Walmart.com such as the Little Tikes indoor/outdoor first slide, adjustable basketball hoop, T-Ball set, and similar active play options. He’s a kid who needs to move, climb, push, throw, and repeat. He also, of course, is obsessed with anything Baby Shark and has developed a strong appreciation for hats. He would also love any kind of flexible race car track especially as he has discovered that his foam climbing blocks can be repurposed into launch ramps for Hot Wheels. Henry is transitioning to size 3T shirts and pants and growing into a size 6 toddler shoe. If you’re considering a hat, please size up, the boy has an impressive head circumference.
Frankie would like any toys to help him work on his pincer grasp and putting toys in and taking out of containers. He would also love a more traditional swing to hang up in our living room. He enjoys the Johnny Jumper and the sensory swing, but he’d love a toddler swing. He also likes toys that bounce and make music that stand up a bit taller so he can walk toward them in his gait trainer and anything with large buttons he can push easily. He is wearing a 4T shirt size and 24 month pants. He would take a size 2T in rompers or onesies/body suits. I know it’s confusing; dressing with his ostomy is complicated. He is wearing 0-3 month shoe. Tiny feet!
Both boys love their tonies boxes and would love to add Tonies to their collections.
Beyond birthday wishes, here’s an update on how the boys are doing.
Frankie is spending more time upright in his gait trainer, learning what it means to put weight through his legs. It’s been so exciting to see the neurological conversation between brain and body developing. We are still on only IV nutrition (TPN) right now while we work on getting a second opinion from Children’s Nebraska. Henry is starting speech therapy. His comprehension is advanced but he doesn’t have the words to communicate back with us. We’re hoping this will help him a lot. He’s also starting to visit the 2yr old classroom at daycare to get him ready for the transition so we hope his classmates will model language skills that he’ll pick up.
I’ve been working with the patient advocate and leadership at the children’s hospital to bring attention to the gaps in services within the GI department. At times it feels like shouting from the rooftops just to be heard, but recently I was told they’ve formed a council of operational and clinical leaders to conduct a comprehensive review of the department. My hope is that this leads to meaningful changes, especially hiring a dedicated social worker for GI. Families like ours need help coordinating care when a child’s primary diagnosis is gastrointestinal but their needs span multiple specialties. Right now, that coordination largely falls on parents, and there are only two providers seeing TPN-dependent children twice a month, which simply isn’t enough for the level of complexity involved.
Since my “Mama Bear” hat was already firmly in place, I also began working with City Council regarding accessible equipment at a local park that is being redesigned. One of the biggest challenges is helping decision-makers understand that accessible and inclusive are not the same thing. A space can technically meet ADA requirements and still not allow a child like Frankie to meaningfully participate. I’m advocating for design that allows children with mobility devices not just to be present, but to move, play, and be part of the experience alongside other kids.
Thank you all for loving these boys so well. We’re looking forward to celebrating two very different, very wonderful little humans.
Amanda
