Henry's new springtime favorites (though not complete): to visit water fountains, to play with toy cars, to play in his sandbox, to watch us fly kites, to take walks (anywhere- but mostly to the park), to play in his room, to snuggle his (Mr.) Bear, to play with his trains, pointing out airplanes or helicopters in the sky, bath time/monsoon splashing, eating "snacks" of a wide variety, ice cream/shakes/cupcakes (might have to start limiting these soon!), finding new animals in the backyard (see below caterpillar picture!), drinking anything out of a straw (especially chocolate milk!), bandaids (not the ouchie, just the bandaid), naming shapes, naming letters, naming numbers, dogs- especially ones that lick his face:), and playing with dinosaurs!
Sometimes in the morning we'll hear him talking over the monitor and listing his "demands" for the day which include many of the above mentioned. We're encouraging independence and helping Henry tell us what he wants these days... and he seems to be all for it! Julie and I are attempting to balance this independence with drawing boundaries for Henry as he is well into his "second year" (a.k.a. terrible twos). Seems like he's grown up in a whoosh as we quite often find ourselves saying "did he just say/do that?!?!" while scrambling to address all these teachable moments. Though Henry can be shy at first, he is definitely not shy about expressing his wants! We're very mindful of our tendency, considering all Henry has been through, to be more lenient with these boundaries but know how important consistency is at this age. Seems like all the parenting books you read never really prepare you, but we're doing our best! I'm smiling right now thinking of a specific time when Henry was obviously testing boundaries- looking at us and doing something we just told him not to do. It's not always funny, but is it always amazing how quickly the "next steps" come in all this growth and development. Cousin Leo (who is 6 months older than Henry) usually prepares us for "what to expect". See silly picture below:) I know all these monotonous parenting lessons will continue to be a challenge as Henry grows, but it's a balancing act we're prepared to support each other through (giggles included).
Julie has eased into her transition from weekday "full time momma" shift to weekday "part-time momma" pretty gracefully. From an outside perspective it seems like she's no less busy... picking up trainings and attending meetings at work, conquering yard beautification/project herbal garden/backyard clean up tasks, in addition to being Ms. fix-it and an organizational guru inside the house. It's been quite an adjustment for her letting her "Momma J and Henry time" get cut in half, though it helps that she can be involved in school activities like field trips, picnics, etc. We're hesitant to make big schedule changes now (shift Julie back to weekday shifts vs her weekend alt position in the ICU) as we expect Henry to catch the occasional bug from classmates and really want to make sure this school/schedule is a good fit for him. I'm continually amazed by her strength. Julie has been fortunate enough to have the ability to work an alternative shift schedule when we needed it. But, as a result she has shouldered most of the responsibility of coordinating numerous doctor's visits, OT, PT, speech, dietitian appointments, playdates, etc over the last two years (who says being a mother is not a full-time job!) in addition to holding a full time job on the weekends. I don't praise her enough for this, and the pay/benefits of being a "stay at home" mother are definitely not reciprocal to the time and energy poured into the "job"... unless hugs and kisses are counted. Then we're millionaires!! Mainly, Henry and I are very lucky Momma J is as amazing as she is and I am definitely blessed to have her as my partner throughout this journey (last of the Mother's Day mushiness- sorry!).
We met with the Kansas City school district rep (along with our First Steps case manager and therapists) and though scary, it was helpful in planning for the transition of services at Henry's at his next birthday. The meeting was in effort to discuss what services might be available for Henry and what schools in our area these services might be provided in. I say might because these options are all dependant on funding and city planning for the next school year. After the meeting we were confident that 1) we don't plan to make any changes at this time as far as what school Henry attends, 2) Henry can continue services he might qualify for at a school in the KC school district as long as we can bring him to the school designated to provide the therapies, and 3) we will schedule testing for him after the schools re-open in August. To be frank the meeting seemed only to create more questions for us as no specific plans were discussed other than testing. But, the above three points brought us comfort and direction. It will be an interesting transition that we expect will have its challenges. Thanks goodness Henry has already taught us to be pretty good advocates for him already:)
On a side note, Henry was visited for the last time by our dietitian, Dana, last week and confirmed some great news. Henry is now in the 10% in weight and 20% in height!! This may not seem that significant for most folks, but for our guy it's HUGE (pun intended)! Pre-surgery Henry was at 3%. (just last October), so Dana made the decision that we could "graduate" from her services. It was bitter sweet, and weren't really able to relay all of our gratitude for her love and support. Dana has been working with Henry since he was three months old, gave us a TON of suggestions and support when Henry struggled to eat and gain weight as an infant and has guided us since then during some major ups and downs. Always with a smile and compassion:) She will be missed, though always remembered as Henry continues to grow!
We had a wonderful holiday weekend, were able to spend time with family in St. Louis and took our first train ride! It very was relaxing, as always, and I'm reminded of how togetherness and friends and family seem to literally fill me up. It's a blessing we don't take for granted:) I hope you all had a wonderful weekend and are ready for some exciting summer months ahead!
Much love,
Kate, Julie and Henry
p.s. Early post is for you Annie McKay and the Hank the Tank fan club!!! Thanks for your love and dedication:)
No comments:
Post a Comment