My twins celebrated their birthday today. They woke early and had a busy day of:
Let’s hope they sleep in in the morning. Be well & goodnite.
It’s been hard to keep up with blog prompts for this month of blogging every day! Today they want to know who I love- well, I’ve already written so much about them I can’t imagine you’d be very surprised. My kids are the most wonderful people to ever happen to me. 🙂 My oldest is a terrific emerging adult. He’s back in college and working his way into a routine with it. He still makes me smile whenever he Skypes his younger brother & sisters – chatting with them about nothing, the objects they can see in the room behind him or answering all their young sib questions.
The twins are doing wonderfully well. Health is still an area of challenge but I’m able to keep these loves of mine home with the help of some terrific home nurses. Growth is a slow & lengthy uphill battle, but they are happy & developing. Can’t wait for their sixth birthday in 2 weeks!
My youngest is a love all her own. She is compassionate & caring and my companion on all errand runs. She adds a level of noise and energy to the playroom. I love her laugh and smile. My kids warm my heart every day.
Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.
I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.
My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.
Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.
Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by “everything”: they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906…]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.
When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.
Here we are. February 4th. The day after our nutrition appointment where they asked about my thoughts on placing another GTube. My thoughts: FEAR. TERROR. TORTURE. My son experienced an incorrectly place GTube that no one realized was blocking the exit to his stomach- for 4 YEARS!! He experienced constant, sustained, SEVERE pain that took him until 3.5 to be able to communicate. We have a little over a month until our GI appointment where they will bring it up again. We have work to do. We need new strategies. This post is going to be about “Step 1”.
Step 1 for us is going to be to try to make food in our house more about “yes” & less about force & control. I know for those who don’t have a child with special developmental & medical needs, you are thinking: “Force & control? That’s MESSED up!” And you’re right, it is… But it’s a long & winding “Failure to Thrive” road that gets a family like ours to this place- & we need your support & encouragement, not judgment.
As my 27-week preemie trached twins head to their 6th birthday in March, they continue to have slow growth & development. FINALLY my 4.5y.o. has a “green light” on her exit from the “slow growth & gain” train. Our February of “YES”.
We have 25 more days of February & we are going to try being more of a “yes” family with food.
YES you can have a banana after waffles at breakfast
YES you can have a couple ounces of water first thing in the AM before hi-calorie Peanut Butter Formula
YES we can talk at the table and try to still get food in
YES you can have a lo-cal orange as your breakfast after finishing PBFormula instead of sausages which give you more calories at your “best meal of the day”…
YES to getting milk & food at the SAME TIME vs. “Fluids first, food after”
YES to veggies & meats delivered at the same time at dinner vs. “Meat first, veggies after” (My kids are the ones who see salad as a dessert food)
My goal in the “Month of YES” is not weight gain- that would be nice, awesome, but not my goal. My goal is changing the culture if meals from “torture to be endured” to … anything less noxious- something I don’t yet have words for. Wish us luck. Wish us “YES”.
If you’ve read much of my blog, you know my kids & I follow a special diet. We eat organic & homemade, without grains, starches or complex sugars. The Specific Carbohydrate Diet has no processed food of any kind on it- no “deli” items come to mind that need be in our fridge- & good thing.
Currently our deli drawer is housing about $25,000.00 worth of medication. The twins new regimen for inhaled (nebulized) medications includes Tobramycin. TOBI is a string antibiotic that kills the types of bacteria kids with trachs tend to grow out regularly, and occasionally in large enough populations to cause actual illness. Our pulmonologist wants to be pro-active & avoid these infections for the twins while we work to avoid other viral illnesses that might land us in the hospital again this winter. Yay for proactive healthcare & yay insurance.
What’s in your deli drawer?
Basekamp Laundry Mountain 