The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10

 

Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?

 

Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.

 

Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,

 

Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.

 

4-3-2012

Category:

kids, Medicine, poem, Preemie, Special Needs, Trach, Twins

Happy Happy Birthday #6

My twins celebrated their birthday today. They woke early and had a busy day of:

  • Ice cream for breakfast
  • Opening presents
  • Testing new toys
  • Playing outside
  • Gettting reading to “party”
  • Having pizza, cake & ice cream with FIVE of our wonderful Home Care nurses- including 2 who are no longer working here
  • Getting to bed late

Let’s hope they sleep in in the morning. Be well & goodnite.

Category:

Community, Family, Memories, Nurse, Nursing, Preemie, Special Needs, Trach, Twins

Those I Love

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.

Category:

Big Bro, Family, foster children, kids, Memories, Momma making, Preemie, Special Needs, Trach, Twins

Month of YES

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”.

Category:

Environmental Challenges, Feeding, kids, Preemie, Special Needs, Trach, Twins

The Deli Drawer

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?

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Category:

kids, Medicine, Preemie, Special Needs, Trach, Twins

Kairos 1-20-12

A glimpse at our new adventure:

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Category:

kids, Memories, Preemie, Special Needs, Trach, Twins