The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

Best Laid Plans

Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.

We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.

No group photo got done until tonight but here’s the reality of my new year’s:

20130104-214852.jpg

20130104-214919.jpg

And one who worked SO hard NOT to smile…

20130104-215053.jpg

20130104-215110.jpg

20130104-215122.jpg

20130104-215134.jpg

20130104-215153.jpg

20130104-215204.jpg

Category:

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

“Parenting” as a Team Sport

Parenting, in any situation, is a tough gig. Parents work hard to create the environment they want to nurture their child to becoming a thriving, capable adult. This environment includes encouragement, love & guidance or discipline and parents work hard to balance the structure to meet the needs of both (all) parents involved in raising their child.
In my home there is only one parent- and you might THINK that makes things easier- except for a few things… Because my kids have complex medical needs, they have nursing care provided at home & in the community during many of their activities. You know how Dad may have a rule that’s SUPER important to him & he may feel like he has clearly defined that rule- until Mom is out with him at a cookout & lil Johnny is flat out performing “the act” while Mom laughs about it with her friends?? (or vice versa) Well, envision THAT times 5. Why 5? That is the number of people, in addition to me, who directly supervise my kids on a weekly basis.
I agree that what the nurses do for my kids is not “parenting” them, but they DO “toe in” to that “pool” I’ve crafted which is supposed to bathe my kids in enthusiasm, kindness, grit & motivation. Consistency is just not a word which describes this life.

Category:

kids, Nursing, Special Needs, Trach

A First Glimpse Undersea

Our family is so thankful to Massachusetts Eye & Ear Infirmary- yes, for their provision of life-saving medical intervention for my twins, as well as my youngest, but also for their continued caring & support to our family beyond the walls of their hospital. When I wanted to take my kids to the New England Aquarium, cost has always been prohibitive for a single Mom headed household of 5. I asked the hospital if they ever got passes for their patients and they found a way to help my children to experience the sights & sounds of their first adventure with undersea creatures. It was a HUGE hit with my children & a gift for me that we could go. Thanks again MEEI.

This slideshow requires JavaScript.

Category:

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

Photo Shoot

Even with our limited personal resources, our family has been thrilled about the opportunity to give back to the hospitals that give my kids such wonderful medical care. We went to a commercial shoot for Boston Children’s Hospital, where my youngest is featured at the close if the TV commercial, as well as appearing in the Boston Globe. It has been thrilling for her.

About 10 days ago, we were able to participate in a photo shoot on the Boston Common for Massachusetts Eye & Ear Infirmary. This hospital performed the life-saving tracheostomy placement for my older daughter & have provided skilled ongoing care & airway/ neck surgeries for each of my 3 youngest. Here is a glimpse at the fun we had that day. We can’t wait to get the pro shots!

This slideshow requires JavaScript.

Category:

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

Cellulitis

If there were not enough reasons for us to stay mostly inside this summer, we can add another: cellulitis. Youngest got bit by a bug on her arm and it swelled up quite a bit pretty fast. By the next day, about half her forearm was swollen and there was a red patch 2.5 inches by 1.5 inches. It was itchy and she complained of pain but no fever and it seemed pretty stable at that size so we watched it on Friday. Saturday morning, she awoke a bit crabby. She sat down to eat breakfast and complained about her arm. The swollen area had doubled in size and the redness was spreading down into her wrist and up to her elbow. Made it to the Saturday pedi hours and got her on antibiotics, which finally seem to have gone to work as of today.

Good thing we have her on Vitamin D…

Category:

Environmental Challenges, kids

Blueberry

For some reason, today’s weather thought it’d be nice enough to allow a breeze, maybe even keep itself 70 or so. As I watched the cloud cover, it seemed complete, but not “dark & threatening”. The planets aligned & we also had no doctor appointments & PT was done by 10am. This, my friends, was a day of opportunity!

As soon as the PT left, I gave Trachboy the rest of his breakfast & ran thru the shower. I packed oxygen tanks, suction & prepped a cooling vest just in case Trachboy began to fade. I ran a 5mL saline neb to clear any junk from lungs & airways, dressed the 3some and headed for the back door.

We tried out our local farm & had hoped to pick some of the last strawberries but found that their remaining plants were a long walk & near deplete- thank goodness for the employee who let me know they might not be worth the walk! She recommended we try blueberry picking instead and gave us a wagon for Trachboy & his equipment. Trachboy rode in style while the girls “helped” me to pull him up the sloping hill. We arrived without injury or excess fatigue & got right to work.

We managed to get about 3lbs to purchase and I’d bank the kids ate at least half that much in the field. Trachboy was fatigued but happy to kneel with his oxygen tank & eat purple berries from the bushes. Youngest certainly ate at least twice what she kept. Trachgirl was the champion collector moving bush to bush, occasionally escaping our row, as she foraged for blueberries. All in all, it was a memorable success and we are all so glad the weather cooperated.

This slideshow requires JavaScript.

 

 

 

 

 

Category:

Environmental Challenges, kids, Memories, Special Needs, Trach, Twins