The tapestry of the life of a medically complex family

Archive for the ‘Trach’ Category

Chasing

My kids are 6.5, 6.5 & 5.2 years old. They have never been to a parade. They have seen Macy’s parade on Thanksgiving & a bit of the one’s on New Year’s but have no real concept that everyday people actually go to & SEE these things in person. Having preemies that include twins with trachs, and a 5 year old with her own respiratory issues, fall & winter & early spring are times spent hunkering down away from germs, versus being out attending events. Group activities like parades or fairs never make the cut as “worth the risk” when thinking about my kids vulnerabilities.

As we began talking about Thanksgiving, my son remembered the Thanksgiving parade we have watched the last few years. (We are not a TV-watching family. TV is an ‘event’ in our home- so fairly memorable.) He asked if the parade was going to happen on Thanksgiving again- perseverative question cycles are a daily occurrence. I told him that it would be on and since that day about a week ago, he has checked in about 3 or 4 thousand times on the topic. (Thank you Autism)

I checked our town website and found out WE have a Veteran’s Day parade & that it was early Sunday afternoon. It happened to fall between all the multiple medical treatments that make up our life as a family with 3 complex medical kiddos, and it seemed reasonable to delay lunch to make it happen. He & his sister’s were excited to be going to see their first parade.

We drove downtown because my kids fatigue levels are way too high to make a half mile walk. By the time we parked, packed the stroller, got my 2 weakest kids buckled in, it was very near time for the parade to start. Altho it was just a short walk to the firehouse, it took us until 1:01p to get there. Yep. ONE MINUTE after the parade began. They saw the veteran’s on motorcycles and the fire engine that were the tail end of the parade. We tried to catch up- I put my other child on my shoulders so I could walk briskly while pushing the other 2. They saw the backs of our high school marching band…

Basically, my kids ALMOST saw their first parade this weekend.

But they enjoyed themselves anyway.

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Category:

Community, Family, Memories, ROFLcopters, Special Needs, Trach, Twins

Sandcastle by the Sea

My kids have been to the beach a few times. Sand and water are not a great accompaniment for a trach so we typically go only after it has rained- to make the sand wet and less of a flying powder. Also, my kids have put their toes in the ocean but we give it plenty of distance because we know how each wave can be bigger than the last. Today we went to the beach to remember our friends who have died- to “send off a wish” as my youngest calls it. To remember and to hope for peace for our friends’ families, while creating some peace for our own.

Today was perfect beach weather for my kids: cool enough & cloudy enough to keep crowds of people away, moist sand after a night’s rain, cool damp air to enhance the moisture of their breath into their lungs. We parked the oxygen tank, found “wishes” and threw them into the sea. The waves covered the bottom of their boots and frightened Trachboy, so we retreated to the wet sand and built my kids’ first ever sand castle. It was a wonder to them and magical for me- I’ve never felt that comfortable with all that sand and water with my trachees. We needed today’s magic to bolster us through the week ahead. Hoping the peace stays with us a while.

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Category:

Family, Memories, Preemie, Trach, Twins

A Second Helping

This weekend we got to go to pick apples again. It was a different event than the peaceful, leisurely outing of last year. Apparently, every weekend is a festival weekend at the apple farm. This weekend was also their community craft fair which made things EXTRA BUSY.

The highlights were the 3some enjoying their first “tractor ride” on a trailer pulled behind a red tractor – the DUSTIEST experience of my trached twins’ lives- & picking a GIANT bag of apples to bring home for making Gallettes and drying to eat for snacks. We will be needing to add some recipes to our repertoire in order to use all these up! Feel free to add some recipes in the comments- I can usually modify things to meet our grain-free diet. Enjoy our photos.

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Category:

Community, Family, Memories, 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.

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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!

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Category:

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