Maybe You Were Curious...

I've been thinking a lot lately about the way things used to be, how they've changed over these last {6 years} with a Special Needs & Medically Fragile child in our family, and contemplating where we are today.

We are often asked {interesting, probing}questions, been given {the look} of confusion by people out in public, and all too often been on the receiving end of comments like, {I just don't know HOW YOU DO IT!}...Well, here are some of the changes we've been through to help explain OUR LIFE to YOU: 

• {Sleeping Arrangements}

Before Oliver: Our home was a 3 bedroom home & Hubby and I shared a Queen sized bed in our own bedroom, just the 2 of us. Our oldest boys shared a rather large Bedroom and our only daughter had the smallest bedroom all to herself.

When Oliver came Home: At 7mos of age, we attempted to have Ollie's crib, oxygen, medications, and various medical supplies & equipment housed in our bedroom with us, as we only had 4 hours per day Home Nursing {mostly NO nursing!} and it was just too overwhelming to move ALL of his stuff around the house day & night. At about 1 yr of age, we moved EVERYTHING OLIVER to the Family Room and this is where Hubby & I pulled out a Twin sized mattress & bedding EVERY NIGHT and put it away EVERY MORNING... and slept in the Family Room with Oliver for about 2 years! Shortly after Oliver turned 3 years old, he started to walk, we had barely moved him back into our bedroom & into a TODDLER BED of his own when our home underwent MAJOR CONSTRUCTION. Oliver, Hubby & I were then sleeping in our Living Room for about 7 months.

During these years, all of our older kids had their same bedrooms as before.

Where we Sleep Now:  While construction gave Oliver a bedroom of his own, multiple major surgeries over the course of 6 weeks brought him back into our Queen sized bed...this time in a new, larger Master Bedroom.  With the addition of our 2 Greyhounds, Eleanor & Joey, we have upgraded to a King sized bed recently. All attempts to get Oliver back into his own bed {even bringing his bed INTO our room} have failed to date! So YES, that is 2 Adults, 1 Special Child {w/Oxygen Tanks, Monitors, Medications, and Supplies} and 2 Dogs in our Master Bedroom; Together in one King sized bed.

Our teenage boys still share the same large bedroom with new paint & upgraded doors. Our now teenage daughter has moved into what used to be our bedroom, complete with girlie paint, upgraded doors, and a Justin Bieber wall! {swoons}

• {Home Decor}

Before Oliver:  Our home was a collection of all things OLD; Antiques, Family Heirlooms, quirky pieces decorating our Tri-Level Home. We had white walls with lots of color in our furniture and decor.

When Oliver came Home: Our home remained decorated the same, however all candles were thrown out or put in drawers, anything miscellaneous in our Bedroom & Family Room were boxed up and moved to storage to make room for Oliver's Oxygen Tanks, IV Pole, Feeding Pump, Heated Cannula Set-up, Therapy Items, Feeding Needs, Medications, Medical Supplies, Therapists, Deaf Tutor, Private Duty Nurses 12hrs/day, etc. Somehow, we were able to still BE a family and enjoy one another as a family of 6 amongst ALL OF THAT taking over, but it was tough and getting near impossible!

What our Home Decor is Now: We are still surrounded by ALL THINGS OLD and ALL THINGS OLIVER but construction brought us about 1300 more sq ft. to spread out and be organized in. Our addition brought Oliver a Medical Supply Room in addition to a Therapy/Fitness Room for our entire family to use.  This space also houses Oliver's home School Room, an additonal full bathroom, and a general Work Area for his Nurses.  Upstairs, our addition brought a HUGE Master Suite, Oliver's Bedroom, and renovations to THE 3 TEENAGERS bedrooms. Our 3 teenagers also enjoy a Game Room on the upper level.

We still cannot have candles of any kind in our home, Oxygen Tanks dot at least 3 to 5 rooms of our home, permanently, and almost every window posts warnings to Emergency Personnel that there is Oxygen on premesis and lets visitors know that Smoking is NOT ALLOWED in our home {I know, a No Brainer you'd think...but you'd be mortified if you knew what has gone down!}

Additionally, our home is still inundated with visitors that are specifically for Oliver and his needs: Respiratory Technicians deliver Oxygen and Supplies regularly; Home Tutoring occurs M-F throughout the regular school year and for 4 wks of the Summer as well- all by a Deaf Educator; Therapists come and go 4 or more times a week for ST, OT, and PT; Private Duty Nurses fill 12 hour shifts during the daytime, mostly M-F with the occasional Saturday; Various Medical Supervisory Personnel also visit our home at varying frequencies to assess Oliver and his level of care in order to make their agency's required status reports.

Our 3 Teenagers have varying levels of social interaction at home now{significantly increased from pre-Oliver days, due to well...them becoming TEENAGERS} with our constant supervision {because someone always has to be home with Oliver} and with the continued concern that Oliver's healthy environment is being maintained {we still have to ask & make sure their friends ARE NOT/HAVE NOT BEEN sick}.

Notice I have not addressed Adult Visitors...that's because we don't have any! Seriously! All visitors are either Teenagers or Medical/Therapy/Educational personnel. This is a change too. We used to have Adult Visitors...Family and Friends. That became Family Only once Oliver came home and now is at ZERO ADULT VISITORS!

So, there you have it! I've pretty much summed up {HOW WE LIVE} and maybe next post, I can tackle {HOW DO YOU DO IT?} by sharing some of the ways we've grown in the areas of Medical/Home Organization, Getting out of the House, and Managing Private Duty Nurses in Your Home...over the YEARS!

Have a Great Weekend, everyone!

-Renee'