{What Happened?}

Before yesterday's appointments, Oliver was tired and didn't want to wake up...he hasn't been feeling nor sleeping well.  {It is a terrible thing to have to wake a sleeping child....to take them to yet another Dr's appointment.}

Before yesterday's appointments, Oliver realized we were bringing him to a Medical appointment about the time we drove into the parking garage, and he began to whine & cry in protest. {I do not ignore these protests; I can SIGN, "NO HURT. I PROMISE" again and again, to attempt to reassure him....but only if &when that's true! Otherwise, I'm left with just apologizing for what's about to happen!}

Before yesterday's appointments, I turned RIGHT directly in front of the GRUMPY PARKING GARAGE ATTENDANT {instead of dealing with him again and trying to get him to let us through "his" gate to the EMPTY upper levels} and went down the down ramps and found an open HANDICAP PARKING SPOT right by the elevator...all without any stress from an UNCARING STRANGER.

Before we checked-in for yesterday's appointments, Oliver needed a diaper change- no small feat to accomplish when said child is almost 6 years old and the Wall Mounted Diaper Changing Station is obviously not made for a child this size/weight {much less one attached to Oxygen by 14ft of Tubing and being wheeled around in a Stroller in lieu of a wheelchair}.

After we checked-in for our first appointment yesterday, we sat in the waiting area which was rather full of other folks waiting as well.  This is when we might as well have been wearing a SIGN ON OUR CHEST that reads:

"YES, We are obviously DIFFERENT" because:



Oliver was, as usual, loud though he didn't say a single word.

Oliver and I communicated in Sign Language and laughed a lot. {I think people "see" that we understand one another.}

Oliver's Nurse fed Oliver through the G-Tube in his abdomen, as usual, he did not put any food into his mouth {This was unnerving enough to the Gentleman 2 seats away from me, that he got up and walked away for a while.  When his wife and daughter came out from an exam room door, I realized that he himself was the father of a special needs child...yet he was still uncomfortable being near my child!}

Oliver did not attempt to watch or interact with any of the people in the waiting area.

None of the people in the waiting area attempted to interact with Oliver.

Every minute we were in that waiting area, people were WATCHING Oliver & us...and some even STARED, all without regard for our feelings.  {Hallways & Elevators are popular public places for this to occur also....really, just about EVERYWHERE we go}

We visited this same waiting area twice yesterday, for the same experience both times.  Actually, I take that back....the second time, we were ignored!  Yes, IGNORED...by the young lady CHILD LIFE VOLUNTEER who was sitting at the children's table doing crafts, coloring, etc ALONE and simply did not approach Oliver at all {Sighs, I think she is the ONE PERSON who was SUPPOSED to approach Oliver!}

After our appointments yesterday, Oliver's Nurse and I decided to grab some food at the McDonalds housed in the basement of the big city hospital and then head home.  Neither of us had anything to eat yet. It was 4pm. {I could feel my blood sugar dropping and I was shaking-No way to drive!}

After our appointments yesterday, it was 1.25 hours until we arrived home due to distance and traffic and that was actually making GREAT TIME!

After our appointments yesterday, Daddy drove up in the driveway right as I turned the engine of the van off {HUGE sigh of relief}

After our appointments yesterday, it took 5 trips from the van into the house to unload Oliver and all of his oxygen, assorted equipment and supplies and get it all back into the house.

After our appointments yesterday, Oliver's Nurse stayed 45 more minutes to unpack used/dirty syringes from our trip, assess Oliver one more time, and finish her charting {then had to leave as each nurse is not allowed to work more than 40hrs in a week}.

After our appointments yesterday, we came home without any update on Oliver's Pulmonary Hypertension because his test results were not ready by the time we saw the Doctor.  We were left waiting for a phone call.

After our appointments yesterday, Ian, Evan, and Ilse all wanted & expected to have all the attention, love, and devotion from BOTH Daddy and I...that they also DESERVE to have.

After our appointments yesterday, we still needed to:

Buy MANY special organic food items for Oliver's special diet
Make Dinner
Do Laundry
Keep Oliver's Meds & Feedings on Schedule
Bathe & Do the Evening Assessment for Oliver
Check Ian, Evan, and Ilse's School Agendas
Make Ian, Evan, and Ilse's School Lunches
Feed Eleanor & Joey, our Greyhounds
Monitor Homework & Flute Practice & Nightly Reading
Contact Oliver's Pediatrician {who had not called me back yet}
Call for a refill on ONE of Oliver's medications {a specialty pharmacy med}

and probably countless other chores and errands COULD have been added to this list....but I was just too exhausted to accomplish much!  Daddy did great, keeping Oliver's schedule of meds and feedings going for the rest of the evening.  I did as much as I could muster up the energy for.

Mostly, it went like this:  The older children made their own lunches and it was a DIY dinner!  Ilse practiced her Flute & Read after she showered.  All Homework was done and School Agendas were signed. Oh yah, Evan fed the dogs!  Other than that, everything else that could be was put off until TODAY!



Today...we are all back at it again.

Daddy organized Oliver's Large and Portable Oxygen tanks {empty vs full} and called Ollie's Durable Medical Equipment supplier with our order for today & reminded them that our Supplies are due for delivery today as well {delivery of Oxygen is twice per week; Supplies are once per month}

No Medical appointments today; just the regular routine for Oliver's meds & feedings at home.

Deaf Education Tutor came to the house for Oliver for the typical 1hr school session.

I ran some errands.

I made another call to Oliver's Pediatrican's office {they are RE-SENDING the message to the Doctor to call us back, so I am still waiting!}.

I cannot carry in all of Oliver's food items from the van {2 torn Rotator Cuffs} so Evan was elected for that duty around 3pm.

I received the update call from the Nurse Practioner who works on the Pulmonary Hypertension Team we visited yesterday.  Results have been disseminated to Daddy via cell phone call and verbally relayed to Oliver's Nurse; I asked for a Report to be faxed to us as well as to Oliver's Pediatrician.   Results are that there have been no changes, good or bad. For now, we keep staying the course {Sighs}.  We go back again in 3 months like we have been for almost 2 years now.

I will be taking Ilse to Flute Practice at a Band member's house...she has an Ensemble Contest first thing tomorrow morning & the girls need to be prepared {they've practiced probably 20 hours together!}


Ian & Evan have both checked in with me...and gone off with their friends &/or cousins for the evening. FUN for them, they DESERVE it!


Oliver is RESTING on the couch in the Family Room....not sleeping {He is doing a lot of teeth grinding, so he isn't feeling well!}



Next week, more Medical Appointments are on the calendar.  But, I think we will try to kick back this weekend and relax at home; Try to not let Ollie's SINUSES get any worse & HOPE we didn't catch anything from our hours at the big city hospital yesterday.



{Have a great weekend everyone!}


-Reneé