Appointment Summer

It does seem as if life with Riley is all about schedules and appointments.  The production of planning, getting through the next activity and arriving at the right place and time, in the reasonable mindset, wear us out.  I find myself procrastinating with each line on my list for the day and admittedly some of the lines are left unmarked.

Riley's schedule is packed as Summer ends very soon as Lee County returns to school on August 8.  The boys and I have spent a lot of time traveling and hanging out in waiting rooms.  These events wear my patience thin with the various people we encounter.  It takes a great amount of energy simply to show up somewhere with Riley that finding us easily disrespected vexes me (See April Fools in a Doctors Office or My Fragile Child).

The neurologist clinic appointment had been canceled on us and rescheduled to a later date and time without consultation.  I had asked for a time change if possible to an earlier hour and was told Riley could be seen at 8:20 am.  We arrived with moments to spare and watched three ambulatory patients arrive after us and leave before we were called.  I questioned the nurse on one of her pass through's to make sure she was aware Riley was available, she assured me she did.  At 9:20 am we were finally called back for the same nurse to take our stats.  Unhappily, I paused at the scheduling desk reminding the woman behind the computer of our allotted time.  Only then did she notice, but did not care, that we had been booked at 8:20 at the same time as another patient.  My voice raised and our Neurologist rescued her by dispensing with our stats and seeing Riley immediately.  The doctor has no fault in this and I immediately felt guilty for complaining.  Dr. Osterman has been nothing but kind, considerate and gentle with us.  However, this treatment by office staff has become all too common everywhere we go.  Do some see a child in a wheelchair and feel that child's time is somehow of less value... he will not complain, he does not have a playdate planned and mom is simply a state at home mom with no value to society.

The week continues with lots of unreturned phone calls and planning to finally schedule a Neurosurgery appointment for this coming Monday.  A CT and shunt series at a radiology office.  The dreaded Ophthalmology has been delayed until Fall.  All of it adding to the stress of going through these motions to keep all parties placated in the oversight of Riley's care.

Wednesday found us at the dental school, for both boys for teeth cleaning.  The school has been a wonderful way to care for Riley's needs.  The young dentists are undeterred by the special needs challenge and interested in his health as opposed to some of the long-term professionals we have tried in the past.  Hopefully no one is offended by my summing them up so disinterested in Riley, I spent my early years of work in my fathers' Oral and Maxillofacial Surgery Office and learned the importance of respecting the patient through observing my Dad over the years.   I maintain a "cheat sheet" of important information which I have shared with every medical office Riley enters.  There are no secrets to Riley's condition.   Upon being called back for our appointment, a previously unknown Sergeant had a copy of Riley's cheat sheet up on the screen for review.  "Any changes to his condition?," she demanded.  "No, pretty much the same," was my answer.  Then I added, "he seized on Sunday."  This met with a reprimand that they must know everything right up front and she began to argue with me.  We had only just begun the conversation.  Here she was with full-disclosure right in front of her and she wants to yell at me.  She started to go down the road that he could not even be seen that day having had a recent seizure.  I was taken aback.  Perhaps special needs do not have the right to full care, it is simply too risky for medical professionals to work with them?  Maybe she does not comprehend special needs or the explanation of "seizure disorder" that I had put directly in front of her. Before the confrontation escalated, a familiar face appeared, Dr. Magher, Riley's first dentist in that office before she graduated.  She had returned to be one of the leads in the office and she was a very welcome and reassuring presence.  The Sergeants' concerns were left behind and Riley received his x-rays and cleaning which he tolerated beautifully.

Some of my frustration with all these appointments is due simply to navigating everyone we encounter.  So frequently, people block our path, quickening their step to be ahead of us or allowing children to stare to the point of causing us discomfort.  There are individuals who cross our path with consideration.  Those of you who do this, I notice and I remember  and appreciate your gesture no matter how humble.  I remember the tall and handsome twenty-something Asian man tripping over his own feet when Ronan reached the door of McDonald's off Daniels before him.  He could not help, but the intention is enough for me.  I remember the sixty-something gentleman passing by during the wheelchair unloading at NDIC asking how he could assist, this is a procedure that is difficult to explain, but the desire to help warmed my heart.  Those small moments are few and far between, but they stay with me.

Robert, Burt, Heidi and Pick A Spot bring Riley around to pose for the camera.

Ronan waits patiently.  Note: both boys have added to their tie dye collection.

Thursday brought us back to Naples Equestrian Challenge for Riley's lesson.  Currently, there are plenty of volunteers, likely this is thanks to the high-schooler's fitting in their community service hours over the summer which gave me the chance to snap some shots of Riley aboard Pick A Spot.

 Taking a moment from the barn, volunteers rest in the sliver of shade. July 28, 2011 4:30 pm.

 

Better go now and do some more planning.

Anyone else out there have appointment stories to share? I thank you for stopping by.

We are all special... by Stacie Wiesenbaugh

Survivor Weekend/Summer Sidewalk Sale | Celebration Town Center, Florida

Survivor Weekend/Summer Sidewalk Sale | Celebration Town Center, Florida

Give Kids the World:

Our Story:

The story of Give Kids The World begins with a little girl with a wish and the desire of one man to make that wish come true.

The little girl’s name was Amy. Amy had leukemia and one wish – to visit the theme parks in Orlando. To facilitate Amy’s wish, the request of a complimentary stay was made to a respected hotelier. As he had done many times before, the hotelier gladly obliged and Amy’s wish was that much closer to being realized. Sadly, the remainder of Amy’s travel plans took too long to arrange and her wish was never granted; Amy had passed away. Time simply ran out.

This unfulfilled wish inspired a man, the hotelier, to make a vow that no child in need would ever be failed again. That man was Henri Landwirth and his desire to ensure that Amy’s story would never repeat itself is where the story of Give Kids The World begins.

The Village:

Landwirth enlisted the support of colleagues in the hospitality industry, including our world-famous theme parks, to assist him in bringing these special families to Central Florida within 24 hours if need be. He called the project “Give Kids The World,” because that is just what he intended to do – provide memorable, magical, cost-free experiences to children with life-threatening illnesses and their families.
As the program expanded and the number of families continued to grow, it was apparent that Give Kids The World would need to create a place that could better serve the special needs of our families. The gates of Give Kids The World Village opened in 1989.

Today the Village is a 70-acre resort complete with over 100 villa accommodations, entertainment attractions, whimsical venues, and fun specifically designed for children with special needs.
With the help of many generous individuals, corporations and partnering wish-granting organizations, Give Kids The World has welcomed more than 93,000 families from all 50 states and over 65 countries.

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from "ReRe," John's mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye.... no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds... those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don't currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.'s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us.... mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special... by Stacie Wiesenbaugh

Medicaid Covers Diapers, Still Great News Worth Sharing!

MedicaidCovers Diapers!  As well as programs which mirror Medicaid such as Title XXI which currently serves Riley for children who qualify.  Yes, some of you are saying to yourselves, "this is old news, where have you been?"  Some others are wondering  if I have lost my mind, because battles have gone on for years over diapers and not gotten anywhere.  Finally, in 2010 the complaintants started to win!

"Disposable Incontinence Diaper Coverage 

Effective September 1st, 2010, Florida Medicaid has begun covering disposable incontinence diapers for children ages four (4) through twenty (20). While we finalize the promulgation of the coverage and limitations criteria for these products through the Durable Medical Equipment and Medical Supplies Coverage and Limitations Handbook, please open and reference the Policy Criteria for Disposable Incontinence Briefs, Diapers, Protective Underwear, Pull-Ons, Liners, Shields, Guards, Pads, Undergarments"

Why, you ask do I mention this now?

Well, I'm glad you ask!

Diapers.  Perhaps as a parent of typically developing child you bemoaned the cost of diapers.  Imagine a lifetime of purchasing those diapers in an ever increasing size and amount.  For my family, just a year ago, it was becoming impossible to meet the monetary demand and even just having  the great supply needed on hand.  It was one of the many expenses of having a special needs child that could not be brought under control.

This past week I discovered just how easily special needs families may be left out of the loop.  First of all, If your special needs child is older than three years old, you are already well schooled in the fact that Medicaid flatly has refused to cover diapers and supplies for years despite continuing court cases leveled at the organization.  When finally, Medicaid was defeated in court, they did not go to all their consumers and invite them to purchase diapers on them.  I had opportunity to spend an afternoon with another special needs mom.  In conversation, she mentioned her stress about diapers and needing more.  I let the mention pass the first time thinking she was recalling the financial stress of diapers from last year at this time.  The conversation returned again to diapers.  Yes, diapers is a popular subject among the special needs caregivers... little wonder.  The next time we spoke of diapers I did say something about the relief she must have not that Medicaid covers diapers, knowing her son had the coverage.  The look on her face stated clearly that I had lost my mind, everyone knows and has always known that Medicaid will not cover diapers.  Yes, I told her, it does now.  Immediately, we pulled up a medical supply company and made a request.  By the end of the day, 200 diapers were to be shipped out to her front door courtesy of Medicaid.  I do believe she was close to tears for the sheer emotion of this change by the time I left her.

Special needs families are so easily isolated.  They do not sign up and involve themselves more than necessary.   It takes all of their energy to simply get through the day.  This describes my family as well.  So, I asked myself, how did I know about and take advantage of this incredible news?  Then I remembered.  Riley's PIC social worker had made the announcement to us and I took advantage of it that very day.  I do believe my response was a wild dance in the middle of my living room.  Now I hoard diapers everywhere, when our entire supply is not used in one months' time, I hide it for later.  Our country's budget problems is something I am keenly aware of and I am not going to be suddenly caught without diapers if I can help it.   How fortunate we are to have an organization looking out for our interests.   

The stash beneath Riley's hospital bed.

How unfortunate it never occurred to me to share this amazing news one year ago.  So, who cares if you sound foolish, it is so easy for special needs families to miss important news: Go tell everyone you know that "Medicaid Covers Diapers!"  Someone out there is going to be indebted to you for this little statement and very great news.

Please go out and share the news.

We are all special... by Stacie Wiesenbaugh

My Nephew Tyler Races/Walks for the Cure

I celebrate and share when my family gives me the opportunity.... So here is Tyler once again on the cover of the Aspen Times.... that reminds me to go digging through my scrap book.

This pic I’m attaching I got from online, but it was on the cover of Sunday’s paper here.  Tyler did the 5K Race for the Cure with his friend Wilson.  T is sporting a new crew cut in the black Aspen Lacrosse shirt (Chile and he got one last week).  Claudia did it too.  We were a part of my friend, Bess’s team, who got breast cancer this year.  It was really fun!

http://aspentimes.mycapture.com/mycapture/enlarge.asp?image=36841932&event=1278301&CategoryID=8608

Kara Smart

I have had an aura shift since my last visit to Integrity Biofeedback revealed opposing aura's.  They tell me this is good, I will have to trust them.

My Fragile Child - Guest post by Christine

Here we go again…

Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable. 

My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to go on vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear?  I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life. 

Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice, etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go. 

The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building. 

Finally, after what seemed like an eternity, we were called upon. 

Staff: “Will she be cooperative for stats?”

 Me: ” No, not really!” 

Staff: “Do you know how much she weighs?” 

Me:  “Approximately 80 pounds.“

Staff: "That won’t work , the Doctor will need an exact weight.  Will she stand for a minute on the scale?"

Me: “No.”

Staff: “Can she sit on the other type of scale?”

Me: “No”

Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!

After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought.  We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face

The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events leading to our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get an x-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming, crying and thrashing about.

X-ray came in with a portable machine to make it “easier” – we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face

Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally, I asked my husband to take control of Kaet, I was going to see what the heck was going on…

As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.”  The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it. 

I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and the ER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew!  During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath. 

 

Above: Kaet peers over at her mom during horseback riding, Oct. 2010.

Finally the morphine kicked in and they were able to bandage her arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face  And we were on our way home with Rx for morphine in hand to help get us through the night. 

As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again. 

My wish to share is for our special needs kids to be treated just that and not be cared for following  “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  - Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.

It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

"Patient Rights: As a Patient, you have the right to:

• Receive considerate and respectful care.
• Expect reasonable access to and continuity of care...."

By Christine

NEC Horse Show #2

It has been a very full week.  Yesterday was a wonderful today with so many birthday wishes, facebook is so much fun with all the attention on birthday's.  Finished up the day collecting Riley from Camp Sunshine at Karl J. Drews then onto his horseback riding class at Naples Equestrian Challenge.  His instructor for the summer, Miss Robin, conducted an end of class song from all the families and volunteers present to sing "Happy Birthday" for me.  We headed off home, worrying car problems, but we'll think about that tomorrow.  Chinese for dinner, our usual choice for celebrations.

Below Riley returns from the ring a little hot and tired.

Ronan had his last day of riding camp, it is an integrated program for special needs and typically developing riders.  I watched his second horseshow of the summer and took lots of pictures as instructed to share with Daddy.

Another camper receives his trophy!

Nick gets a cleanup before the day is over.

Then we headed out to visit Miss Rebekah and her family for a playdate.  Then up north again to collect Riley and by then we had all had it.  Perhaps tomorrow I'll plan a real post, but I enjoyed sharing the experience in pictures for a change.

Please visit another blogger, Stress Relief for Caregives, she loves horseback therapy too!

by Stacie Wiesenbaugh