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Sophie Newsletter Nov 2005-May 2006- Adjusting, Broken legs, and ulcers

Sophie News  (Sophie is 12 years old!) Nov. 2005-May 2006                                         

First Things First!,  THANK YOU!

Thank you all for being so patient with us in getting out our letter and to say “thank you” from our hearts.  It has been over a year since we have written- our last newsletter was in August of 2004.  This past year has been full of challenges for the whole family, along with celebrations both big and small along the way.  Last fall found us saying goodbye to Sophie’s helper, Margaret.  Since then, and until recently, we have had a series of ladies come and go- some as short as a week, while one of our helpers was with us for 3 months.  This ‘transition’ time has been hard not only on Jody, who has to train these ladies and ‘do it all’ without help between hirings, but on the rest of the family as well.  And, of course, this was during the challenging months of the year regarding Sophie’s health. 

Sophie, of course, was a trooper- getting sick a lot, but we were able to support her from home and only saw Loyola for a few short visits.  This was primarily due to her excellent primary and specialist doctors who have come to know Sophie’s uniqueness and everyone’s comfort with us making decisions on her care from home.  We emerged from the “cold” season exhausted but exhilarated that we survived it so well. 

Christmas was a new tradition for us, as Jody’s parents didn’t make the trek up north this year, so we celebrated at home with Rick’s folks and some of our siblings.  They were missed terribly, but we were able to head south for a visit in the spring. Life is full of changes in our extended families, and for once we weren’t always at the center of it! 

2005 Winter Fund Raiser

In the winter we had the fund raiser run by Rick’s friend and co-worker, John Hicks, and held again at Durty Nellies in Palatine.  This time around we had Jon Cleary and Absolute Monster Gentlemen as the entertainment.  They played some funky New Orleans jazz which was enjoyed by many friends and co-workers.  Once again John put on an excellent party on Sophie’s behalf.  Thank you John and all who made this event so special.  Rick, Jody, Sophie and Billy were able to be there for at least part of the evening.  We were thankful to hear that both Terrence Simien’s family and band members along with Jon Cleary and band were all safe from hurricane Katrina’s wrath.   

Summer Travel

This past summer we were able to make it out to South Dakota for Rick’s brother Mike’s 50th birthday and did the Fourth of July at Mount Rushmore—an awesome experience.  Traveling by van 1800 total miles and traveling straight through was a challenge with the 2 kids and a dog.  To travel with Sophie and her medical supplies is almost overwhelming, but Soph’s tutor, Julie, agreed to come with us and was helpful in so many ways.  Seeing the South Dakota Prunty relatives was wonderful, and some hadn’t seen Sophie since she was about 2 years old.

Extreme Home Makeover?…nah.

This past summer we did go through the experience of applying for Extreme Home Makeover- it was a challenge to put together info on Sophie, our family and our home.  They said they were looking for “compelling” stories and we thought ours could be one.  The staff that interviewed us seemed interested, but we knew we weren’t in the category of need as some of the families are that are on the show.  It would have been interesting to see what Ty and his gang could come up with to help this challenging child of ours!  It was probably destiny that it didn’t happen, as we didn’t know what was lying ahead for us soon after…

A New ExperienceIMG_0308

In August we experienced something that we didn’t expect.  You may recall us making the statement, “would Sophie feel it if she broke a bone?”  Well, we have an answer to this question now.  Not knowing how it happened, but guessing it was from a transfer from her wheelchair to the floor, Sophie broke her femur (largest bone in the body- the top leg bone.)  Her orthopedic surgeon, who has consulted with us about her back and future hip issues, had a major challenge.  After the long surgery, he told us that he felt her leg had been broken for more than a day (we spent some time going back over the hours before Jody discovered the problem, but still didn’t have a clue) – Jody and Rick were the only caregivers as we were between helpers.  Probably a good thing as we may have lost a great helper over it.  It was a HUGE spiral fracture that ran almost the length of the upper leg.  She was in traction for about 12 hours (not a pretty sight) before surgery to place a large pin into the part of the bone that goes into the hip area, a plate and pins down her leg.  She is now sporting quite a long scar and is healing well.  It has been a challenge as the answer to the question is “sort of.”  You or I would have been clinging to the ceiling with this kind of a break- Sophie just whined a little and even scooted on it.  She was trying to tell me something was wrong, but I, Jody, was totally off- I thought it might be an abscessed tooth since she kept touching her head when I asked her what was hurting.  We are currently awaiting a new wheelchair that was delayed due to her newest curveball.  We are also working on improving not only her immune system, but now her bones as well.  We’ve learned that her bones are more susceptible to breaks from being in a wheelchair, from being on seizure medicines and for those who are on long term central line feeding.  As we have said before, “never a dull moment here!” 

The Unthinkable Happens; Caught With Our VCRs Down!

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Sophie staying off her tailbone to help heal.

If you know Sophie, you know that she LOVES her videos.  Years ago, when the price of VCRs dropped, we decided to let Sophie be in charge of her VCR.  We now have about 4 that we rotate in at Best Buy for repairs as she is extremely hard on the buttons.  The Geeks get a kick out of seeing Jody come in with 2-3 VCRs at a time to be repaired.  We are probably the only people who take out extended warrantees on their VCRs and actually use them!  At the time of this writing, Sophie had had a particularly rough time with her VCRs and we were caught with being without one.  Not a pretty sight!  Sophie doesn’t understand the concept of “broken” in this sense either!  So we now have 5 VCRs as they take 1-4 weeks to be repaired.  We loath the day that VCRs become obsolete as the damage she could do to a DVD player let alone the DVDs is a scary thought.   

Sophie’s Newest Friends

 Basia, (pronounced like Basha,) came into our lives just after Sophie broke her leg.  Jody tried once again to find help as we couldn’t do single lifts with Sophie due to her extended and broken leg.  Basia is another wonderful helper originally from Poland.  She has enthusiastically taken on helping with nursing duties, helping out around the house and with Billy, and the interesting task of teaching Sophie.  Sophie has taught Basia many new nursing skills in return.  What Basia has yet to learn is the “hospital mode” we need to go to at times.  Sophie again surprised us by having a decent 2005 winter health-wise and we have managed to stay out of the hospital due to illnesses.

  Lizzy started working with Sophie during the broken leg time and was helpful in providing some reading time.  Lizzy is your typical great teen- heart of gold and not enough time to do all she wants to do.  She unfortunately isn’t coming around anymore, but we were glad for the time she spent with us and Sophie.

 Amanda is another teen who started working with Sophie and learning the Son-Rise program during the fall of 2005.  Amanda comes once a week to work with Sophie and has been a trouper about the various situations we find ourselves in when caring for a kid that is unpredictable.  She has a love of music and helping Sophie be her best.  We are looking forward to a long relationship with her.

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OK-Let’s Get This Thing Out Already!

March 2006

Our second delay in getting this out had to do with sleepless nights.  Sophie, as many of you know, has a sleep disorder that the doctors can’t figure out.  Neither can we!  She has been on some heavy meds over the years (this started when she was about 7,) and it looks like the meds aren’t being effective anymore.  We and the doctors are analyzing all of the reasons for it, but we have yet to come up with a reason.  We did spend 2 days at Loyola in February to try a new med.  The experiment failed.  A high level of a trace mineral was found, so we are working on that as a possible cause, but time will tell as we try to leach it out of her system.  In the meantime, this is a very VERY tired house.  Newest news is a possible 2-3 week long stay at a hospital to try to find a new medication to help her.  Not something we look forward to, but it may be needed.

Christmas 2005 was a much happier affair as Rick and Jody’s parents were able to come up this year.  The time is always too short, and we are trying to find a way to go visit both sets of grandparents again as soon as we find some peace to our nights.

Ok, Let’s Try Again: May 2006

Again we were delayed for some not so good news- Sophie did make a trip to the hospital in late April/early May for one of her Mystery trips- her stomach did its pseudo-bowel obstruction thing, she was in lots of discomfort, with fevers, but we never found an infection.  While we were there the shearing sore she started while in a new position for her broken leg (along with her back changing, growth, and nights of sitting up) decided to get worse.  In fact, while we were there it went to the bone.  Now, Jody doesn’t get grossed out from much as we’ve seen just about everything, but this is just not natural.  Seeing your tailbone is not “normal,” not even for our “normal!”

We are currently treating it at home and waiting in anticipation for a surgery to close up the wound when the plastic surgeon says it is ready.  This will also entail a 2-3 week stay in the hospital to be monitored and on a special kind of bed for healing.  I’m not sure how we are going to survive this, but we will find a way!  Jody’s goal is 2 weeks at most in the hospital and then back home with the special bed either rented or bought. 

This new development has put our lives on hold and our anticipated Spring trip to Florida to see Gramma and Grampa Heyn won’t happen.  Our Summer looks like it is shaping up to be one centered around healing and adjusting to new routines. 

We might also find Sophie headed for back surgery within the next year. She has grown a lot in the last few years and her scoliosis in her back has gotten worse.  Coordinating this large surgery is currently on our “to do” agenda, as it will encompass needing help for the family, post-recovery issues that are too numerous to list, getting in much needed vacations, camp and visits while being the optimum timing for Sophie to heal with the least complications that are within our control.  As we say, “Never a dull moment here!”

Billy, now 5, is having a ball at pre-K and has taken up Karate.  He gets the benefit of school at home with Sophie, so he is also a wise young man regarding things such as the solar system, animals and their habitats, geography, and oceans.

Next Events for Sophie.

The next benefit for Sophie has been set up! Mark you calendars for Tuesday, June 20,2006 at Durty Nellies, 180 North Smith St., in Palatine.  Dinner and free beer from 6-8pm with a show by American English beginning at 8pm.  American English specializes in music and culture of the Beatles.  

Another benefit may be scheduled for late August of this year and looks to be a pig roast.  Location and date to be announced.

May this letter find you happy, healthy and with peaceful days and nights.

Love,

Jody, Rick, Sophie and Billy

 

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