It’s All in the Numbers…21
Wow. Never thought we’d see this number. 21. On December 28, 2014 Sophie turned 21. Twenty One Years. We have lived a roller coaster life with this kid. She has outlived family and friends that I knew would be at her memorial. Bittersweet.
A good friend has said “I’m betting she will outlive us all! Just wait!” She has always surprised us, in both good and not so good ways. Living with a person, being a caregiver to a person with significant special needs is filled with statistics, numbers and highs and lows. As one of her favorite characters from Sesame Street, The Count, says, “I love to count!”
(these are all estimates, give or take a few…)
She’s 21 years, that’s
Sophie is blessed to be connected to a runner who honors her by running in her name. Here are Jessica’s stats since she started running 4 Sophie:
Started with Jessica, her “I run 4” on July 29, 2014. If you are a family with a special needs member, have a sibling of a special needs, or maybe an angel that a runner can be matched with, please go to the website and get connected. It is a positive, inspiring group of people. And there are literally 1000’s of runners waiting to be matched. There is a Face Book link also to help keep you motivated!
If you are a runner or if you like to read an amazing blog please visit Jessica’s blog: www.runningafterboys.blogspot.com
Jessica sets goals and makes most of them, while doing the million other things in her life. Very inspiring!
Now here is a number that I was afraid to calculate, but may give you a perspective on our lives (and that we are clearly not a
poster family for green living)
Based on 8 diapers/briefs changed per day:
Number of diapers/briefs: 8x365x21= 61,320
Sophie is also catheterized, she has what is called a neurogenic bladder. We began cathing her at age 3
Number of times catheterized: we’ll say 7 caths a day (though if someone is new they go through much more than that as we do sterile cathing) 7x365x17= 43,435 times!
Sophie began a sleep disorder at age 6. From that time on, Rick or I have been up with her through the night…until 2006 when we were able to get nursing through Illinois Medicaid. We were awarded 112 hours per week, with the majority we dedicated to nights. I can’t even estimate the number of hours of lost sleep in this house!
Number of nursing hours we should be getting per week: 112 hours
Number of nursing hours we’ve gotten covered on average per week: approximately 56 (only about 3 nights covered.)
We had ONE week since 2006 where all of the hours were filled for the week. Yeah.
Due to her disorder, Hereditary Sensory Autonomic Neuropathy type 2, she needs to be monitored 24/7. And I mean, 24/7. There is something that needs to be done to or for her approximately every 15 minutes to one hour. Really. Even through the night. If you are extremely lucky and she is sleeping well, maybe two hours. If you count the need to help her with her DVDs or YouTube it’s pretty much every few minutes to few seconds during the day.
Speaking of DVDs/VHS (yes, we still use those) she has approximately 1000 DVDs and videos, which she knows the inventory better than anyone-even the previews. Her Dad calls her the rewind savant, as she can rewind to the exact point perfectly. This doesn’t even count the obsession she has with YouTube and access to the millions of clips from the various genres she watches.
And she loves books. All kinds of books. From the stuff for really young kids (she LOVES Dr. Seuss) to books that her peers read, like The Hunger Games. How many books does she have? I’ve lost count over the years, but it keeps up with the DVD collection for sure.
Number of years where the hospital was our home away from home: probably from age 3 through age 11 it was a revolving door. We’d get her patched up and wait for the next GI tract crisis. Earliest years were the hardest as we and the doctors tried to find strategies to stop the pseudo-bowel obstructions and “mystery stays” where there was a probable infection that created the issue, but never found. Initially she had a huge GI crisis which the surgeons “ran her bowels” (take them out of the body and handle them to search for obstructions or dead tissue) and she came out of that surgery and 2 month stay with a cecostomy, gastrointestinal tube and central line. Which she still has to date. She receives the majority of her nutrition through her central line. This is specialized IV nutrition that is delivered directly to her heart. Think of it as an IV line where hydration, nutrients and lipids (fats) are delivered. Her sleep disorder complicated an even more complicated child.
Number of drugs and combinations tried to help her sleep and/or help with the GI crisis’: at least 22
Number of various surgeries: 9
Number of times she was put on a ventilator: one time for 6 days, we’ve been lucky there.
Her stomach basically stopped working for a number of years. We had it “to drain” for at least 2-3 years, until we found some supplements and nutritional strategies to help her in the last few years. Once we got her GI tract working (it works very slowly,) we found a nutritional protein powder that she could not only tolerate but improved her life on so many levels. We give these supplements and protein powder through her g-tube.
Number of times in the hospital since on nutritional strategies like NutriiVeda: twice, and they were for elective teeth surgeries. Not that we don’t visit the hospitals for specialists and various check ups, of course.
Pre-NutriiVeda and other nutritional strategies (taken from lab sheets )
White blood count: 1.4 (“normal” 4-10,000)
Platelets: 19 (“normal” 150-350,000)
Started NutriiVeda 1-23-12, reached 4 scoops 4-30-12
Lab numbers 1 year later:
White blood count: 1.7
Her most recent lab:
White blood count:2.1
With slight fluctuations (which is normal) she has remained in the 40s and 50s for platelets, which has shown the most improvement in her labs. She gets many more labs and levels checked, but just wanted to give you a glance.
Oh the numbers!
Sophie, due to her medical issues is home-tutored by our school district. Inclusion didn’t work for her, though I believe if the right supports had been in place since the start it might have gone differently. But she needs a lot of supports, and safety is a huge factor for her. She’s been home-tutored since 2nd grade, with a small stint of trying school again when we moved to a new district. It will be 14 years of home tutoring when she turns 22 and is no longer eligible for this service through the school systems. But we don’t plan on stopping then, either. Sophie does well in this learning environment, and we try to get socialization in when possible.
Back when she was 2 years old we got training and did the Son-Rise Program for her for about 3 years and continue with the philosophies today.
We call Sophie “The One in a Million Kid” because her disorder, Hereditary Sensory Autonomic Neuropathy type 2 is incredibly rare. We know of less than a handful of families around the world with this diagnosis. Thank heavens for the internet, as we have connected with families who share similar issues and don’t feel so alone. Sophie doesn’t feel any external pain, which is a HUGE thing. Think of yourself being numb all over your body- the harm that can be done, the infections that could go unchecked. We are a part of the group called A Gift of Pain who has connected these families since 2006.
She has a small number of people that are her friends, some younger, some older, and some adults. She’ll tell you she’s got one dog and 3 cats.And a baby brother…who is now 14, not so much a baby anymore. Life is always an adventure here!