Sunday, January 30, 2011

Life is Precious...Love Each Moment and Each Other

A week in the life of the Lentini’s…Michael and I begin each week with comparing our work schedules and we map out who can be “on call” each day of the week.  We never know from day to day when Parker will need to stay home or go to the doctor.  We both have full time jobs and we are fortunate to be able to work out of our homes when we need to but it’s really been difficult.  Both of us are hard working and we have pretty high standards and good work ethic, so this shift in “how” we work has definitely been trying.  We have learned how to “tag team” and to be flexible with our work hours, but it is totally exhausting because often times, when the kids go to bed, we are back at work on our computers either checking emails or trying to meet deadlines.  And for those times when neither of us can get out of an event or meeting, my aunt and uncle (who are retired principals) come to our rescue to be with Parker.  We are eternally grateful to them.  And we are so fortunate to have understanding staff and employers.

Parker has missed an enormous amount of school and often times, when he does make it to school, he bottoms out and we get a call to come and pick him up.  He is trying but some days are so incredibly painful and he seems to be constantly fatigued.  He has been taking steroids at pretty high doses since May and yet he still has visible joint swelling.  The JA seems to be progressive and persistent.  Just when we think, things might turn the corner and get better, the JA seems to progress again.  He is either resting or doing make-up homework most of the time.  I work when he rests and then when he is able to do homework, I often have teaching to do or motivating J.  I am learning my history (since it didn’t really stick the first time around) and I am listening to/reading aloud some wonderful literature.  At least they pick some really good books at his school.  Math is same ‘ol same ‘ol... but we do have different ways of getting to the same answer.  Science is definitely the most trying… And Parker seems to have our “work ethic” because as much as he struggles physically, he somehow gets the work done and makes excellent grades.  He made all A’s and B’s for the second time in a row and he has definitely been absent way more than he has attended school.

And then there are the medications…not only is there are ton, in various forms, at several time intervals, but some have to be “compounded”.  You see, Parker also has allergies, one of them being corn.  Corn is used in medications either to sweeten them or to bind them together.  So, four of his medications have to be specially compounded at a specialty pharmacy and one of them is simply acetaminophen…yes, you know, like Tylenol.  If we could buy this over the counter it wouldn’t be nearly as costly as the $54 we spend on his “Parkernals”, as we call them.  We figured that they are made for him so why not name them after him….And then it’s always amazing to me that we have to give him some of his meds because his necessary meds cause something else…  And then there are Friday nights.  Oh how we hate Friday nights…shot night (all our JA friends can definitely relate)…yes we have to give him his injections…We have to give them on Friday nights because they make him miserable and so this way he is home with the side effects of headaches and nausea, instead of being at school…but he still is doing his “homework” through all this…  The side effects from these meds would probably put most adults to bed…So to give you a sense of the craziness around his medications, here is the “list”:
  1. Advair 100/50 – 2/day
  2. nasonex – 2/day
  3. Saline (Not only for allergies, gets lots of bloody noses) – 2/day
  4. zyrtec 10mg
  5. acidophilus (to combat side effects…)
  6. acetaminophen 500 mg (every 4 hrs)
  7. naproxen 375 mg. – 2/day
  8. tramadol 50 mg (every 6 hours as needed…needs big time right now)
  9. Albuteral inhailer (as needed)
  10. xopenex nebulizer (as needed)
  11. colace
  12. Lidocaine cream (for numbing injection site)
  13. Predinsone (10 mg. daily for past 3 months now…but previously was at 20mg)
  14. Methotrexate injection (1cc…this is a chemo drug, but at lower dosage than for cancer)
  15. Remicade Infusion (just started a week ago, get 2nd IV this Fri. When this started, we stopped enbrel injections), with pre meds of acetaminophen, benedryl, and solumedrol (in case of a reaction)
  16. Folic Acid (methotrexate depletes this in the body, so he has to take it weekly, 24hours after shot)
  17. Omniprozel 20 mg
  18. Epi-shot (on hand if needed for allergic reaction)
And then there is the “balance” we try to maintain, for ourselves and for our other son.  We are determined to keep life as “happy and fun” as we possibly can.  Logan plays the sax and he takes weekly guitar lessons which he is truly gifted at and he loves to skateboard.  And now he has begun to also volunteer at the Arthritis Foundation on Friday evenings.  He is so compassionate and caring and we are so proud of him.  He made all A’s yet again…that’s his trend and we couldn’t be prouder.  He loves to learn.  We don’t pressure him at all…it comes naturally and we are so incredibly fortunate that we have two children who have drive and a true love of gaining knowledge.

Parker is learning how to “balance” his own life.  A child should not have to worry  at all about balance…a child should not have to endure pain and learn how to push and breathe through it…a child should not have to think about the “consequences” of having fun…and then there are people who try to give us well-meaning advice without really knowing what we are going through… we do let Parker play when he is feeling good (and that’s when people think we are out of our minds when we say he is pain a lot)…and he does play, but then he sleeps and sleeps or cries and cries because of the swelling and pain it causes.  The only thing he has played this weekend is video games because of what happened when he played outside last weekend.  He skateboarded with his brother and friend…so for about 10-15 min. intervals off and on, adding up to maybe 45 minutes total he road his skateboard.  By the evening, he could hardly walk and he said, “I loved having fun with Logan, but why do I have to pay a price of pain?  I think when I get to heaven; I am going to have a polite talk with God about kids with arthritis.”  What does one say to that?  I just listened and hugged him.

Life goes on…it continues all around us regardless of what we are experiencing.  So we appreciate the little things…And although our house is a complete mess most days and sometimes we are pulling our clothes out of our laundry basket to wear…Michael, the boys, and I have each other.  We love each other dearly.   We have our “inside jokes” and we treasure life’s gifts.  And when it gets tough, we might cry together and then hug away the tears.  We live moment by moment and love each moment together.


  1. It's funny that Parker said, "but why do I have to pay a price of pain?" Funny too that you talk about balance. I have been mulling this over for the last couple of days. Thinking that clearly we have NOT learned to balance. That Jenna should be able to play obviously, but WHERE is the balance of playing without pain. What kept coming into my head is, "the cost is TOO high!" Funny how we are in the same spot.

  2. Awww! :( It sucks how many meds are kids take, how hard a road they have it & how hard they fight. And yet, so few understands their pain. We haven't achieved a balance either. Emily pretty much just doesn't play. It is so wrong that our kids can't just be kids.