The struggle is REAL

I remember once I prayed for the return of a boyfriend when we broke up.  I remember once praying for a zit to disappear, or for my lost money to reappear, or for an awesome Birthday gift. What things do you pray about??  Maybe it is for a new car, a nicer teacher, for new furniture, possibly to beat the Chiefs, your kid to shoot hoops better, for coach to play your kid more, to be more beautiful/handsome...

Man do those seem so insignificant at this point!

It is extremely hard to go through this life and not show my resentment for MYSELF and others that take life and the blessings that we all have for granted. Have I always been this selfish?? Have WE always been this selfish??

See the suffer: the significant pain of others especially the children's pain. Remind yourself day in day out. Then that's what you can pray for Nancy.

Hello you nasty little pancreas.

• Cheese/Pizza
• Certain Red Sauces
• Viruses
• Over Exertion/Lack Of Sleep

A big Thank You to the latest addition to the list of "Things that will set off JJ's pancreatitis." Saddened and confused as to how to restrict certain things in JJ's life.

Our fun get away in the beginning of July plus an extra sleepover plus late night baseball games equals a small (couple day) episode. Starting night football practices plus an extra sleepover equals a small episode currently. Heart breaking to know that he may have been embarrassed to walk off the practice field tonight in pain. The love that this kid has for football is amazing. So tell me, how are we as parents supposed to restrict things that make our kid a kid, or restrict things that make him smile? Not just that little side grin-- that huge, show my teeth, I'm so proud, look at me mom and dad, smile. Sigh.

Do not let it define him as a person. Jaylen is not acute recurrent pancreatitis. Pray for relief. Pray for healing. Pray for parents to do the right thing when it seems as if there is no right thing to do.


 

Admitted again. Sigh.

Admitted over night for pancreatitis. Pain was too bad to control at home. JJ was "ok" Sunday and tried school Monday, but pain over took his body by Monday night. ER was awful again and I'm disappointed that a child with recurrent pain/inflammation doesn't have a way to skip through the ER registration and waiting room. I will be working (again) on that when things have settled down. He's looking much better this morning. Pain scale from 10 (when we drove to hosp) down to 2 now (tues morn).

Why does he have to suffer? I despise you pancreas- it's too bad his body needs you. Away with you pain...

Pain pain go away. Come again NEVER!

I complain way too much about racing around running this child here, that child there! I would give my arm/leg/better yet my own pancreas to be running our JJ to and from today. His pancreas pain comes in waves. Anywhere from pain scale 3 to 7. I have attached a short YouTube video explaining acute pancreatitis for education purposes ;)  Pray for relief for him today and every day. Hug your babies, show them the love you say you have...

https://youtu.be/inRSjh3bHPg

Today pain scale 5.  Pain meds, anti-nausea meds and then one big vomitting episode. I am convinced flu and cold season hits JJ's pancreas super hard.  He layed on the couch resting for most of the day. He was stoked about the first basketball practice tonight. He tried to go and at least watch, but it didn't work out.  He was pale, weak, and had a severe headache. He tries so hard to not let his pancreatitis keep him down. This can not define our boy.

Dear God, please take this from him. JJ does not deserve to hurt.

Pancreatitis. The Devil.

I am scared for you JJ.
Thursday and Friday were rough. It is excruciating to watch helplessly and not be able to do anything for you.  I beg and plead with God every day to heal your pancreas. I would trade places in a heartbeat.
I love you JJ.
Mom

August 2015

Long time. Many Appointments.  SPINK 1 mutation with nothing else.  Certain marinara sauces cause a pancreatitis flare (mainly carry-outs), along with heavy dairy (cheeses etc), and viral infections.  Pediatric pancreatitis is one of the most painful things to see your child go through. Milwaukee Children's Hospital said there is nothing wrong with his immune system, no Cystic Fibrosis mutations, and no other hereditary mutations (other than SPINK 1).  We are stuck. Lucky to NOT have a huge flare up since beginning of March 2015.  Watching the clenching, vomiting, and pain that JJ goes through is nothing I look forward to.

Today is JJ's 10th Bday.  I am thankful for him in general, but am super thankful that he has had no pain at all today. Thank you Lord! Even though he has had Buffalo Wild Wings and strawberry shortcake--lol! I look at him and see many good things:  passion for life, football, baseball, God, education, and such a will to please.  It is my prayer that he continues and doesn't let pediatric pancreatitis get in his way.

I wish I could take it from you Jaylen... Mom