Josiah has had a rough day. He was up at 1 am thrashing about. He was up again at 4 am, screaming and pummeling himself repeatedly in the ear.
We tried the usual interventions; pain medication, a laxative, a suppository. Nothing seemed to help. We waited a few hours and tried more of the same.
Still, Josiah cried hard, doubled over in pain, unable to express the source of his discomfort.
Last time he punched his ear repeatedly, the poor guy was in excruciating pain from a ruptured ear drum. We had no idea his ear was even infected at the time, treating him instead for severe constipation. So, just to cover all the bases, this morning I put 3 medicated ear drops in each ear as well.
There’s nothing like watching your child in agony, unsure of the best way to help. Getting too close puts us in harms way, yet we need to be with him during these episodes to block the blows. Otherwise, Josiah injures himself pretty badly. He has a goose egg on his forehead, bruising at his cheekbone and his ear is red and swollen.
Josiah’s GI specialist whom we see often lately, has been trying to help us figure all of this out. Given the regimen he follows, including a low fod-map diet, incessant trampoline bouncing and a large volume of water intake, it makes no sense (to me) that Josiah should struggle as much as he does.
Still, it’s an ongoing battle. We have a few good days. If we are really fortunate, maybe a week or so and then it’s back with a vengeance.
Frankly, I’ve had enough. Someone, somewhere knows how to figure this out and help the poor kid. No one should have to experience this level of discomfort with no immediate relief in sight every few days.
I know slow motility is an issue with kids on the spectrum, but there has to be a better solution than just watching your child writhe in pain, wrestling to keep him from self-injury while hoping the laxative, suppository and pain medications will kick in quickly.
A couple of hours ago we were packing the van, ready to whisk Josiah off to the ER for some heavy duty pain killers to knock him out. That’s just crazy.
Fortunately, the ride calmed him down and eventually Josiah fell asleep. We were able to get him in the house and into his bed. I’m happy to report he’s still sound asleep which means we can rest easy for a while.
But this sleeping bear will wake eventually and then what?
Will he be all better? Will the cramping pain or whatever it was he was experiencing be gone? Will we be in the ER before the morning comes?
I wish I knew.
While Florida braces for the impact of Irma, Rick and I are hunkering down here from the fierce blows of hurricane Josiah.
Current models suggests he will be a CAT 5. Please pray for us!
Praying now, Sandy.
Thank you Kim! Always grateful for your prayers!
I am praying for you all.
Love you,
Phyllis
Great big THANKS to you, Phyllis! We need them for sure! Love YOU!!
I’m so sorry for you all as you struggle with this mystery! The pain Josiah has is unfathomable in its scope and dealing with it as you do is remarkable, but know that thoughts and prayers are with you as you forge ahead. If only we could wave a magic wand and make it all go away! Rest assured that I and many others would help if it were possible ?!
Janet, you are too kind. Just want that magic wand already to make this boy better!! I appreciate your support!
I daresay if they spent a weekend with him they’d be even more confused, bewildered and frustrated! You are in a most difficult situation imaginable, but never have I seen anyone handle such a challenge better! You and your family are quite amazing and admirable. If there were something I could do to help you could consider it done! ?
I imagine we’d have answers more quickly if they had even just one day with Josiah over a weekend..lol. Trusting God has the answer and will provide wisdom! Praying that’s soon.
So very sorry, Sandy, about Josiah. Will keep you all in prayer. Please let me know what I can do to help.
Thank you Beth! B-O-R-A, B-O-R-A. Just let me know when to meet you at the airport…I’m sure you could use it too about now! : o )
Sandy, haven’t seen you all for many years, but I want to tell you I think of you all often – I still have the picture of Josiah as a baby on my 2nd refrigerator which always reminds me of your family. I am so sorry to hear of your’s & Josiah continuous struggles & pain. My son has end stage renal disease so I have a bit of an idea what it’s like to have your child in pain & feel like you’re helpless as to how to help them. Have you ever used essenti oils to help yourselves and Josiah? The Young Living Oils are the only ones in the world & are truly of therapeutic grade oils & nutritional stuff. They actually help by promoting optimum nutrition. Check it out online,youngliving.com I will be praying for all of you. GOD BLESS
Ginny, thank you for your prayers. I did try them a couple of years ago for a short while. I am so saddened to hear of the struggles and challenges you guys must be going through. I will keep you all in my prayers.