A look back.
I’ve written about parenthood since the day I became a parent way back in 2008.
Lately, I’ve been going through some of the old things I wrote years back to see how my parenting has changed.
I was a “special needs” parent before I ever knew it.
However, It wasn’t “special needs” parenting to me.
It was just our “flavor” of “parenthood.”
Jonny was born with Kabuki Syndrome though we didn’t know it at the time.
He went through a plethora of tests and procedures at birth.
He had bilateral hip dysplasia which meant that he basically had dislocated hips (shallow sockets) which required a surgical repair at 3mos old.
They had to put him in a “spica cast” which went from his armpits to his ankles for like 10 weeks.
He also had a cleft in his soft palate which also required a surgical repair when he was a year old.
He couldn’t latch on because of his palate so he couldn’t breast feed. He needed a specialized bottle.
He was EXTREMELY colicky at night, sometimes crying 6-10 hours straight through the night which meant We were perpetually sleep deprived.
Parenting through all that was probably the most difficult process I have been through as a parent.
Seriously.
Jonah was diagnosed with autism (level 3) at 3 years old and Jonny was BY FAR the more challenging child in his younger years.
We didn’t have online support groups back then so we just had to figure it all out ourself.
And that was just “parenthood.”
I have trouble identifying as any sort of “special needs parent” because our kids are so unique. They each come with their own unique challenges.
There is no “parenting manual,” special needs or otherwise.
And to me… ALL THIS STUFF we have gone through with our kids is “parenthood.”
It’s just our flavor of parenthood.
Sure it is challenging at times.
…Because parenting comes with challenges.
But we do what we need to do for our kids to be successful.
And Jonny is an absolute superstar. This fall, He will be starting middle school, and he is doing great.
Here is a look back at how far we have come with Jonny.
#kabukisyndrome #myRareTreasure #ausome
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10/6/2008 (Jonny is 3mos old here)
Jonny’s surgery went well.
The doctor had to do a closed reduction operation cutting 1 of the 3 adductor tendons in his groin on both legs to properly position his hips.
He has been all out of sorts since the operation and we are having a tough time getting him back into a regular routine.
Jonny has regressed into his ‘old’ routine about a month ago, fussing and fussing from when we try to put him to bed at 9pm until around 3-4am.
It is a whole new challenge with this cast on.
He is now 3lbs heavier thanks to his cast and wearing all 6-9mo clothes even though he is only 3 months. He pretty much skipped all his 3-6 month clothes since he will be casted until Christmas and by then he actually WILL be 6 months.
Changing his diaper is an absolute nightmare.
We still haven’t found a good way to do it. I am using a newborn diaper and tucking it into the cast (after cutting off the tabs and trimming a couple inches off the back to make it fit).
Then we use a size 3 diaper to wrap around the outside of the cast holding the newborn one in place.
Since we can’t fasten the newborn diaper on, all the “liquids” tend to leak everywhere underneath the larger diaper.
When he is on his back, it will leak under his cast all the way to just below his neck. Almost every time I change him, I have to change his clothes as well and the whole ordeal is 15-min a pop.
Which wouldn’t be so bad except the diaper is held much closer to his body with the second diaper holding the newborn one in. So he fusses now after EVERY time he pees which means he has to be changed roughly every hour if he notices he’s wet.
And with it taking 10-15 min to change him and he only sleeps 3-4 hours at a time…oh wait, did I mention hes back to eating 2-3oz a feeding (from 4-6oz). So he wakes up more frequently hungry.
Although last night he had a good 5oz feeding from Mama, which I would have expected to knock him right out. Instead he stayed up until 3:45am.
Anyways…blah blah blah, Mama’s working 12 hour days + Jonny up every 20-30 minutes for SOMETHING = Daddy doesn’t sleep at night.
I’ve begun to affectionately call Jonny a ‘werewolf’ since he saves all his fussing until it is dark outside.
Seriously.
The kid sleeps all morning, is an absolute angel during the day time, but as soon as it gets to be around 8pm, look out, and at about 10pm…ouch.
Oh and we can’t bathe the poor guy so his cast is starting to smell like a public bathroom at a rest stop… Can’t really sponge bathe him either on account that he can’t sit back in the bathing chair since his legs are at such angles.
Oh that reminds me…this car seat the hospital gave us to accommodate Jonny’s cast… I swear is for a 4-year-old.
It is probably 2.5 feet tall and a good 8-10 inches deep. Due to liability issues they could not tell us how to install it or how to use it.
If Jonny was not in the cast and was able to sit back in it, his legs would barely reach the end of the seat. We had to prop him up using a lot of towels and blankets so he could ‘sit’ on the edge of the chair. ugh… We won’t be taking him anywhere for a while.
In the meantime, I have taken him downstairs for his fussy nights and set up a sort of ‘throne’ out of the bean bag chair for him. The cast digs into his back when he is asleep on his back so it helps for him to be cushioned. He seems to enjoy it and will play and sleep there.
All in all he has been faring okay (all things considered). We are definitely counting down the days until his cast comes off but we have been blessed with TONS of help.
My parents came and cleaned our house and my sister cooked all afternoon yesterday so we have good food to eat for days.
I forget to acknowledge this so many times so I just want to take the time to say “Thank you.”
It is a challenge but we will get through it. Jonny is a trooper. He has been fighting his cast attempting to defeat it.
I have a feeling that the reason his harness didn’t work was because he fought it so well he defeated it. He is determined to not be held back.
We will occasionally flip him on his stomach when we are changing him and I saw him army crawl with just his arms and a little momentum a good inch forward across the changing table dragging a 3-pound cast screaming in rage the entire time.
He is such a strong boy! He will have such upper body strength when he gets this thing off, his legs will have to catch up.
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