Search

momunderquarantine

eekk everyone has germs!

Month

May 2017

The show must go on……again

IMG_9617.JPG
Katie loves her green ball!

Today was our first appointment with Katie’s new PMR doctor (Physical Medicine doctor) and it was definitely an interesting appointment for a few reasons. First off apparently my daughter has a bias against white haired men with a white beard so I’m not really sure how much she’s going to love meeting Santa for the first time this year. I imagine lots of screaming, because that’s what she did the entire appointment. She’d stop for a moment look to see if he was still there and start screaming again. So I may be slightly deaf today in my left ear but whatever. Wooo parenthood!

So the meat and potatoes of the appointment is this, he has no idea why Katie is so behind developmentally, meaning physical wise. She doesn’t crawl, she doesn’t walk however she scoots in circles when she wants to. Personally I feel it’s because she’s only really been able to do PT for the last almost 6 months but I’m not a doctor and that’s why we take her to a specialist. Anyhow he said she’s a mixed toned patient and that he wants to order x-rays of her spine and hips to rule out scoliosis which actually does run on my side of the family. He wants her to have a MRI done after her 3rd birthday, which I’ve agreed to. Lastly he starts talking about her face, how her ears are shaped, that she has a weak chin whereas I have a strong chin and finally her eye shape and set and says he would like her to have genetic testing done. Part of me is like “FUCK, I have to tell my crazy husband this” another part is like “wait she has my eye shape and set, do I have something genetically wrong with me?” a part of me is completely calm and the last part of me is internally screaming. We talked calmly about it and he mentioned how pleased he was with the progress she’s making in therapies and that he’ll see us back in September so obviously it’s not an emergency situation. I get the scripts and leave.

I get my sweet little girl into her car seat, I start driving and the freaked out part of me comes to a head. I have a disturbing ability to push that shit down and stay calm with the doctor. The entire time I’m thinking oh my god what if it’s genetic, is this my fault? Because as parents we sure do love to blame ourselves for anything and everything. Wooo parenthood. I’m thinking shit I have to call my husband and he’s going to flip his lid and go into a mental spiral where Katie will never be normal, living with us her entire life and our retirement savings will go to her care after we are dead. (He tends to freak the fuck out and jumps ahead to basically a dystopian future, it’s super annoying). So instead I turn on Queen’s “The show must go on” play it 3 times cry a little while I’m driving on the freeway. I dry my tears and pull myself together, take a deep breath and realize I am being silly.

When she gets the testing done only two things could possibly happen it shows up with something so now we have a diagnosis that hopefully we can work with or it comes up clean and rules out a whole slew of genetic issues which would be a good thing. Either way it’s a good thing, either we will know what’s up or we will know for sure that she doesn’t have a whole bunch of genetic stuff.

At this point, I just want answers and if there is something wrong, so what, we will deal just as we have been for the last two and a half years. Will it be harder? sure but isn’t that what life is all about a whole lot of sadness and hardship for a moment of happiness. Katie’s happy no matter what’s going on, whether its genetic or she’s building up strength physically, Katie is happy. She’s healthy, she’s thriving and she’s beautiful just the way she is.

So I’ll leave you with this on this cloudy, gloomy Friday, as Queen’s lyrics go “I’ll face it with a grin, I’m never giving in, the show must go on!”

 

I hope you all have a lovely Memorial Day weekend, I imagine I’ll probably post something about Memorial Day after I’ve gotten some sleep.

Advertisements

How Katie really feels about naptime

IMG_9223
Don’t let this picture fool you, she fights sleep like she’s Muhammad Ali! 

I thought I was only going to write one post today but surprise bam a second one. So most parents know the frustration of getting your little human to go down for a nap or go to bed at night. I have to commend each and everyone of you because holy shit do they ever fight naps like they are a boxer in a heavy weight championship bout. Don’t they know one day they will regret all the naps they are currently fighting. One day they are going to get older, I’m assuming teen years and want to nap but they can’t because homework or whatever. Then they become adults and have to work and have responsibilities and will have little to no time for naps (Unless your my husband that dude could sleep during a rock concert). I think it finally hits you when you have children how much you regret all those naps you didn’t take and then the cycle repeats because I’m pretty sure our parents were strongly considering giving us Benadryl or whatever they had in the 80’s to make us fall asleep and now I totally understand why on the side of the Benadryl bottle is says “Do not use to make child sleepy”.

 

I don’t by the way use Benadryl to make her sleepy but oh my god I totally get it now.

“You have to F-ing poop” TMI warning

Obviously from the title you know where this is going lol also that it is probably TMI!

So when you’re little one goes through an intestinal surgery whether it’s one or multiple ones you’ll come across a few bumps in the road especially when you add a G-tube into the mix. Depending on the child you’ll have to deal with either diarrhea or constipation. Well poor little Katie suffers for the later from time to time.

Normally she’s pretty regular but when she’s not it quickly becomes a nightmare because well what doesn’t come out that end comes up in another way….vomit! So the two days I’ve been giving her prune juice, nothing so today I upped the stakes and gave her pear juice so hopefully that does the trick. I’m kind of hoping it happens within the next hour because her dad will be home and we have a deal, he must change one diaper a day and I find it hilarious when the one diaper a day is the number 2 one. He gets so dramatic, I should video it one day and post it up because it’s honestly the funniest best thing ever and like the evil EVIL woman that I am I so enjoy his mental anguish when he is changing her diaper.

So moral of the story is I don’t need the book “Go the Fuck to sleep”, I need a book called “You need to fucking poop”. Happy weekend ❤

Sometimes this plain old sucks

Katie has a g-tube and while it’s awesome because I can make sure she gets all the calories she needs and the proper amount of vitamins etc. I fucking hate it. She’s got an extremely strong oral aversion and if you try to feed her orally she fights you and starts sobbing which of course isn’t great when you’re trying to make her like feed time and trying to convince her it’s fun to eat. She has a feeding evaluation at the end of the month and I hope on all that is holy that they figure this child out because so far I’m failing at an epic level.

The other issue with the g-tube is she pukes….a lot but it goes in cycles she’ll keep all her food down for weeks then she’ll go into a week long cycle of puking normally there’s a cause, she’s teething, she’s congested, allergy season, she got moved too quickly after being fed, was too active while getting her feed etc. but other times like this week it’s none of that and I have to sit her and struggle to find the problem and fix it so we can get her to keep her food down and I just want to pull my hair out. My husband gets pissed off when she pukes so that doesn’t help (he never does anything bad to us he just storms out to the garage), I fully believe he is also suffering from PTSD but he won’t get on the medication to help him. Anyhow this just plain old sucks and the day she eats orally full time consistently I swear to God I’m going to down a bottle of wine in celebration and then pass out on the kitchen floor because I don’t drink. lol

In the end Katie is still getting the calories she needs, so she isn’t losing weight but my god this is beyond frustrating and I wish that she didn’t have to go through all this crap.

Blog at WordPress.com.

Up ↑