Sunday, December 27, 2015

Bittersweet Holidays

The holday season. A time of wonder, delight, and sometimes sadness.

That's what we felt, the day before Christmas Eve. Chloe had her appointment with the Developmental Pediatrician finally. We rode with my grandmother, who insisted on riding with us since the other half couldn't go. (Cue my life flashing before my eyes a few times... she's a terrifying driver...) We ended up about 10 minutes late, but I got us checked in on time.

Long story short, after a long discussion, my baby was finally given the other diagnosis... she has Autism Spectrum Disorder, Sensory Processing Disorder, Language Disorder, and he said that she is heavily likely to be diagnosed with ADHD at the age of 4.

I don't think I've had a blow that bad since we started trying to work out what was going on with her...

It explains it all, though... every detail can be explained with the diagnosis set she has been given. It doesn't make it any easier to swallow.


Both of us needed a mourning period, so to speak... this was the diagnosis that we were expecting, but not what we had hoped. That said, once we got a chance to talk, after he got off work... It's not like we feel any differently about our Chloe-bear, mind you... it's just a lot to take in. You have to understand, it's the realization that, depending on how she does later on, she may not go to college... she may be in special education her whole time in school, she may never have a true career, move out of the house... it will all depend on how she develops the next few years. And that's what scares us the most, we have no idea what we're getting into long-term. That takes time to understand, even as her parents. But, we came up with a tentative game plan, we're figuring out the therapies we need to get her into, and making sure she will continue what she already has. We will give her the best chance she can get, no matter what we have to sacrifice.


But, the news did make the holidays start out on a bittersweet note.

We trudged through Christmas Eve, went to see family and have dinner that evening. I watched a movie that I will begrudgingly admit was pretty funny... I suppose I have to let Mike have a win for that one... National Lampoon's Christmas Vacation, I can say, albeit a bit hesitatingly, really was amusing.


Christmas Morning hit, and we all got up around 7am and began the day. Kids got their Santa gifts, and I gave Mike the cologne and cookies I had been able to afford, even though I felt bad it wasn't more. He was making me wait for my gift though.


When we got to my grandmother's, I figured out why.

He told me to open it, and initially, I had no idea he was filming me. He had wrapped a bunch of junk in a Christmas Light box. I thought I was being trolled, honestly, and I was laughing. I found one box, and thought it was a necklace. Nope, thumb tacks. Cue me chucking the box at him and snickering.

I pulled all of the stuff out, and an earring sized box fell out. I figured, ok... earrings then.


Needless to say, it was not earrings. And I cried my eyes out. After almost 6 years and two gorgeous daughters, I'm engaged to the man I saw myself marrying in high school. We're tentatively thinking of having a ceremony around April of 2017. I'll be setting up a savings account for the wedding, so that we will have a budget in concrete, but you know what this means?? That's right... expect to see wedding planning stuff on this blog now.

As we move on to the New Year, we're doubly dedicated to what our girls need and making their life better. We're planning our trip for Disney in a couple of months, during my Spring Break, and I am absolutely excited about that. Our girls deserve a nice trip, and we can go on a budget. Disney seems to get more affordable if you stay at the resort.


Anyhow, Merry Christmas, Happy Holidays, and a Happy New Year!! The munchkins and I will be back in January of 2016!!

Monday, December 14, 2015

Happy Holidays!!!!

Hi all! Welcome back!! (This was supposed to be my one blog entry today, but a neglectful wench pissed me off... check that post out, if you are so inclined to see me raging ever so slightly)

First off, let me start off by saying Chloe is finally over that last respiratory infection. It took 6 weeks to get over it. I'm not even joking. I'm just glad it's over now and we can begin to enjoy the holiday season.

We kicked it off with a trip to the holiday parade!! The kids loved the floats! Rayne had a star sabre fight with her daddy. Chloe hid after a while to get away from the crowds, but even she was looking at the floats from her perch off into the distance.



We headed to see the Christmas Lights in Caswell County NC this last weekend. The kids loved it, I've never seen them dance together like they did.



They got to see Santa, and Chloe didn't want to leave.


All in all, it was a really, really good time, and I'm glad my little wiggle butt is coming out of her shell more. It's nice to see her blossom into a toddler, even if she is a bit behind compared to others her age.

I actually have some exciting news, that I have shared already but, you know, not on here and all. I got hired to be a freelance writer for BabyGaga! I've wanted to do that for over a year, but, you know... previous administration was not the best. I missed that site and really wanted to come back a while ago, but I didn't leave on great terms and finally, just finally, I got the inclination to go back. I was offered the position, yes it is paid but it is not like, makin' it rain kind of paid.

(Not my current financial situation)

My first article was posted up, you can check it out here.

Oh, get this, so Rayne's school told me a week ago that I had 3 weeks or more to determine if I wanted to get pictures, right? What did they tell me Friday? Oh, sorry, you only have until Monday... yes, this is the only chance you have to get pics... no, you can't order online.

Of course not, why would I want these? Not like they're
cute or anything... *sarcasm*

What. The. Fiddlesticks?!

These are my kid's first school pics, of COURSE I want them! But sadly, it's also rent week and I can't afford them until Thursday... so, 3 days late. I called the picture company up... school was lying to me. Bright side, I can order her pics any damn time I want from now until freaking August. Which I will... in January.

Speaking of her, is it bad that we've told her that Santa will be mad at her if her behavior in school does not improve?? Because... we did.

Why?

Because she's four and damn it, that threat works for now. I'll take whatever I can to get this kid to stop acting like a fool in class. She's more than capable of good behavior, and I don't care what people say, no kid should be excused from punishment for throwing toys and hitting the teacher, albeit by accident.

Where we plan to be staying at Disney!! 

Anyhow, we're actually planning our Disney trip for March, early March actually. I cannot believe that, hopefully, in less than 3 months we will be headed down to Orlando to spend 5 days in Disney, maybe taking some time to go to a beach down where we used to live while we're there! SQUEE! We have a room picked out, we're getting the Little Mermaid suite, and a resort package. We'll get free wrist bands that act as our room keys, and there's accommodations for Chloe!! That is the biggest plus! It's a trip where we won't be constantly feeling bad worrying about what people think of Chloe, where the cast members will be willing to help us out and not treat us poorly like Carowinds did.


But, yeah... It's the holidays, and we're all happy, having a good time, and ready for good ol' St. Nick to come to our house on Christmas Eve... Now Mommy and Daddy just need someone to watch the kids so we can pick up the last of the presents from the pet store (Rayne wants aquarium supplies after all) and dollar tree (Because she's going to break half the toys I get anyhow).

Happy Holidays, everyone!!!  

Some People Should Not Have Kids...

Well, I finally saw it. I saw someone being so incredibly irresponsible that I actually called the cops on them. What was it? It's something we hear about all the time in the news in the summer, but never in the winter... 

Well, it was 3 children, all aged 4 and under, left alone in a car, the car running... one of them was an infant who looked to be between 5-7 months old. Both older kids were jumping around in the car like Thing 1 and Thing 2... difference is, the Cat in the Hat was nowhere to be found.


Concerned, since I am a mother myself, I stopped, got my kids out of the car, and stood with my kids waiting for a minute or two to see if someone came out of the grocery store. Keep in mind, this is a full grocery store, not like a mini mart... it's still not right when someone does this at a mini mart or gas station, but it's so much worse when it's a damn supermarket sized grocery store...

When no one came out, I did what a responsible person should and would do... I called the police. Gave the make and model of the car, the color, the number of kids in it, and the license plate. Stayed there and made sure these kids were ok, since no one was monitoring them or watching them at all.

"Hello, 911, I need to report a dumbass..."

The mom came out, and glared at me fit to kill.

Really, lady?

Really?

How DARE you be concerned for my kids' well being, you b*tch!!

You left 3 small children in a running car alone while you went to get groceries. Screw you and your hateful looks. And you could tell, she knew I was on the phone with the cops. She was quick to get her ass out of there when she saw me.

And you know when the cops showed up?? 15 minutes later. Well done, Danville City Police Dept.

Seriously did you need a goddamn donut break before you headed this way
or something?

Seriously, a few things about this just irritated me to the point of needing to write about it. (And putting my other post on hold until I finished) First off, the cops didn't even care. You hear all the time about these people who go to jail for leaving their kids unattended in the car... not these people Why? Because the cops here couldn't give a shit.

Second, what kind of parent leaves 3 children under the age of 5 in a car alone by themselves anyhow? And before you say anything, yeah no there is no way any of those kids were 5. I have a 4 year old, I know what that age looks like. These kids looked 3-4 as the older, the other one, who looked 2, was in a highback booster seat, and there was an infant halfway strapped in because, well, why not. If you're going to break all the car seat safety rules, why not mess up those infant straps as well. It's not like they need them, right? They don't save lives you know. That's all some stupid conspiracy.

Eh... good enough.

Ugh.

And yes, I watched her pull away... did not buckle a single child, or fix anyone in their seat. Just threw her stuff in the front seat where the eldest was sitting, and took off.

Well done mom.

People like that should not breed.

And I'm going to finish my little rant, by saying one thing... for her kids' safety's sake, I pray the woman learns to use a car seat and figures out how to get her kids out of the damn car to shop. One day, it's going to be summer, and leaving kids in the car in summer can kill them in minutes.


Take your kids into the store with you people. It's not complicated, hard, and while it's not convenient, it's sure as hell better than something bad happening while you're shopping.  

Friday, December 4, 2015

Let's Play Catch Up!

Man oh man, it’s been a while, and I’m sorry about that. I’ve been swamped!

Let’s play catch up! We’re going to do a Chloe AND Rayne update that goes all the way back to October.

So, yeah Halloween. We had a freaking blast! Mike and I decided to do Batman and Harley Quinn, and the kids were Anna and Elsa!

 



And did I mention the 23 lbs of candy? Because… 23 lbs of candy.


November, mostly uneventful. Happy late Turkey day, by the way. Unfortunately November and Early December are my busiest times, hence why no new updates. But we had a few things.

First off, Chloe got a diagnosis, finally. She is definitely IGA deficient. All of their tests showed unreadable levels of IGA in her blood, meaning she has none. Makes sense, when you think about it, and fits everything. I’m just glad that almost a year later, we finally have an answer.


However, the downside is that sometimes, kids with IGA deficiency and ending up on the Autism spectrum go hand in hand. She’s being tested for that this month. That, also, makes sense… she has begun a lot of behaviors typical of a child who has Autism, specifically what used to be known as Asperger’s. She lines up toys, flaps her hands when over excited or stressed, rocks obsessively in her father’s or my grandfather’s rocking chair, doesn’t sleep well, and has sensory issues, such as texture problems with soft, mushy foods (she chokes on them) and issues with things like water touching her head (Bathtimes are no Bueno once we get to the hair…). She is in therapy though, so we’re hoping to get better as time goes on.


Rayne on the other hand has been in school, and has been hell on wheels. I hate that school… she is picking up some poor habits from her classmates… And her behavior has suffered for it. Maybe part of it is the age, but my little girl has become a complete sass mouth these last few months, and I do not like it.

That said, the last five weeks have been hell in their own right.

Chloe has been sick again. What was a cold, is now close to pneumonia. And I’ve taken her to the Dr. for it about 4 times… only after the last visit to a new pediatrician (her old pedi is closing her doors) did we get some relief in the form of Bromfed and Clairithromycin. You see, her old Dr., love her to death, was not a believer in medicines for children… so Chloe was just suffering through these viruses… and while I see her point, I was also tired of my baby suffering… and this time, she needed the meds that her other Dr. was simply not prescribing. Clairithromycin is an antibiotic that is so strong, it’s commonly used for Cystic Fibrosis and AIDS/HIV patients to fight off infections and keep them from getting pneumonia. It’s stronger than Azythromycin, Amoxicillin, and Cefdinir, all of which she is becoming resistant to. And the Bromfed is actually to dry up the mucus, because apparently her IGA deficiency also causes abnormal mucus production in her nasal passages.


Luckily, she is now perking up, but she was very close to a hospital stay. And that would be the second time in a month that she almost ended up there, because 2 weeks ago, she had a stomach flu so bad she was puking and had diarrhea for 48 hours and refused to eat or drink, and was throwing up water. She ended up in the Danville ER, passing out in my arms, and they told me it would be ‘a while’ before they got to her… aka, a 10 hour wait. I grabbed her, and my other half and I rushed her to South Boston/Halifax. It’s bad when the best care is 30 minutes in ANY direction away from the hospital that is literally 2 minutes down the road from me…  Rayne had the same thing at the same time as Chloe, so she was puking up her guts at the same time, but nowhere near as severe.

Chloe needed fluids that day in the hospital, and meds.

I AM planning to get back into this while on my winter break from classes! So expect some updates for the next month! I need to do this and get back to writing my fanfiction!! (Don't judge, I like to write.)


I’ll update on how Chloe’s doing soon! In the meantime… stay awesome, people! 

Saturday, October 3, 2015

Why the Mommy Wars are STUPID!

*Note, this does not include things that have been proven to be beneficial in one way and has no real refuting research claiming otherwise, such as rear-facing, which could save a life. Please, if you front face before age1 (legal age in many states) or 2 (RECOMMENDED age to Front face), look up internal decapitation… it can happen in an accident. Rear facing can save a child’s life. *


As all moms have experienced, everything we do is under a microscope. People without kids think we can do things differently or that their kids will NEVER do that, people who have special needs kids are judged by parents of non-special needs kids because they need to ‘control their kids’, but on the other hand, a mom who disciplines in a way that another mother disagrees with is judged for ‘hurting their kids emotionally”… it’s ridiculous. We’re mothers, and we are the most judgmental of the groups who judge mothers.


Why?

To make ourselves feel better? “Oh my god, look at her… I don’t do that, and my kids are so much better for it!” If you need to put someone down to give your own ego a boost, that’s pretty bad. And we’re judged from both sides, so no matter what you choose, you’re considered by SOMEONE to be wrong.


- It doesn’t matter HOW the baby is fed, just that it is fed!


Seriously, why does it matter HOW the baby is fed? Breast milk is wonderful, but it’s also not your boobs and not your choice to make for someone else’s kid. Yeah, there are options. You could get milk from a bank, sure. What if they… dun dun dun… don’t WANT to? Oh my GOD, that’s horrible! How can they give a baby formula?? It’s like… poison! Even though it doesn’t harm babies at all, it’s still poison because it’s not ORGANIC and doesn’t come from a breast!!! On the other hand… who wants to see a tit out all day? Cover that up! Go sit in the bathroom to feed! Your kid doesn’t like a cover? Then make a bottle and shut up!

…No. It shouldn’t matter. Feed your child in whatever way you can, whatever way you can afford to, and however keeps your baby full, growing, healthy, and happy.

- Vaccination and Circumcision are personal medical choices that parents have to make!


How can you pump toxins into your baby??
Well, how can you NOT protect your child against various debilitating diseases??
You cut your son’s penis because your pedi told you it was better? Do some research.
You left your son intact?? It’s nowhere near as clean as having him circumcised.
Both sides : DO YOUR RESEARCH!!!

However, there’s really good research for BOTH sides of the argument here. There’s also very biased research for both sides, and for some, it’s tough to sift through the trash and find the diamonds in the rough. This is a medical choice that a family has to make, and their decision does not affect you in any way, shape, or form. Does them vaccinating or circumcising their child affect you, 100 miles away, person online that will never meet this other mom? No. Do I agree with some of it? No, but I make sure my kids are medically cared for in a way I deem appropriate, and then I move on.

- Cloth or Pampers, all diapers are there to do is to catch poop and pee!


Seriously… why does it matter what someone uses to catch their child’s waste in? Some people hold their kids over a toilet and go by cues when the kid needs to potty… No, seriously… look it up. It’s called Elimination Communication. Anyhow, yeah, I mean cloth is better for the environment, but cloth diapering moms, you had better be recycling everything, driving an electric car, and for that matter, not even washing clothes with regular dish soap. If not, you could be damaging the environment. And you have no idea if that mom using pampers is actually recycling or what is going on in their personal life. It’s not on your baby’s butt. So butt out.

- Stay at Home or Work, As long as bills are paid, who cares!


Both sides have advantages. Stay at home moms are there, all the time, and are watching their children grow and helping them learn regularly. They’re going to parks, malls, and other activities with their kids. That said, Working moms are bringing in money, get a small break from the monotony, and spending quality time with their kids when they get home. Why does it matter who is watching the children, as long as they are safely being monitored? They’re in daycare? Ok, and that is your business why?

“Well they put it on the internet, that makes it everyone’s business!”

No. It being on the internet does not mean it affects you or is your business in any way.

- Sleep Training : Not your problem to worry about!


Cry it out, or attachment? While there are studies on both, go on and do your research, and then if you feel the need… share. And you know what you do then? You let them do what they deem necessary. Another mom’s sleep training habits do not affect you.

- Co-Sleeping or a Crib… does it matter?


Again… where that child sleeps at night does not affect you in any way. If they’re in a crib, they have risks. There are also risks when you Co-sleep. While it is great to be concerned for someone else’s child and have empathy for them, but to be a sanctimommy on social media because someone raises their child differently than you do, is ridiculous.

- Epidural or Natural… when it comes from between your legs, you can decide.


Yeah, yeah, I know. Who wants to drug up their baby, all natural is the way to go. But, what if they can’t handle the pain?

“Shouldn’t have gotten knocked up, if you can’t handle childbirth!”


First off… no. You don’t get to tell someone what they can or cannot do with their own body. Second, if you haven’t given birth, you have no business saying anything. Third, if you HAVE given birth, kudos to you if you managed to go drug-free. But others cannot handle that and that is OK. Don’t worry about how someone else decides to push their crotch-fruit from their womb. Worry about your own labor. You go ahead and use your zen candles. Let them have their epidural in peace.

- C-section or Vaginal: As long as the baby is born healthy, why does it matter?


Don’t get me started here…

“C-section moms aren’t REAL moms because they didn’t actually give birth!”
“C-section moms took the easy way out!”
“C-section moms are lazy! Give birth the way you were meant to!”
“C-section moms are overbearing, having to plan every detail all the way down to the birth day!”

Blah blah blah.

C-sections are not easy, fyi. They are far from it. It’s someone strapping you to a table like you’re Christ himself on the cross, and slicing you open like a turkey. It’s a needle being shoved into your spine and left there to help numb you. It’s being awake through major surgery while someone plays Operation with your guts and moves them around. It’s being so groggy after that you may not be able to bond right away with baby. It’s possibly being unable and not allowed to hold your baby after birth. It’s terror as you feel someone’s hands in your stomach and intestinal area, praying the numbing blockers don’t wear off mid-surgery. It’s only being allowed one family member in the operating theater. It’s not getting to have the Vaginal birth you may have wanted. It’s having to walk with a pillow shoved to your stomach for up to 3 weeks after birth, depending on how you heal. It’s a potential infection and future pain. It’s a difficulty in doing things with your child for weeks later.

It’s not lazy, easy, or wrong. Sometimes it is the only way.

As for the real moms comment… Anyone who has a child in any way is a real mom. You don’t dictate who is or is not a ‘REAL’ mom based on your meager expectations of ‘real mothers’.

- Discipline: You handle your kid, let other moms worry about theirs!


“That mom is shouting at her kid!”
“She spanked her child! Oh my GOD!”
“She just put that child in time out? For shame, that poor kid!”
“She’s embarrassing that child in front of their friends, the poor thing…”
“She’s not doing anything? What a lazy woman, raising little brats.”


The point? No matter WHAT you do, someone’s going to judge. So just do what feels right for your family, and don’t worry what the mom who disagrees with your choices does for theirs. 

Wednesday, September 30, 2015

Count this as an RSVP, we WILL be there! 6 reasons we WILL make your event!

Yesterday, I came across a post titled '6 Reasons My Husband and I Probably Won't Make Your Event, and Why We Don't Want You to Take it Personal...' While reading it through, I was battling a headache that came to a peak last night and turned into a full blown, category 5 hurricane Migraine with little tropical storm bursts of nausea. Fun fun. I was also making plans for the next day... clean the house on my day off from school... get my homework done... get the big little to school, and monitor the littlest little's rash... color a friend's hair and help her trim her infant's nails since it makes her nervous... will I head to the store? Who knows. 

Anyhow, it got me thinking... we've attended a lot of events over the past few years... weddings, baby showers, dinners, graduations, senior pinnings, and more. I can't fathom using my kids as a never ending excuse as to why both of us cannot attend, or even one of us. It blows my mind... We have to teach them to act at these events, or they will not know what behaviors are expected of them. It's why we take them out to eat when we can. Anyhow, we always take them to events when we can. Our friends have never had an issue with it, and while illnesses do come up, with the littlest little's immune deficiency, we still make it so that ONE person, generally, will attend if at all possible. Why? Because you put too much time and money into your event for us to dip out last minute. It's even worse when we RSVP. 

RSVP's are your guarantee that, as long as no one is deathly ill, you will be there. You do not send it in if you think you may flake out. The person throwing the event is dishing out serious money to provide food for you, in the case of an RSVP, or is reserving you a space that they are paying for. (Sometimes you will have to pay your own meal) If someone is asking for an RSVP so they know what they will need to purchase, for, say, a wedding... you do not dip out because you don't feel like dealing with the random crap that comes up with being an adult, or because you wanna be a 2 year old and say "But I don't wanna!" You suck it up and go, because you have already put down that you will be there. Don't be rude, or a douche bag, and yes, this makes you a douche bag. Kids or not. If someone is forking money for you to attend and you dip out last minute, then you're a douche. 


My big little dancing with her Aunt Taylor at her wedding.
 Proof that kids can do events too. 

So, here are my rebuttals to the arguments in the blog above. 

  1 -      WE HAVE KIDS! So, they will want to see you, and since they need to learn acceptable behaviors in public places, they will also be attending as long as you are alright with that. Oh, and don’t worry about random things that happen… aside from illnesses, which we don’t want to spread and don’t want the littles to catch, a blow-out diaper can be changed, clothes can be changed and washed, and entertainment items can be brought for the littles. We can even manage to keep the littlest little occupied after a nap gone awry and keep her from whining the whole time, generally speaking. It’s amazing what some attention and a coloring book or a snack can do for a whiny child.

  2 -      We are TIRED!!! However, this is not your problem, and we should not miss a big event in your life because we don’t want to be adults today. We can take some vitamin B12, chug a Monster or a coffee, and we can attend, at least for a short while. We feel as though your company is more important than Netflix and Chill. Even though we are very busy with two kids, one who is special needs in multiple departments and one in pre-k, after school events for the bigger little, University for me, and full time work for him, plus general housekeeping, we will still bite the bullet and support you or spend time with you, because you are important to us.

  3 -      We DON”T HAVE A BABYSITTER!! That means that the littles will be there as well, and if that’s ok with you, that is ok with us. We, again, use events like these to teach our kids how to behave. We don’t do house parties, clubbing, or things like that, so if that’s what your event is, then we will respectfully decline, but only because we do not personally go to those anymore. We’re grown adults with responsibilities, and we can’t be out all night, and we don’t even drink anymore. We’re lame, you don’t want us at your party, lol. That said, any other event that kids can attend, like, say, a dinner, well… if you are good with it, so are we. The littles would love to see you! 

  4 -      If ONE of us can’t attend… then the other will attend. I mean, we’re not Siamese twins, we’re not super glued together. One of us will be glad to support you in the event we both cannot. It makes us no less of a pair, or a team, but it means that every once in a while we can peel apart the PB&J sandwich and be a PB or a J sandwich without it being the end of the world. The one who does attend will give you lots of love from the one who cannot be there, and will probably head home early to assist the other one who is not there, but someone will be there. We may even split the littles up and one will be home, while the other comes to wish you well with your life event!!

  5 -      We actually DO have a FINANCIAL BUDGET and RESPONSIBILITIES!!! That said, if we know in advance, throwing 10 bucks aside every week to save up is not tough. We can do it for things we want to do, like trips to AwesomeCon, so we can do it for you, our friend. We love you and we will do all in our power to put aside the amount that we would spend on coffee or work lunch or some other thing we spend our spare cash on, and will get our needs, and then we will do all we can to be there. 


  6 -      WE JUST DON’T WANT TO GO! That said, as adults, we have things we don’t feel like doing every day. It’s time to pull the big girl panties up and be a grown up, and show some support for you, because you do the same for us. We can spend time together during and after the event, it’s not like you’re separating us in different rooms and saying “NO, you stay away from each other!”. You want us there together. You care enough about our family to invite us all, including the littles. We will reciprocate that love and be there. 

   Look, sometimes things DO happen. Stuff comes up. I get that. I've had it happen, as I said I have a special needs kid, trust me it happens. That said, I also know that by RSVPing I have said I will attend. My kids do not give me special rights to dip out last minute and not look like a pretentious douche. As a parent, I work around my kids. I bring them with me. I ask one of the 2 or 3 people I trust on the regular to watch my kids, if they can. If not, then Mike will go without me, or I will go without him. It's not hard. It's part of being a parent, and it's part of being an adult. Which is something more people should try sometimes.



Saturday, September 19, 2015

Why staying educated on your child's health is important.

Long time, no blog…at least for me that’s how it feels. I’ve been super busy with school and the kids and doing some fun things with them.

Anyhow, this is a good and a bad blog entry.

We have a diagnosis. A tentative one, at least… One that is being 100% verified and retested in October, but still, a diagnosis.


After almost a full year of testing, blood draws, and pretty much torture… after a year and a half of constantly being sick… after a surgery to help her with ear infections and the speech delay that has accompanied them… we now know something.

Getting ready for her surgery

Chloe has a Selective IGA Deficiency.

My last entry, or one of the last ones I’ve done, I mentioned having Chloe at the Dr. again, which is not a big deal because she’s in and out of ERs and Dr. offices… However, during that visit, we did a blood draw. That blood draw was the missing puzzle piece, so to speak. Her IGA levels were in the toilet. The test does not give you a definitive number below 7, due to how hard it is to read, right? Well her levels were 5. Anything under 20 is a deficiency. Anything 7 or under is considered to be SIGAD. Basically, her first part of her immune system, the part that stops her from being sick, is pretty much non-existent. Hence why she has always been sick, and why she has had so many ear and respiratory infections, and her asthma and allergies, and even her tummy issues. It’s all linked to this immunodeficiency.

There is no real treatment.

There is no cure.

It is a forever diagnosis.

 

She cannot have blood transfusions unless it has been washed of its IGA. She will have to be monitored, because this deficiency can later lead into lupus and leukemia and a slew of other immunoglobulin and blood disorders. She needs a medical alert bracelet. She is higher risk of pneumonia, and her live-virus vaccines will make her sick, as her body attacks them full force.

But, it is manageable.

We can do what we have been doing to manage this. We were told that the fact that she has not had pneumonia at this point in her life yet is a testament to how on top of things we have been. She cannot have more live-virus vaccines, but her dead virus vaccines she is more than able to have, and are in fact her friend. She can still do fun things, she just needs to be sanitized some while she’s riding rides and things of that nature.

She can go to school later on in her life, but she will be sick more than other kids.

Yes, she has a harness, and before anyone asks, it's because she's still having
communication issues. She still holds hands, but it's an extra line
of defense. No, I didn't ask for your opinion on harnesses, thanks.

And I have to admit, while knowing it’s permanent with no real treatment scares and hurts me as a mother, at least we know what we’re dealing with. Her language skills are improving every day, and she’s hopefully going to catch up in her self-help skills soon.

And she is, despite the hell her body is going through, happy.

Kids like her are the ones I feel the worst for… the ones with an invisible illness. The ones who get written off by people who are not around her all the time, who are told , “it’s no big deal” or “you’ll get better!” . No… please don’t tell my child she will get better. Don’t tell her you will pray and God will heal her. Don’t tell her that if she prays hard enough or eats better that she will be better at some point… because that’s not how her illness works. And you are not the one who will deal with her disappointment when she is old enough to realize that she is not getting better no matter what she does.

This is not a face I like seeing people...
Don't make her make this face, please.

And to any mothers who think something is wrong with their child in their gut and is being written off… don’t let anyone write you off. Push the issue. Push the doctors. If I had listened to my first pediatrician, I would have no idea what’s wrong with my child right now. If I had listened to the first two immunologists, I wouldn’t have a diagnosis. All it took was one Immunoglobulin count to not be run… IGG, IGM, and IGE were all run and normal, so no one checked her IGA. That is actually common for her disorder, all other counts are usually normal except for that one, the IGA.

Oh and the kicker? It’s mostly considered a boy’s disorder. So while SIGAD is the more common of the immunodeficiencies, it is far rarer for girls to get it rather than boys. Note, I said rare. Not impossible. So while she is a rarity... it should not have been 100% overlooked like it was. No excuses. 


Anyhow, parents everywhere, if you ever see this post, what I want you to take away from it is not that you should not trust doctors… but that you should be diligent. You should do your own research and trust your gut if something feels truly off. You should take a very active role in your child’s health and well-being and not blindly follow the advice of physicians… remember, some physicians have not researched or looked up new studies in years. Before you do something that can make your child have later consequences, such as giving solids without a medical reason before 4-6 months… do your own research.


The phrase, “But my pedi said it’s ok!” should not be enough for you. You have all the information in the world at your fingertips, all you have to do is want to learn and be open to new info, and be open to making a decision that does not line up with your medical professional. You're the parent. It's your call. 

Monday, August 17, 2015

Today, My Baby Told Me Something...

I thought this was going to be a more somber entry, but, to be hones; it’s one of the better ones!

Today was the hardest day of my life so far… it was the day I handed my sedated child over to a nurse and had to walk away and take her fate, so to speak, out of my hands, allow someone to put her to sleep, and then cut into her to help her to not be in pain all of the time. I had to allow someone to cause her pain to stop her pain.

We got up at 4am, and told our oldest goodbye, that we would see her after school. Got ready to go, and then got the baby in the car and headed 40 minutes away to Martinsville, VA. We had done pre-op last week, so all we had to do is check in and wait. This was all the easy part… waiting in the room was the part where we could play a bit more, we could let her run a bit in her pink Minnie mouse socks and turtles jammies.


6:15 hit, and they brought us back to get her ready. It was a lot of waiting, and taking vitals… making sure that her allergies and her heart murmur were noted on their notes, and that they knew to watch and see if she had any reactions to the medications. She was attached to wired and a cuff, and she was not happy because she couldn’t be active. She was given a coloring book and crayons, to help pass the time.


And then 7:00 hit. She was given a medication cocktail of Tylenol and what equals out to baby valium, to sedate her and keep her calm. Watching the light begin to dull in her eyes was hard as hell, but tolerable because I was still there, I wasn’t yanked away yet. By 7:20, it was time to say bye-bye for now.

They let us walk her all the way to the O.R. We cuddled her, took turns while we walked, then we handed her over. That part killed me inside… it sounds stupid too. It’s a simple procedure, the whole thing took 5 minutes, and recovery took 35 minutes… but every procedure has risks. I broke into tears as I handed her to the nurse and she looked at me with her dulled eyes. She looked like a baby doll with no life in her, like a robot. No soul in her eyes, just going through the motions.

My hubby and I held hands on the way back to her room. We both were crying, me more than him, but that’s how hard it was for us. You don’t think you will be torn up, you think that because it’s a basic procedure that it won’t bother you… it does.

She did well, though. She was back in a total of 40 minutes. They cut into her eardrum to insert tubes to help her hear.


She came out of recovery quickly, and after a half an hour recovering in the room where we had been before, she was discharged. She was a bit nauseated from the anesthesia and a bit grumpy, but that was to be expected. They told us she did super. 

On the way home

And the look on her face when we spoke to her for the first time after… her eyes widened and she just looked at us.

Suddenly, our baby could hear properly.

And she began trying to mimic us an hour after that. The few words she said before the surgery were almost crisp and clear, and she was attempting new words.

Today, my baby tried to tell me she loved me for the first time.

That alone made everything worth it.


So she is recovering at home, her ears are bugging her but we’re keeping her on her pain medicine to help with that, but all in all… it was all totally worth it.