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!!

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! 

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. 

Sometimes things are not perfect

You know, when you go into this parenting thing, you’re not expecting to have a child who has special needs of any kind. You think, oh, I’m pregnant! I’m going to have this big ball of perfect who will sleep all night, play with me, and love me unconditionally. Then the baby is born, and you think, Oh, ok so it’s not like I expected, but that’s ok! It’s not that tough! It’ll get better.

You don’t expect there to be any issues, you think your kid will grow, go to school, and not need anything to help with that. He or she will develop to be perfect all on their own.

Except, sometimes they don’t. Chloe is one of those cases.

Chloe is 17 months old as of this month. She is happy, playful, and energetic, and smart too. She is also speech delayed severely, has allergies, asthma, a heart murmur, a childhood immune deficiency, and chronic severe respiratory and ear infections. She will get better, but she is also behind.

You see, when Chloe was an infant, her respiratory infections caused ear infections. Her doctor never told me she was having these infections as bad as she was, and downplayed it. At 10 months old, when she was hospitalized for a stomach issue, we discovered a symptom to the immune issue. We changed doctors after another poor visit, and keep in mind, we had about 35+ visits to the same doctor in 10 months. This new doctor found the heart murmur (confirmed by cardiology), and she sent us where we needed to go… to specialists. After 8 months, we have some results. But now we have to fix the damage that not finding it for so long has caused.

Chloe at around 12 months. Cardiology Appt.

Breathing Treatments for asthma and allergies. 

Chloe hears things as if she is underwater half of the time, because she is. Her tubes in her ears are often filled with fluid. When you get an ear infection, the infection itself can go away in a week or so, but the fluid stays for up to 6 weeks. All those infections made her not hear things correctly. We noticed at 12 months old that she was behind, but we were in denial and kept hoping she would perk up. She would get better. For the record, please don’t tell someone who tells you that their kid has a problem that can affect them long term that their child will grow out of it… you are not a doctor, and that parent is often not looking for that response… they are informing you of their child’s health. Just an FYI from someone who has been there.

At around 11 months, during a hospital stay

At 15 months she was not better. She was mostly non-verbal, and knew one word: Daddy. It was time to see Early Intervention. Luckily, she qualified, and was quickly gotten set up with speech therapy. They will have their first official therapy session in 2 weeks.

Today, we had to go to the doctor’s office. 4 days ago I had to take Chloe to the urgent care for yet another ear infection. It sucked but, you know, you do what you have to do. You know you’re in the doctor’s office too much when all the staff knows you by name. She’d been on antibiotics for days at this point, so I figured she’d be a bit better.

Nope. So much nope.

You know, it really sucks to see your kid go through hell and not be able to help or really know what’s going on, or even be able to communicate with them…

Doctor checked her out, and her ears are highly severely infected. So her antibiotics have done nothing. Her eardrums are warped and her ear hairs have no movement to them, so there’s fluid in her ears, again, and it’s bad, again. She is in severe pain, and we never noticed because we thought it was another tantrum, that she was just cranky. Talk about feeling like shit. (For those of you who can communicate with your kids, please be so, so grateful you can actually do that…)

Us, today. Before I felt like crap because I found out she was still hurting...

Going out to places sucks, by the way, because of people who aren’t in our lives. We have to raise our voices a LOT to get Chloe to hear us and understand us, and we get looks like we are Satan incarnate because of it. Yet, if we allow her to tantrum and not correct her, we get those same looks. I hear myself constantly explaining to strangers who don’t matter that, “I’m sorry, she can’t hear us, we’re trying…” Traditional discipline does not work with her, because she cannot hear us properly to understand us. So, keep in mind when you see that kid throwing a tantrum in the mall, the mom raising her voice, the 6 year old in the stroller, the child on a harness… you do not know their life, or why that child is doing what they are doing. Special needs hides in children who do not look like they have special needs.

I mean, look at this kid. On the outside, you would never know she has any issues.

So now we’re waiting to see ENT (Ear Nose and Throat for those of you who are not specialist-slang savvy) to get a surgery date to put tubes in. Hopefully, even if it does not help with her speech, it WILL help with her pain. All I want is for her to not think that pain is normal…

I guess this turned into a rant and a bit of a preachy blog as well. Oh well. In all seriousness though… my kid is loved. She is perfect to me. She is also special needs. It makes her no less loved, it does not make her get away with murder, and it does not make her spoiled, entitled, bratty, obnoxious, or lacking of manners. It makes her need discipline that you may not understand, and a gentler hand to handle her tantrums, which come from a place of pure frustration and not being a brat. 

In over my head…

Last month, my other half and I found out that our daughter, who we suspected had health issues, was worse off than we had initially thought. We’re actually still on the road to answers, but so far, we’ve found out that she has an immune deficiency, severe allergies to some foods and some animal dander (dog, specifically), and a heart murmur, which is functional.

This last weekend, we also discovered she’s having seizures. They called them Focal Seizures, and for her, they seem to occur mostly when waking, and generally, it’s shaking/convulsions, spacing out, and loss of hand-eye coordination and control. We rushed her to the ER when it was so bad that she couldn’t even lift a banana to her mouth without shaking and missing, and was falling over because her arm buckled under her.

We’re exhausted, all of us. Her big sister is worried but also doesn’t fully understand. She wants to play more with her, but she can’t. She wants to know why her baby sister can’t have any milk, or pickles, watermelon, etc. Why we can’t bring those foods in the house anymore, and why she has to wash everything after eating them elsewhere.

How do you explain to a 3 year old that her sister just can’t have them and make them understand it?

She has to see so many specialists that my head is reeling. Immunologist, Cardiologist, and now possibly a Neurologist for her seizures and G.I. Specialist for her lactose intolerance.

And on top of all of this, I’m in the middle of my Spring semester of University, for my Teaching license, a Bachelor’s Degree in Elementary Education. I’m overwhelmed. I feel like my head is going to explode with all the possible disorders that I’m having to learn about, and all of the things I have to tell new doctors when she has to go to an ER. My day to day life is me juggling nebulizer treatments, disinfecting the house, double the daily cleaning since she can’t be exposed to allergens, disinfecting her toys, spraying her bed and toys with allergen reducer, doctor’s appointments, and finding a way to study. Hell, that’s why I’m awake right now… I was studying and doing homework and couldn’t sleep after.

And through all of this… all we want are some answers. We just want to get her on a treatment that will do more permanent good.

We believe in vaccinations… well, her previous vaccines may not have even done her any good. Future ones could cause reactions, so we have no idea if they can be given to her. And now we have to worry about measles, what with all the recent outbreaks.

I’m keeping up hope that things will get better. I keep making things more and more orderly, more clean, more sanitary, but it feels like a losing battle most days.

I’m lost, in so many ways. No one wants their child sick, it’s something I wouldn’t wish on my worst enemy.

I’m angry at her old pediatrician for ignoring me and not listening when I told her that my baby was sick

constantly, and delaying a diagnosis for months. I’m furious that she missed a heart murmur for 10 months. I want to go scream in her face, but that would solve nothing.

And all I can do is trudge on.

We have much more of a story to tell… Both my kids are strong.