Wednesday, August 28, 2013

Destructo and FPIES, Part Three of Three

So the rest of the winter of 2010 passed more or less, without incident for Destructo. He remained on Nutramigen but battled reflux, head to toe eczema, and didn't sleep like a baby should. Regardless, we thought he was still meeting milestones and at his four month well check in April 2010 we got the go-ahead to start him on solids. We started with homemade pureed apples and pears and he did well with them, no issues. He also saw a dermatologist during the first half of April since his skin was so terrible.

One Saturday I was a bridesmaid at Destructo's godmother's wedding. Those few hours I was away from him getting ready and during the ceremony were the longest I'd been away from since he was born! I was quite anxious about it, actually!

The day after my friend's wedding we decided to introduce peas to Destructo. He loved them and ate all four ounces. Two hours later, he began dehydrating again. Back to the ER, and this time I called the pediatrician's office to let them know we were on our way there. One of the nurses in the ER, who remembered our previous visits, was the first person I remember to make the connection that soy and peas were both in the legume family. Since then...no legumes for Destructo.

Fortunately, Destructo did not react as badly to the peas as he did to soy. We did not have to transfer to the children's hospital, and said two nights and three days at the local hospital just for observation and rehydration. The first night we were there, Dr. C came in with a can of Neocate Infant and told me that it was an even more gentle and hypoallergenic formula than the Nutramigen. We started him on it the next day after he kept Pedialyte down. By the next day almost all of his eczema had cleared up. I eventually learned that Nutramigen still contained soy and dairy derivatives. After a few weeks, we noticed his reflux had improved a little too.

In July we finally got to see an allergist, when Destructo was about eight months old. The first and second rounds of bloodwork showed no IgE allergy to soy or peas. "IgE?" you say? "What is IgE"? For anyone who has ever gone to an allergist and gotten blood work or a prick test done, these tests are to test Immunoglobulin E (IgE) levels, and it is type of protein in blood plasma that acts as an antibody to activate allergic reactions. About 50% of patients with allergic disorders have increased IgE levels in their blood serum. People who need

EpiPens for bug bite or peanut allergies have IgE reactions that cause life threatening reactions. Anyway, the allergist had a feeling that Destructo's allergy to soy had something to do with his GI tract so she referred us to a gastroenterologist.

This is when I started obsessing collecting my son's medical records. I was fortunate enough that my son's doctor's did not charge a cent for this.

Sometime between seeing the allergist and gastroenterologist I had been utilizing Dr. Google since waiting was giving me no answer. That was when I discovered FPIES. Then, after getting Destructo's records from the allergist, she had also mentioned it. At this point his normal pediatricians had only diagnosed him with MSPI.

So when we saw gastroenterologist that August, I asked him about FPIES. He told me it was very possible that Destructo had it; however it was a clinical diagnosis; they had to rule out other things and pretty much diagnose it by process of elimination. So aside from his medical history, the GI said the next step was an upper endoscopy. At this point Destructo was only nine months old and since we knew his triggers, he wanted to put it off until he was a little older.

And I learned that FPIES is different than IgE allergies. It is a T-cell mediated allergy. I can't explain it better than that, but this is why the soy and peas did not show up in his allergy blood work or prick tests.

That December, Destructo did have another hospital stay...but only because the stomach flu stomped through our household, saving only my father. So we did stay in the local hospital for three days, his pediatricians admitted him just to be safe and considering his medical history. In fact, the bug hit me while I was in the hospital with Destructo, and at one point Gramma D was downstairs with my brother in the ER who was getting treated with IV fluids. At least they let her come upstairs and visit us in the middle of the night. There were several nurses who remembered our previous visits and were very sweet to us. The day we were discharged Thomas was very energetic, and we took a few walks around the small ward, which was a little tricky given that he was still attached to the IV!


They had to bandage his hand to keep him from pulling the IV out. Also, you can kind of see how big his head was at 13 months old. And...the hospital, had very old drop side metal baby cage hospital beds.

Fast forward to May 2011. I'd been fighting to get insurance coverage for the toddler version of formula (Neocate Junior). I did eventually figure out my way through the red tape. I knew it was covered by law in our state. But during this process, I talked the gastroenterologist into the endoscopy, because if I had a diagnosis it would help with medical necessity. He agreed. May 2, Destructo had his upper endoscopy at the children's hospital, to rule out celiac disease and Eosinophilic esophagitis. He came out of the procedure saying other than a little bit of irritation from his reflux, everything looked perfect. Barring anything unusual coming back from the biopsies, he was certain Destructo had FPIES.

Once we got the insurance coverage for the Neocate Junior, his reflux disappeared over night. Wondering why, I compared labels. The infant version had 6% soy; the toddler version had none. That 6% was not enough to hurt Destructo, but apparently enough to give him reflux.

And it was also around this time that we started Early Invention for Destructo, but that is an entry for another day. :)

Tuesday, August 27, 2013

Death, Milestones, and Wrestling... Just Another Day, Here.

The past few days have been an utter whirlwind. Milestones have been met, had to bury a beloved family member, had relatives over…whew.

First, we had to bury my husband’s grandfather. I loved that man. He was from Cajun country and still carried his accent. The moment he found out that I loved to cook, it was an instant bond. He had a great sense of humor. But his pride and joy was his family and every holiday spent with him, he considered a blessing. The holidays just aren’t going to be the same without him.

As much as it sucks for the reason, I was able to see my husband's extended family that I don't get to see very often. I love his family. Their crazy meshes well with mine. It's like I've known them all my life. I was just "meant" to be a part of that family. I also got to meet family members I never have before. And much like the rest of his family, I felt an instant kinship. It made me wish we weren't so spread out. It would make the holidays that much more special, for me.

Family means a lot to me. It was something that was drummed into me as a child. My mother would tell me "Without family, you don't have much." We may be a bucket of crazy in a sandbox of weird, but we're all close and stick together.

So…milestones. Yeah, we had a few. Monkey was able to run through the grass without complaining. Usually, it’s me setting him down on the ground with him, minutes later, running up to me to pick him up. This time, he just played with the grass, his siblings, and was very relaxed outside. Aside from his aversion to the grass, he also is auditory defensive. Outside really kicks up the anxiety for him so when I see him enjoying himself, it’s a rare pleasure. May this be the first of many.

Pixie has been upping her vocabulary. She now sings “Elmo’s World”, among other things. Today, I had to keep her out of the kitchen while I was cutting up the watermelon. She’s such an inquisitive creature, but I was afraid she’d grab at the wrong time and it’d be a trip to the ER to mend whatever wound her curiosity brought on.

So, I took pipe cleaners and used them to keep the gate to the kitchen closed. She looked at me and asked “What’s that?”

I know I’m probably going to get a few head nods…but when your mostly non verbal child comes out with appropriate speech, sometimes it takes a few moments to register “Did that really just happen?” I blinked for a few moments, processing the new sentence she gave me.

I swear, she must think I’m a dolt. Every time she lays out a new phrase or sentence, it takes me a bit to respond.

“Uh… it’s pipe cleaners, Sugar Pop. It’s to keep the gate closed so that you don’t get in the kitchen while Mommy cuts up the watermelon.”

That answer seemed to suffice her, until the makeshift device was placed on the bars. Pixie LOVES puzzles and spends great lengths trying to figure out how things work. I knew this was going to be an uphill battle to keep her hands off of it. For one, it’s soft and fuzzy – one of the things she is drawn to – and another, it’s something for her to figure out.

It took a few stern “No touch!” statements from me and having to walk over the gate to sit her down when she became fixated again.

My grandmother walked into the kitchen and we talked for a few moments. I don’t know how she did it… Pixie managed to get in. It was her way of saying “You can’t keep me out.”

Most parents have to prepare their kids for the world. Not me. I have to prepare the world for my kids…and world, Princess Sugar Pop Prettyfeet, Pixie of the Wild Frontier…she will take the world by storm. You read it here first, folks.

Peanut starts Kindergarten this year. Finally, my NT will start putting his mark on the world. I felt so bad… he was confused as to why his brother and sister were younger and they started school first.

I told him, “I know it happened backwards, sweetheart, but your brother and sister need a little help to get them where you’re going to be.” Whether he understood or not, is another matter. I suspect he did…he’s a bright kid.

And lastly… Pixie got a surprise today. My brother (I will call him Uncle Kryimm on here) is a professional wrestler for an independent circuit, near where I live. I am a VERY proud sister and always thought it was awesome that my brother is a celebrity. Bias aside, they are amazing to watch and I am always entertained when I get to review a match.

Anyway… Uncle Kryimm is part of a tag team and has a manager. They were on the local news station and I had put their news clip on the big screen TV for Peanut to see. (He’s very proud of his uncle, too, and thinks “It’s super cool” that his uncle is a wrestler.)

So, this link (https://www.youtube.com/watch?v=Gt_1x-PVvKg&feature=youtube_gdata_player) was put on the TV and Pixie comes running down the hall just in time to see Uncle Kryimm wrestling in the ring. She. Flipped. Out. (The good kind.) Flapping hands, jumping, giggling, and dancing galore.

If it’s “Pixie Approved”, you can bet it’s either worth a taste (if it’s got to do with food) or worth a look.
And now that it’s night time and my 3 ring circus has been put to sleep, I am off to put my feet up, eat some watermelon, and watch some mindless bad TV.

Your Southern Ringmaster,
MommaDe

Sunday, August 25, 2013

Destructo and FPIES, Part Two of Three

This post is an edited version of events from this old place called Livejournal, which existed before Blogger. Basically updating my point of view to save on typing. It's not easy to type up a long blog when your spectrum kiddo has popped off half the keyboard on your laptop. ;)


At the end of January, 2010, Destructo ended up back in the hospital. On a Monday night, I ran out of the Nutramigen formula he was put on after his first hospital stay and gave him one four ounce bottle of Similac soy, since he didn't have a problem with it when he was two weeks old. I just needed something to hold him over until we could get more Nutramigen.


Within an hour he was throwing up. Couldn't even keep Pedialyte down.


Fearing a repeat of six weeks previous, at two in the morning my mother and I rushed right to the hospital (only one town over, thankfully). The ER there even called our pediatrician, Dr. A, who rushed right there (he was my pediatrician as well). Our pediatricians has been keeping a close eye on Destructo since that terrible time right before Christmas. I remember him asking why I didn't call him first, he could have met us here; I told him I was afraid the night answering service would tell me not to come to the ER and wait until morning like they did last time. He said they wouldn't do that to us again.


At one point in the ER his heart rate shot up to 217 BPM and it took a while to get it down. Also, his bowels emptied to the point where I was sure he was shedding the mucus lining of his intestines, because there was no way so much could come out of a twelve pound, twelve week old baby. Dr. A was adamant dehydration shouldn't cause that, or a reaction to formula. The formula might cause what is happening to him, but it not the cause by itself. The decision was made to transfer Destructo to Westchester again, except we went by ambulance this time since his dehydration wasn't as bad. Also it was windy. I was able to ride in the ambulance.


Our wonderful pediatrician also told the hospital to admit us and start running tests, and not just treat him and send him home. We had to wait several hours in the ER for a bed to open upstairs. Later on we saw the metabolic genetics doctor again, and I already had an appointment a few weeks later anyway. That doctor took me seriously about everything I had to say, and they had a GI doctor come up for a consult.


The GI doctor was an ass (and as I later found out, not even a pediatric GI). He said it's most likely a "bug" even though both bouts of dehydration were brought on by a change in diet. The doctor who makes rounds of the pediatric ward, who has seen him since he was brought into the Westchester ER on Tuesday disagreed with the GI doctor. Her and the metabolic doctor are leaning towards a severe allergic reaction especially given family history but they admit it could be something else; this made me happy because they are looking beyond the obvious answer, unlike the GI doctor.


They talked about getting a cardiologist consult but it never materialized. Our pediatrician was super concerned about the heart rate spike in the ER; it was just way too high for just slight dehydration. There is adult on-set heart disease on my mother's side of the family; but you never know if my son will decide to break the mold.


My mother (I'll call her Gramma D in this blog) spent the the first two nights in the hospital with me, and a few hours after she left my husband showed up. A high school friend also showed up and brought me food.



Destructo clinging to Daddy


They took Destructo off his IV fluids for a few hours to see how he did, and he did pretty good. Despite how sick he was, he didn't sleep much. Every time I managed to get him to sleep, the nurses would come in to check his vitals. I spent a lot of time carrying him and walking the halls of the floor, singing the ABC song or Twinkle Twinkle Little Star, or whatever else my sleep deprived mind could manage to remember.


At this point it started to look like Destructo is allergic to soy. Even though he wasn't allergic to it when he was a week old, it could have happened anyway. His enzyme tests came back normal. And we can't test for it until he's older.


So I was told to keep Destructo on the Nutramigen. His godmother picked up two canisters of the powdered Nutramigen, that should help a lot. He had a great appetite in the hospital, but the bowels on the other end took about two weeks to return from a melted milkshake state to normal baby poop.


And even though they think there is nothing wrong with his heart, Destructo was supposed to get an EKG just to be safe because of that crazy spike in the ER at the local hospital. They gave the children's hospital one that was supposedly his, but the pediatrician said it had the wrong name on it. Now, the local hospital, being so tiny doesn't have the best reputation, and because the pediatrician is also from that area, she doesn't trust that they didn't screw up either. The hospital had us stay a few days beyond his improvement just to make sure he really was doing better before discharging us.


Friday, August 23, 2013

Destructo and FPIES, Part One of Three

In my first entry, I told you all about a gastrointestinal condition Destructo has called FPIES. It's been noted that many autistic people have some GI problems and or allergies, and my little guy doesn't appear to be an exception to that. What follows is how we found that out...


I had a normal pregnancy with Destructo. I had the flu when I was eight weeks pregnant, but my temperature never went above 101F. I lost weight but by my last doctor's visit before he was born I had gained quite a bit. I had a bit of induction because when my labor pains started, apparently I get sciatica, and I was a crazy woman. So on Destructo's due date, I was sent from the OB's office to the hospital, where they hooked me up to Pit, and broke my waters. Destructo was born a little before nine in the evening on a chilly November day.


What I remember most about Destructo being a baby is the crying. And crying. Also, he liked looking at shiny things--mainly, the bowling trophies that were on display behind the couch. He had terrible reflux. He'd sleep on my chest for hours on his belly but as soon as I'd lay him on his back the screaming would start. Unfortunately, I was a total failure at breastfeeding. I managed to pump for eleven days before I couldn't keep up with him anymore. We introduced soy formula before a short time before switching to a dairy based formula; I was on soy when I was a baby due to a dairy allergy. Thomas was on the dairy formula for a few weeks before his skin started to break out from it (which is exactly what happens to me!).


So we switched him back to soy formula when he was five weeks old. That weekend he proceeded to violently dehydrate from both ends, to put it politely. At the time, we weren't sure what was causing it. He'd had his two month shots two days previous. His godmother had been visiting, and she's a teacher. Everyone kept telling me, "Don't worry, babies throw up."


From that Friday to Sunday he couldn't keep anything down, though he did okay on Saturday and kept a little bit down. I brought him to the pediatrician on Sunday. Despite the fact that his temperature was 97.5F, traces of blood in his urine (it was in the front of the diaper and the doctor said he had probably pooped it), and had lost two pounds from the previous well-check on Tuesday, Dr. E sent me home with a hypoallergenic formula.


That night, Destructo nosedived. The diarrhea got worse. I was so sleep deprived I hadn't realized he was going into shock. Monday morning, when my husband and mother woke up, they saw how bad he was and called the doctor. Made an appointment for 11AM, then called back and said we needed to come in earlier since I was thinking of going to the emergency room. We went in at 9AM instead.


I saw a different pediatrician than the day before. Dr. D took one look at him and said he needed to go to the hospital--which was what I'd been wanting to do all weekend; but I have anxiety disorder myself so I kept telling myself I was overreacting. Destructo's soft spot had sunken in, he was gray, and he was extremely lethargic. We were close enough to the hospital that Dr. D said we could probably get to the local hospital faster than it would take for an ambulance to arrive, so that is what we did. Dr. J met us there. Dr. J bypassed the ER and had him admitted right to the children's ward (it was a small hospital). We found out he was borderline septic from being so dehydrated--called Metabolic Acidosis--his blood had become acidic from the dehydration.


The decision was made to transfer him to the local children's hospital. At the time we were living in downstate New York, and he was airlifted by helicopter to Maria Fareri Children's Hospital.



About to leave our local tiny hospital for Westchester.


We drove the hour or so there, after stopping at home to pack some clothes for us to stay in the hospital with him; they told us it would take some time to stabilize him before they'd let us in to see him. He was admitted right to the PICU. After we arrived the doctor told us they came very close to putting him on a ventilator, but he was a little fighter. And if it had been another few hours...



In the PICU.


Welcome to motherhood, right? Since we didn't know what was causing our little baby boy to dehydrate, we had to play it safe. We had to wear those sterile paper gowns and masks. They did a spinal tap to rule out meningitis. Cultures and blood tests all over the place. They even had to put an IV in a vein in his head because he was barely six weeks old and so dehydrated that they couldn't get any of the other veins. He also an ultrasound, though I can't quite remember why. He was also hooked up to heart monitors.


After two days, Destructo had improved enough to that he was moved to the normal children's floor. We saw a ton of doctors and residents. After a few more days of monitoring, we were sent home on Christmas Eve. Thank goodness.



That night, he smiled for the first time. Our Christmas that year was being able to bring Destructo home from the hospital.


When we were discharged, Destructo's insane dehydration was chalked up to a virus. But that was before the second hospital stay...which I will blog about tomorrow!

~High Functioning Mommy

Tuesday, August 20, 2013

High Functioning Mommy's Household

I am the other Mommy on this blog. I call myself High Functioning Mommy because I believe myself to be one of the under-diagnosed. I scored a 185 out of 200 on the Autism Quotient Test but I'll leave my dissection of that for another post. I'm 32 years old with two children, Destructo is my almost-four-year-old son and Jellybean is my five-month-old daughter. Also, I am an uncaffeinated Autism mother.

For now I will call my husband Grumpy Booth until he gives me another nickname. Ever watch the show Bones? Watching Brennan and Seely is like watching my husband and I. The normal emotional person versus the literal minded nerd. They misinterpret each other, they fight, they make up. But they love each other to death. When we first met, we bonded over Star Wars. Spent the next two weeks apart from each other. I was convinced I was going to marry him after that first day.

Destructo will be four this winter, and was diagnosed with Autism when he 21 months old. I believe he was autistic from birth; he is very typical of autistic children who have sensory processing issues and gastrointestinal problems. He has a condition called Food Protein Induced Enterocolitis Syndrome. I'm not going to get into it here, you can always check out the International Association for Food Protein Enterocolitis website for details, but suffice to say my son cannot have dairy or soy. Add to this Destructo's severe texture defensiveness and we have a little boy who only eats five foods. He is on a prescription amino-acid based formula to get the healthy calories he needs.

Food allergies aside, Destructo is speech delayed but appears to be academically ahead for his age. By the time he was two, he could recite the entire alphabet and count to ten. By the time he was three he was able to count to 20, count backwards from 15, and spell his name. He can't hold a conversation yet but he is in an amazing preschool program where he's made great progress in the past year. He receives physical, occupational, speech, and feeding therapy at school. I believe his speech development is around that of a two year old, because he will repeat anything he hears. Spontaneous speech has been improving very well over the past few months. He can even read a few words, his favorites being "surprise" and "stop" and he even uses them in context. My little Destructo is tall like Daddy and looks like Mommy.

Jellybean was born in just before spring. She looks just like her Daddy. She is the reason that this High Functioning Mommy is decaf as she's never had a drop of formula. So far, she appears to be a normal baby...which is a new experience for me! Jellybean's ability to sleep through the night was the first thing that confused me. Apparently babies DO sleep. I do find myself actually being able to enjoy her babyhood...I wish I could remember more of her big brother's but I was extremely sleep deprieved, and I still feel guilty about it. Anyway, I just know Jellybean and Destructo will have plenty to teach each other!

Right now we don't have any furry family members, hopefully that will change in the future!

So, that's us. And since it's taken me about four hours to type of this post between Destructo, Jellybean, and an overheating laptop with missing keys (courtesy of Destructo), Live Long and Prosper!

High Functioning Mommy

Oh Insurance Companies... How do I LOATHE thee? Let me count the ways... (MommaDe)

Ah... insurance companies. For anyone with children, they can be a nightmare. For anyone with special needs children, you sypmathize with a fellow parent's dilemma and come with your own baseball bat for good measure. This was my plight yesterday afternoon.

*Rubs Temples*

It shouldn't be this difficult to find a pediatric dentist. Really.

Peanut has lost his 4th tooth. He has is two bottom ones in already and the two tops are now missing. He lost his first one quite a while ago and nothing's popped through, yet. We want to make sure that everything is growing the way it should, before he starts school, ideally. If we can't get an appointment until late September or October, I'm not going to stress about it. Regardless, he needs to start getting used to going.

I decided that I would try that 1800Dentist number. I would explain that I'd need someone who also worked with special needs kids as Pixie and Monkey would be going sooner or later. Might as well get one doc that kills every bird with one stone. They gotta exist...right?

I sighed and checked the fridge to make sure my wine was chilling on the door. *Open* Yup, we're good.

I picked up the phone and dialed. I got a lovely woman on the phone. She was awesome and really made me feel like this process wasn't going to be as painful as I thought. I gave her the information she requested and when I gave her my insurance info, she stopped me and sighed. (Never a good sign.)

“I'm sorry. Aetna doesn't work with our referral service. You're going to have to call their customer service line and talk to someone on the phone to find one in your area.”

It was my turn to sigh. I replied, “I was hoping that wasn't going to happen. Getting someone on the phone, from there... I have a better chance of seeing God.”

She laughed. What a pity. I really liked her.

“Well, why don't you see if you can find a directory on their website.”, she offered.

Not a bad idea. I won't have to deal with their $#!^^% customer service. Fair enough. I said thanks for the help (because she really was helpful) and hopped on my laptop to further my search.

I should have known better. If their customer service is crappy, their website was probably going to be too. Yep. Totally. I needed a doctorate just to navigate the &!^(#.

I will say that their online booking is a neat idea. You don't have to talk to anyone. You find a doctor in your area, click on their name, and you are given their schedule where you can book your appointment right there. They don't offer any phone numbers to make sure that they've gotten it... but hey, baby steps, right??!

*eye twitch*

I take a name I found and put it through Google to see about getting a number. AHA! Score! I grabbed my phone and dialed. After the 5th ring, I got someone on the phone and proceeded to tell her my story and what I needed. I figured that even if that particular dentist couldn't help me, maybe they knew someone or they could refer to someone who could.

When I got to the words “Pediatric Dentist”, she stopped me and proceeded to talk over me. I hate that. Rudeness is probably one of my biggest pet peeves. It doesn't cost anyone anything to have a bit of manners. Being raised down south taught me a few and also taught me that it can be done, so when someone is rude to me, there's this automatic eye twitch that starts...

She mentioned something about not being able to help me because they no longer took in child patients. Ok... not a problem. But that was only half of the reason why I was calling her.

I said “Ma'am, if you would please listen to what I have to say and then reply, you would be able to give me the information I'm looking for.”

Apparently, that didn't float her skirt. Instead, it got her frillies in a wad.

“You need to go to your insurance provider's website and look up what you need...”

*sigh*

“Yes, ma'am, I know. I did that and that's how I was able to contact you. I went through their website. You were the first dentist that was closest to me. I understand that you don't work with children anymore, but maybe you know someone who....”

“Then you need to call your insurance provider's customer service line. I'm sorry, I can't help you.”

… *growls* ….

Really?...seriously? You couldn't take 5 minutes out of your day to not only LISTEN to what I'm trying to tell you, but point me into a direction or even give me a frakkin' phone number? I'm SO sorry that I am taking you out of your SUUUUPER busy day that a simple phone number is too much for you to do.

(Anyone who knows me personally can attest to the fact that I'm being extremely nice right now. I've got a rather unique grasp of adult language and find myself growing more creative with it every time I have to deal with rude prats or my insurance company.)

“Yeah. Thanks for the help.”, I said and hung up. I went to the fridge and opened up the door again. I looked down and patted the bottle waiting patiently for me. “All in due time, my darling.”

I sighed, grabbed my phone and a note pad, and mentally prepared myself to calling the insurance company.

Aetna has to be one of the worst insurance companies I have ever dealt with. I am CONSTANTLY having to argue with them on something. I swear, if they could argue about the color of the sky, they would. And I know damned well they have my name on some kind of list. They see my number and they hand me off to the newbie. Poor kid. Their turnaround must be record breaking.

The first phone call, naturally, didn't turn out so well. (Heh, why should it?) After going through their ridiculous automated system, giving a retina scan, a blood sample, a hair sample, showing my genealogy, and various smoke signals, I was placed on call only to wait 30 minutes and then get hung up on.

*eye twitch*

*looks at the fridge*

I called again and went through to their “Health Concierge” service, whateverTF that is. I spoke to some guy named Aaron. Cool people. I've never dealt with him before. Either he's new or he was the unlucky one that just happened to answer my call.

I explained calmly (and probably sounded exhausted in the process) my plight and what I've had to deal with over the last two hours. After I was done, he mentioned that he had a 6yr old. Awesomesauce. He *might* understand.

When I told him about Pixie and Monkey and said that I needed a Special Needs Pediatric Dentist, I could hear him faintly sigh.

No,no,no!!!! No sighing! We were doing so good....!

“I'm sorry “MommaDe”. I don't want to have to give you more bad news, but you're going to have to get a Primary Care Dentist before you can get a Pediatric one because they are considered specialists.

What? Seriously? I almost laughed at this point. They need specialists to deal with kids. HA! ...whatever...

My family (Mom and Grandmother) had been going to a particular dentist for years and when I was a teenager, I remember spending an entire summer in his chair because the hot mess that was my mouth.

Then Aaron proceeded to tell me that most PC dentists don't take a child so young and that I might have a problem finding one of those. I prayed, hoping my family's dentist was in network.

No. Of course not. Why would he be? That'd be easy. I swear Aetna either means “No” or “Difficult” in another language.

So... I'm no better off than when I started. Only now, I have got a stress headache and I'm down a half a bottle of wine. WOO! It's amazing I'm not on prescription meds.

Keeping It Real,
MommaDe

Monday, August 19, 2013

MommaDe's Household Glossary

Howdy, all. Just to give you a glossary of terms in regards to my household. For safety reasons, nicknames are only going to be allowed here.

MommaDe - That's me. H.B.I.C. as they say. I am currently 34, been married to my husband for 8 years (although been together for 15 years) and have 3 beautiful children. I also live with my grandmother, my mother, and two dogs. I was raised in VA so a lot of what I type might sound like it has a southern twang. I enjoy reading, writing, music, and when I have the time, video games.

The Hubs - My rock, my solace, my logic. He brings to the table everything I'm not. We compliment each other very well and have gotten to the point where I don't need to say much. He just "gets" me. He is an incredible husband, and just an outstanding father. They truly broke the mold when they made him. I am extremely blessed.

Peanut (AKA "Bubs") - He is my oldest and my "miracle" child. I was 6 1/2 months pregnant with him before I realized I was pregnant. He is 5 years old and my NT. Perfect and intelligent, empathic and giving... Teen years are just going to be OH so much fun with him, as I am not naive enough to think he will stay that way. I just have to remind myself of when he was this small. He is always available to give me a hug. He provides me with emotional strength. There will never be another like him. He has a very rare gift that when he talks, people WANT to listen. (Not just listen to a little kid to be nice...but really WANT to.) I hope he takes that gift and does something with it, someday.

SugarPop Prettyfeet (AKA Pixie) - She is currently 4 years old and I lovingly refer to her as Pixie. Her "happy place" is running barefoot in the grass, the wind in her hair, chasing butterflies and bubbles, while causing humorous mischief. ...a Pixie... She loves to eat bacon and oreos. She also loves music and that's how I get through to her. I "sing" everything to her. She was diagnosed with PDD NOS when she was almost 3. She received Early Intervention through the state and is now in a developmental preschool to get her the help she needs. She is partially verbal. She talks when she wants to, which is about 25% of the time. The other 75% I have to play detective to what she needs and wants. She is remarkable, though. She doesn't let anything slow her down. If she can't figure out how to ask for it or ask help with it, she figures out how to do it herself. Such a tenacious creature. I am constantly awed by her.

Lil Monkey (AKA Tiny Man, Little Man, or just Monkey) - It's funny how some people just "fit" their nicknames. And he does...completely. Right down to the sounds he makes. He is my youngest child, coming in at 3 years old. Yep, you read that right. I have "Irish Triplets".  He loves to climb, loves to eat bananas, and will squeak when you tickle him (which he just adores). Yep. Monkey. He has SPD (Sensory Processing Disorder). He is mostly non verbal, but we're working on that. He can say the important stuff right now, like "Momma", "Daddy", "Cookie", and "I want more." He also knows sign language that was carried over from his two older siblings (taught in the home). So at least I have a way to communicate with him and some of my sanity is kept. He keeps me laughing all day. I love his sense of humor.

Nana - My mom and my soundboard for everything "mother" related. Some people are just born to be mothers and she is one of them. She taught me everything I know about raising kids, cooking, and loving myself. I wouldn't be half of the adult I am without her.

Bokka - My grandmother. We live in her house (that's been in our family for almost 50 years now) and we moved in to help her take care of the place since she's getting too old to do it herself. She was diagnosed with colon cancer 2 years ago and has since kicked the crap out of it. Bokka is a word I came up with. When I was a kid, they tried to get me to say "grandma" and "Bokka" came out. It stuck and now my kids call her that, too. She wears the name like a badge of honor. I love that woman. She is strong willed, stubborn, and the epitome of what a "lady" should be. Adult conversations make her blush and I just think that's delicious.

Meister - He is our near 200lb English Mastiff and my children's "Champion". Ain't no one gettin' through that door that isn't supposed to be here and I don't envy the person who tries. His business end is no joke. But he is extremely gentle with my kids and lets them crawl all over him. Such a loving mushball. I love the big lug.

Loki - She is our 75lb pittie mix. She's such a happy little loaf... Initially, my brother was fostering her as she was an extreme emergency case. (Mom and rest of fam burned up in a house fire.) She had to be bottlefed for the first couple of weeks. The vet didn't think she'd make it. Meister took a strong liking to her and we didn't have the heart to give her up. She is the "sentinel" of the house, sounding the "Alarm Bark" when things are going awry. Again... I don't envy the person trying to break in this house.  She's certainly won me over and has earned her seat in my house. The only thing "vicious" about her, with my kids, is the licking she gives after dinner to help "clean up".

Well, there you have it. That's my household and all the chaos it brings. No two days are alike and oddly enough, I love it that way.

Holdin' down the fort,
MommaDe