Tuesday, October 29, 2013

It's a Wash.

Lots going on around the Jones house. Some of it good, some of it not-so-good--life's been kind of a wash lately. The good rubbing out the bad, and vice versa.  That sounds a tad depressing, but the depressing counteracts the exciting...you get the idea. Here's what I mean:

The good:  Amelia is learning so much! She's so curious about the world, which means she asks great questions. Lots of questions about people getting married (she insists she's marrying "Isaiah", a boy with whom she's had a special relationship for going on a year--I should probably meet him), why things happen in nature, etc.  She also suddenly has great listening comprehension. I can read harder books with fewer pictures, and she can answer really tough questions. The teacher in me can't help but be excited about this recent turn of events.

The bad:  Amelia has apparently picked up a pack-a-day smoking habit. Okay, maybe not, but she has developed a very, VERY nasty cough. It started about a week ago. I kept waiting for it to get better, and it kept...well...not getting better. In fact, it started sounding worse. Then, Marty got sick, which brought back lots of fun memories and fears, and I figured they were sharing the same awesome germs.  Marty went to the doctor (in a timely manner! Exciting!) and got some antibiotics, and then he got better. Amelia...well, she continued to hack incessantly.  The thing is, she wasn't running a fever! She didn't even act sick, with the exception of nighttime, when she coughed to the point of gagging--YAY!. Finally, I could take no more. Took her to the doctor yesterday, and found out that she doesn't seem to have an infection of the respiratory kind, but she did have a raging ear infection.  The doctor thinks the cough is allergy-related. He asked if we had a family history of allergies. Insert ridiculous-because-I-have-no-control-over-it-but-yet-it's-still-there mom guilt. I'm the most allergic human alive. So yes...she has allergies. We upped her dosage of Zyrtec, added regular inhaler use, and put her on the fun antibiotics that turns kids' poo red. Nice touch.

Yeah--it's a wash.

The good:  Anderson is a walking episode of "Kids Say the Funniest Things".  He comes up with things...I don't even know where he gets them. It's like he overhears snippets of conversation and stores them in his memory for later usage, then inserts them into his own talking whenever he sees fit--sometimes it might make sense, and sometimes it's just waaaaaay out there.  Lately, he's been VERY into cooking. Specifically, pretending to use the mixer to make mashed potatoes or cake. I actually own THREE mixers--one that works, one that is missing the beaters (which he calls "blenders") because he lost them, and one that broke from his rough handling. So, the two that are non-functional are his. He pretty much puts on a show worthy of Rachael Ray fame in the kitchen on the daily. I hear him in there, describing what he's doing, and it's so funny.  Yesterday, he was talking away while I was looking for something. I think he could sense my frustration, because suddenly he said, "Mom, you need to make a decision..."  Ummm...thanks? It was fantastic. Of course I laughed out loud, which of course makes him repeat whatever he says that is hilarious. He has no idea what a decision is. Trust me.  Another thing he says lately is "I'm the teacher, you're the kid"--which I'm sure comes from school.  When I questioned him further about what it means to be a teacher, he said, and I quote--"Teachers say EVERYTHING!"  Pretty sure he is implying that teachers talk a lot. But I think my absolute favorite conversation lately happened last week. Marty had a late meeting at work, and made the dreaded mistake of taking Tofu with him in the car. Bedtime came, and the boy was beside himself. Since it was obvious that he wasn't going to be able to settle in to bed, I told him he could get in bed with me until Daddy came home with Tofu. Now Anderson likes his bed; he was leery of getting in my bed but I assured him that I'd leave the lights on. So, he climbed in, and I went ahead with my nightly ritual of reading all of my blogs and then playing Candy Crush. I told him he had to rest his eyes and be quiet, so that his body could rest (I wanted him to get sleepy). He would lay there for a bit, quiet and still, then talk a little, mostly to himself. He told me his nose was itchy. I tried not to comment, so as not to break the quiet restfulness. Then, he says, "Yeah, I have a meeting tomorrow at school..." He knew Marty was at a meeting, so apparently he decided that he also had one. THEN...he goes on to add the following: "Tomorrow, I am going to wake up, and eat my breakfast, and scratch my nose with a toe-stick, and get my clothes on and start the car and go to my school meeting!"  Ummm, which item doesn't belong in that list? If you guessed toe-stick, you'd be right!  Toe-stick is an Anderson-ism for fingernail file.  He saw me giving myself a pedicure and it became a toe-stick. Now, why he'd want to scratch his nose with a toe-stick? That's beyond me. I guess he figured it was nice and scratchy. At that point, I laughed profusely, put the iPad down, and we talked and snuggled until Daddy brought home the much-missed Tofu. It was a memorable, sweet night.

The bad:  Anderson is having a pretty rough time in terms of sleeping and temper tantrums. Unfortunately, they have a reciprocal relationship--the less he sleeps, the more he has tantrums, and vice versa.  Anderson was ALWAYS my good sleeper. Always. Slept through the night early, never once fussed about being in his bed. I'm not saying he is always ready to go to bed when it's time, but he would sleep through the night with absolutely no problems. Until recently. He gets up anywhere between 4:30-6:00. When it wakes us up, we tell him to go back to bed, but I don't think he's always getting back to sleep. Sometimes, we don't hear him get up.  Marty found him laying on the floor outside of the guest bathroom one morning. The hard, laminate floor.  He's starting to get dark circles under his eyes. It worries me.  He's also having pretty severe tantrums.  Not violent--he's never been a violent kid at all--but all-out, on-the-floor screaming and crying tantrums. The kind that break my heart. However, two days ago, we decided to tell him that he had to go to his room if he was going to continue screaming and crying. He didn't go willingly, but for whatever reason, as soon as he got into his room and sat down, he was able to regain control.  The next two tantrums, I repeated the process.  We are also talking a lot about calming our body down by taking deep breaths. He does it on his own--and it is 100% adorable.  We are trying to give him practical strategies for dealing with his frustration.  I am not dumb enough to think that a little deep-breathing is always going to help, but if it works now? That's enough for me.

So--the good and the bad? It's a wash. Again.

The good?  Halloween is almost here.
The bad?  Anderson is convinced that he's wearing a costume that we do NOT have and are NOT going to get.

The good? The school-year is flying by!
The bad?  I'm so busy at work that I literally cannot keep my head above water. I have about 10 partially-finished tasks.

See how that works?  Waiting patiently for the day that the good outnumbers the bad!

Leaving you with a little funny from Amelia:

Me (to Amelia, as we listen to the song "The Jungle Sleeps Tonight" in the car): "We could watch the movie 'The Lion King' if you weren't such a Scaredy Cat!!"
Amelia: (silence...)
Amelia: "I'm not scared of cats!!!"

:-)  Enjoy the rest of the week! It's Red Ribbon week at school, which means we dress up differently every day. On Thursday, we are busting out the hideous formal dresses we've had lurking in our closets. Potential pictures to come...

Monday, October 21, 2013

They're MY Role Models...

I confess. I've been Scrooge already this year. October has been a busy month for us, and as of this past weekend, we hadn't yet visited the pumpkin patch with the kids.  The first year that we took them, we were SO excited! We had bags for the camera and bags for the baby supplies and bags for the bags and it was All So Exciting! Last year, we were still excited, but I probably didn't take quite as many pictures, and the enthusiasm waned when Anderson freaked out when we put him on the hay ride and we had to wait in line for 45 minutes to get tickets for the poor, obese, dirty animals petting zoo. This year...well, this year, I was dreading it.  It's so incredibly crowded, kids run around everywhere, there are hay bales to climb and big slides to slide on and keeping a good eye on your kids is next to impossible, unless you want to be one of THOSE moms or dads who literally hovers over their kid to the point of knocking everyone else down, and I'm not up for that.  Equally annoying, the bigger kids never watch where they are going and Amelia inevitably gets knocked down the steps. Yeah, yeah..that sounds like a 90-year-old complaining about the noise next door. I know. I own it. I didn't want to do it.

Saturday was cold and rainy and we were stuck inside all day.  We did the regular stuff--ballet and  Anderson's weekly trip to Hollister, but it wasn't enough to keep the grouchiness away. Bedtime was ROUGH and Marty and I were pretty much exhausted. So, the next morning when the kids got up, fresh-faced, happy, and ready for a new day, I asked Marty if we should just suck it up and do the pumpkin patch. The weather was set to be a little cold but gorgeous, and the kids needed OUT. Now, in my house, we don't tell the kids we are going to do something unless we absolutely plan to follow through because it is just not worth the repercussions. Cancelled plans = temper tantrums beyond your wildest nightmares. Therefore, it was with much reluctance that I told the kids where we were going to go. Anderson's eyes--oh, when I told him, they were AMAZING. Watching him process the information was just intriguing. His first words: "We don't have to ride the tractor." No, buddy--not this year. He then went into detail about what we would see and do--and he missed nothing. He was only three last year when we went--I cannot believe how much he remembered.  We decided to skip naps (!!!!!!!!) and go right after lunch.

Now here is the part where I REALLY own it: it was impossible to watch my kids at the pumpkin patch and have a miserable time. Believe me, I tried. I failed.  Their enthusiasm and glee was unmistakably adorable. I think I smiled for three hours straight. Cute, and smart, and just downright brave. I felt pretty guilty about my bah-humbugness.

Two things stuck out to me, though--two wonderful qualities in my kids that I am always subconsciously aware of but that days like the pumpkin patch bring to the forefront of my mind, where truthfully they need to be more often.  Marty and I took turns following each kid around, as they have different interests and tend to go in opposite directions.  Amelia...oh, sweet girl.  She is the absolute most determined little thing.  One of the amusements at this particular patch is a little figure eight track with old-school pedal tractors.  My kids were late-bloomers in the pedalling game and just learned how to do it this past summer, so I was kind of excited that they'd finally be able to ride these tractors. Well...as fate would have it, Amelia's legs were too short for the tractors.  They have different sizes, and believe me--my girl tried out every single tractor in the place. Every single one.  She finally found one that she could almost reach, and could get enough action to make it go about a foot forward. Then it would roll backward about two feet.  Not one time did that child quit. She tried, and tried, and tried.  The bigger kids (who have no business on the tractors but I digress..) would bump her from time-to-time, and she would turn around indignantly and yell, "HEY! Watch where you're GOING!".  Spunky thing. Finally, I had to drag her away because we were going to go have a drink and a snack. Oh, that perseverance. What a fantastic quality for a kid who is inevitably going to face many challenges in her life. She was seriously inspirational.

Unsurprisingly, she's equally determined when she is scared to do something, but really wants to do it because all the other kids are doing it.  She wanted to go down one of the tunnel slides, but she was scared.  She would sit on the edge, think about it, scoot back down. Repeat. Kids would line up behind her and she would get irritated about having to move out of their way.

Finally, the line got backed up and she wasn't moving, so I did what all fabulous parents do. I pushed her. She loved it.  Pretty sure the dad next to me was horrified, but hey. She conquered that little fear and enjoyed the rest of the afternoon flying off the bottom of that slide. She would've gotten there on her own. She always does. But sometimes, you need a little nudge from your mama.

Anderson--my brave, brave boy. Oh I can't tell you how proud I am of that kid.  Just about six months ago, he wouldn't even DARE sit on a swing. He wouldn't let you hold him upside down. He had the typical equilibrium, center-of-gravity issue that lots of ASD kids have. He hated rough-housing, anything that made him feel off-balance.  However, over the course of the last little bit, he's been working hard to overcome it. He finally let Marty start trying to hold him upside down. Little by little, he got there. He also decided to swing on swings, slide down big slides, climb on structures. So hard for me to watch because I'm terrified that he will fall, but he's just really overcome so much that I try to bite my tongue.  Yesterday, at the pumpkin patch, he climbed to the highest hay bale (to my dismay/awe). He jumped off of the hay (into more hay...soft landing). And my boy went down the biggest slide--and let me tell ya, it is tall, and they go fast! They have little potato sacks to sit on to go faster, and he absolutely loved it. I stayed at the top to ensure that he stood in line as he doesn't always understand the line concept and this particular slide always has a line. His excitement every time he'd run back up there--it was almost tangible.

Like his sister, he worked hard to get to a point where he could not only tolerate these kinds of things, but he actually enjoys them! He enjoys something he was terrified to do only a few short months ago. Something to learn there? Absolutely.

So, friends...I went into the day as Scrooge and came out a big ol' pile of mama mush. I love those kids. I learn so much from them every single day. They truly are role models for me--and probably all adults. I definitely need to be more like them.  Persevere when things are hard, never quit, and if all else fails, just take the leap. It might turn out to be much more fun than expected.

Wednesday, October 16, 2013


Since my "cry-for-help" post, I've really become connected with the dwarfism community. I quickly learned that October is Dwarfism Awareness Month. I had no idea...none at all. And, if I'm being completely honest, it totally caught me off-guard. Because I've never even considered dwarfism awareness.

You see, I've been wrapped up in Autism Awareness.  Anderson and his developmental/social issues have, quite frankly, taken precedence over Amelia's physical issues. Learning how to navigate his need for structure and routine, his social inadequacies, the public's understanding of him, has just engulfed the part of my mind devoted to creating awareness. And then, I joined a Facebook group for parents of children with dwarfism, and I realized that dwarfism awareness is equally important.  Children with dwarfism face both physical and emotional challenges that deserve public attention and support. Anderson's issues may seem more pressing because his issues exist now, but Amelia's are just as significant, and will become even more so in the future.

If we're talking about awareness in terms of awareness days and months, then really I need to support many more. Infertility Awareness, Prematurity Awareness, Breast Cancer Awareness...Cancer Awareness in general...the list goes on and on. Because--and I'm not complaining here or looking for attention but just stating a fact--my life has been deeply, life-changingly affected by all of those things. Equally affected. Affected by those just as much as autism and dwarfism have affected me.

In a dream world, I would equally promote each awareness month. I would fund-raise and post facts on Facebook and the internet and spread awareness at work and preschool and create/wear clothing spreading the message. But in reality, I don't have time for those things. I don't have time, and I don't have the mental strength it would take to dwell on each affecting issue for each of those months.  As bad as it may be to admit this, there are times that I don't like to think about autism.  I don't like to think about cancer, or infertility, or dwarfism. Sometimes, I just like to BE. I like to just be part of a family with two kids. I like to just be a teacher, with two preschoolers and a hardworking husband, who comes home at night, does the routines, and watches a little TV before bed. You know...a regular person.

So, we support awareness a little differently around here.  We support awareness by teaching our children, our families and friends about kindness. About being accepting of differences.  About treating every living thing with dignity and respect. About recognizing that all people are capable of great things, regardless of their size or shape or education or income or color or family situation. We talk about how to show love, how to demonstrate courtesy, and how to navigate life in a society where everyone--EVERYONE--is different.

Because really...if everyone had a strong foundation in all of those things, would we really need awareness months?

Monday, October 14, 2013


Oh, you guys. I am SO overwhelmed with the kindness, the love, the concern you've shown for Amelia and our family. I have a list of people to contact (making a spreadsheet--gotta keep it organized!), and I've made some fantastic connections and gotten great information that I will most definitely use.  Please…keep sharing. I appreciate each and every comment, suggestion, and email more than you even know. Thank you, thank you, thank you!

I think I got a little click-happy and posted/shared without giving enough details about Amelia's story--I was just so excited by the thought of finding some connections that I wasn't thinking clearly. So...to clarify, here is what we know about my girl:

* We were told at 22 weeks gestation that, based on her brain and heart on ultrasound, she likely had Trisomy 18, which is a fatal chromosomal issue. We were told not to expect her to live to birth. Fortunately, our first geneticist was at the hospital on the day that they were born, and told us that she definitely didn’t have Trisomy 18. She was still screened for it, and of course the test came back negative. She was 1 pound, 1 ounce at birth, and was in the NICU for 99 days just learning to eat and to gain enough weight to keep up her body temperature.

* She had a PDA that didn’t close with medication, which caused her to be on oxygen for the first seven months of her life.  She had the hole surgically closed (she was too small for a catheter closure procedure) and came through that procedure fabulously. She continues to be followed by a cardiologist, just to be sure all is well.

* She has Dandy-Walker Variant, which is less severe than Dandy-Walker Malformation. She has enlarged ventricles (can't remember offhand which ones are enlarged; it’s been awhile since we’ve even talked about this with a doctor), and she’s actually missing a part of her brain right at the stem because during her in-utero development, the fluid from the enlarged ventricles collected where her brain should’ve been growing.  Fortunately at this point, her cognitive development doesn’t seem to be impaired. In fact, she’s a pretty bright little girl, and that’s hard for me to say because as an elementary teacher, I have high standards. J She knows all of her letters and sounds, some sight words, colors, numbers through 12, shapes, etc.  We are followed by a neurologist who sees her yearly just to check in and see how she is doing. One of the potential complications of  DWV is hydrocephalus

* She has echogenic kidneys. This means that her very tiny little kidneys don’t work at 100%. She’s followed by a nephrologist who keeps a pretty good eye on things through blood draws, urine samples, and kidney ultrasounds every six months. So far, they’ve not gotten any worse, so we just watch and wait and hope for the best.

* She does NOT, according to three blood samples and two endocrinologists, have a growth hormone issue. Three blood draws at two different hospitals indicate that her levels are very normal. Our endocrinologist followed her for about a year and a half and dismissed us this past summer.

* She does NOT, according to two geneticists, have Russell-Silver Syndrome. I really thought that was our answer; she really looks like a child with RSS and has some of the characteristics. However, both geneticists agree she doesn’t have all of the hallmarks, and that she is in fact too small for that diagnosis. We continue to see a geneticist in Cincinnati.

That’s Amelia’s life, in a nutshell.  She is also a very feisty, spunky girl who loves to learn, loves Minnie Mouse and Doc McStuffins, has an amazing imagination, and makes us smile every single day. She’s our miracle baby, and we just want to pursue a diagnosis. We realize that we may never get any real answers, but I would, quite honestly, feel like a failure as a parent if I didn’t continue to at least try.  We've never spoken to or seen any real experts in the field, so that's where I feel like we need to go next.  Our geneticists have admittedly not seen anyone quite like her, but I just can't shake the feeling that someone else might have. Gotta keep on keeping on.

Thank you, again, for all of the advice, comments, everything. I feel so undeserving of it all—it’s surreal. I’m going back to my regular, snarky, silly blog posts, but I’ll definitely update as I get return emails from all of my requests, so I’d love it if you’d check back in and see how we progress!

Sending all kinds of love through the interwebs to you all.

Sunday, October 13, 2013

I need your help...

Social media is an incredibly powerful thing.  This weekend alone, I've watched prayers and kind thoughts for a former co-worker's grandson spread through our area and even other parts of the country like wildfire, all because of Facebook. It's a wonderful, wonderful way to spread knowledge, ask for help, share love and caring for one another. So, I'm putting it out there. I need help.

Here's how this idea started. I was bored last night and looking through Netflix for something to watch. One of the TV shows caught my eye--it was a TLC special that I'd heard of but never watched.  It's called "The Tiniest Girl in the World", and it chronicles the life of a little girl with severe primordial dwarfism. At the time of the video, she was two years old and weighed in at seven pounds. SEVEN POUNDS.  Amelia is tiny; she's not close to that tiny.  The show was so interesting though, and I learned a lot. The word "primordial" means that the small size showed up before birth--so technically, Amelia DOES have primordial dwarfism. At 32 weeks gestation, she was the size of a 24 weeker.  Interestingly enough, this girl was much bigger than Amelia when she was born--this child was born at 36 weeks and weighed 1 pound, 11 ounces. Amelia was a mere 1 pound, 1 ounce. Amelia now tops the scale at a whopping 20 pounds--she will be five on February 10th.  This particular story took place in England, and it was high stress because they were trying to determine which kind of dwarfism she had--one type meant that she'd only live to be about three years old, and the other meant she could live into her thirties.  Fortunately, they determined she had the latter--the show had a happy ending.  It got me thinking though...thinking about the thought that is always, ALWAYS in the back of my mind.

Amelia is undiagnosed.

She's seen two geneticists--one at UK, one at Cincinnati--and they've run the common tests for all possible diagnoses, all of which have come back negative.  Essentially, they look at her, measure her head circumference, take pictures of her dysmorphic features (clinodactyly, triangle-shaped face, small eyes, wide nose...I could go on and on), and tell me that they still don't know.  Which wouldn't be a big deal, except that I want to be like the mom on the TLC special. I want to KNOW something about her life expectancy. Most days, the not knowing doesn't bother me. But it's always there, a nagging thought in the back of my mind. Will she be around in her teens? Her twenties?  She is healthy enough now, but will the Dandy-Walker be affected when her head grows? Will her echogenic kidneys get worse? Will her small size somehow impact her growing organs? No idea, because nobody knows what's going on with her.

Here's where you come in. I've asked repeatedly at Cinci if there is a specialty clinic somewhere in the country that I can visit, somewhere with someone who might know more about what could be going on.  They always insist that they don't know of any. So....I want you to share this post--share her story. Re-post it to Facebook. Send it to friends, to ANYONE who might know any specialists in the field of dwarfism/small stature. Send it to the news--I don't care! I just want help in finding someone--anyone--who would be willing to take a look at her (more than just her head circumference and body) and try to figure out what is going on with her. We will gladly travel anywhere in the country that has someone who would be willing to see us.

Please...if you think you or any of your Facebook friends could be of help, please consider sharing this post or sending them an email.  If you have ideas and want to send me an email, my address is wrw7728@gmail.com. After watching that show, I really want to pursue this. We appreciate any and all help you can offer.

Some pictures of Amelia from birth until now, for anyone who might want to see her dysmorphic features:

I mean, who wouldn't want to help that little face?

Thanks so much...

Sunday, October 6, 2013

Defining Normal

First of all, for those of you who sent messages inquiring about my procedure, thanks so much for the kind thoughts. I'm all ablated, and hopefully the procedure worked wonderfully and I'll have no more issues. The procedure itself was a breeze; the recovery has been fairly mild. The scarring and adhesions from endometriosis have caused a bit more pain than usual for this procedure, as everything goes back to normal in my abdomen, but all in all very tolerable.

I've been thinking a lot about "normal" lately. Especially in terms of our family unit.  For instance, I thought about it tonight, as I was picking up Amelia's messy messy room, the kids helping me, while Marty threw together dinner in the kitchen. I stepped over a spatula, unused balloons, a tampon wrapper (Amelia LOVES them. Not sure why), dress-up toys, an empty cup, some dried-up shredded cheese.  The kiddie chairs had been dragged over to the front door (for watching the rain?), the kitchen table was covered in art projects and notes home and pictures and a paint stirrer and a mixing bowl. Some of that? Some of it is normal in a house with two kids. Some of it is not-so-normal.

I think my idea of a "normal" family is kind of how I grew up (which is funny because honestly my childhood was anything BUT normal, but to outsiders, it looked pretty damn vanilla).  House was always clean, dinner was a family affair with no television, we followed pretty much the same routine day in and day out.  My dad NEVER cooked--I am certain he wouldn't even know where to start. He did clean some, but most of the cleaning was my mom's job.  She ironed on certain days--even ironed pillow cases.  All in all, it kind of looked like Ward and June Cleaver's household.

My family, by that definition, is not normal.  On any given day, my house can be very neat, or very messy (not dirty...messy. There's a difference.).  By the end of a work week, our kitchen table IS covered in stuff.  Sometimes the floor is, too. The kids' rooms--well, they're always horrific by the end of the week.  You can always find laundry hanging from door frames (no laundry room--have I mentioned I can't wait to move?), drying. Sometimes I cook dinner, sometimes Marty cooks dinner. Sometimes we eat together, sometimes we don't. Sometimes we watch movies at dinner. Sometimes, we play outside until it gets dark. Most days are completely different from the ones before.

One day a few weeks ago, as we were following our bizarre night time routine with the kids, I looked at Marty as we passed and said, "Do you think we are normal? And do you think we are scarring our children because we aren't?"  Looking back, I feel silly even thinking that, but I was really concerned.  His response really stuck with me. He said that no, we might not be "normal", as in like other typical families. But he said that we aren't scarring our children because even though everything isn't always neat and orderly (both physically in our home and emotionally, dealing with special needs and illness and all of the other insanity that life has thrown our way), our children are loved, and supported. They feel comfortable being themselves and they know without a shadow of a doubt that our love is unconditional, that they are safe. That our home is full of happiness.  Stable. And THAT? That's what was missing from my childhood. My childhood was normal on the outside, not on the inside. And if I had my choice? I'd go for normal on the inside any day.

So...maybe we are the normal ones. Maybe normal doesn't exist. We create and define our own normal.