It all started with a $20 deal...

You know those email offers that you sign up for only to delete later? It was one of those things. Roo hasn't had a nice picture taken in awhile and I received an offer of 43 prints + 5 postcards & a free wall hanging of your favorite pose for $19.99 from Portrait Innovations in my inbox. I hadn't heard anything bad about them, and I figured that they couldn't be any worse than our Picture Me (Walmart) or Olan Mills (small studio in Meijers) experiences, so why not? Have I mentioned how horrible almost all of Roo's school pictures have been?? Which is understandable.. because school pictures are taken in the gym.. and, in her mind, the gym is not made for standing in lines, looking nice, and smiling for a picture, then leaving.. The gym is for running around, getting the wiggles out, downward dog, and gym class! Sometimes the gym is for movies, plays and musical instruments... but those are all a toss up. You never know how she's going to do during a convocation. Anyway, that is my personal, logical explanation for why she can't take a good school picture when she loves school so much. It has to be violating her "rules."

We get to the studio a few minutes late, carting in 2 backpacks and purse stuffed extra full of things to keep her happy if things started going south. The hubby is just holding Roo's hand, leading her inside. (I swear, "pack mull" should be added to the job description of a mother! :-) ) I quietly informed the photographer of her autism diagnosis, explained that I understood that there was a minimum amount of pictures she had to take, told her that we would do our best, but when Roo was done, she was done. She seemed very understanding. Anyway! Long story short, she did amazing. Incredible. She made it through 90 photo shots, and an outfit change without a single tear, then sat in a chair with her iPad for another half hour while her dad and I went through them. She shocked us all! These are some of my favorites!

~*Never Give Up!*~

The Best Advice I Wish I'd Taken

Um.. So this could be a touchy subject.. I'm not sure this is the right place to discuss "arguments", "heated discussions", or "fights" between couples.. SO, allow me to introduce you to the fly on the wall,  hypothetical Jane and hypothetical John. Their names have been changed to protect their privacy, and about a third of this post will be completely untrue and.. it will be up to you to figure it all out, but the main point will be obvious. That make sense?

The couple that Mr. Fly will be telling you about have been married about 10 years. Jane has brown hair, violet eyes, and a nose ring. :c) John has brown hair, chocolate brown eyes, and big muscles. The have one child. A little girl with fiery red hair, brown eyes, & a smile that lights up a room. This is his account of one afternoon's happenings:

One day John came home from a hard day's work (he lays railroad), and was upset that once again the house was not clean. He was greeted at the door by the cat. John is not particularly fond of cats, but he will pet this one when he thinks no one is looking. He finds his wife in the next room, on her kindle, and the little redhead on the couch with her tablet. She was laying on her back, feet in the air, holding it up, while she used one or both hands to play her game. The child, not the lady (because the lady hasn't been that limber or flexible since.. ever). This is the child's favorite way to hold her Ipad. The only downside is that sometimes her big toes get tired and it slips, usually falling on her face.

John goes to the bathroom, and the little wife follows to say "Hello" and "How was your day" only to get a gruff reply. He just didn't understand how the house was still dirty. "It's been dirty over a month," he says. He went on to say that he saw their child on the Ipad, perfectly content, and why couldn't you wash dishes while she's on it?? The answer is really simple. The little redhead doesn't miss a thing, and she doesn't want to play on her tablet alone. She has these "rules" of how things are supposed to go, and at this point, her mother would do almost anything to keep her from whining and crying. This has been a long, mostly unhappy summer. The wife tells him this and reminds him how often their little girl needs to eat, and how someone must be with her, and that that takes time. He insists that they should make the cat do more around the house, because, after all, all he does is sleep, eat, and use his litter box--it wouldn't hurt him to watch a little girl eat so she could clean. "That's ridiculous!" protests the wife. "How would he give her the Heimlich if she became choked?" He sputters for a moment says, "What about Dr. {Very Nice Development Pediatrician That We Haven't Seen In Years}!?!" (Now referred to as Dr. VNDP)  "Huh?" Jane says. "What about Dr. VNDP?!" John repeats. Jane snaps, "Dr. VNDP lives in {another state}! We haven't seen her in years!"  "But what did she say?!"  "She said that I should go on a getaway with the girls for a few days! Take off for a week so that you would understand what I go through!" "What?" He looked purely shocked, by the way. "She said that you wouldn't understand unless you had to do it on your own for a few days, and I laughed, and told her that it wouldn't happen." At this point, Jane picks up the toilet plunger and beats John over the head with it. "I wish I'd done it!" she said, "because you just don't get it!"

This is where I'll stop. After living in this household for years (have I told you of my stealthiness?), I have to agree with the wife. This summer she's been kicked in the jaw over a phone call that wasn't going the child's way, endured hours of endless whining that kept away any chance of company, not to mention the meltdowns when she took her outside, because this summer has been unusually nice, bearable and even sometimes cool. This is, obviously, not what summer is supposed to feel like. The child simply doesn't allow her to clean, and even though she's just mentally exhausted by the time the redhead's bedtime rolls around, she still deserves time to relax. This has been the little girl's worst summer as far as acting out. There's still time, maybe the wifey should plan a weekend get away? I heard her tell John last night to plan on taking a week off next summer, because she was going on vacation with a couple friends. You go girl!

If you're the primary caregiver and your spouse, partner, or sperm donor doesn't "get it," let them carry the load for awhile. It will be good for everyone involved.

Why Dye When You Can "-Ing"?

I'm going to be honest, I have a love/hate relationship with the Easter holiday (and most holidays, if I was being really honest). First off, what I love... I'm a Christian and I cherish the idea of celebrating Christ's ultimate sacrifice and resurrection because He loved us that much!  Before Roo & when I was younger, this time of year made me feel closer to God. Now... well, things aren't like I expected them to be. That's just the truth. I thought that when I had children I was going to relive childhood memories with them, and pass on traditions. Instead, I'm usually trying to find some little tidbit that I can tack on that will survive the sensory overload and extra excitement while still bringing on the smiles. I seriously try to keep the sparkly, sugary special needs take on life.. The whole "make new traditions" thing, but sometimes it's SO hard. And progress... can't forget progress.. sometimes it shows itself in the most unexpected ways.

For instance, this was a couple of years ago... she helped.

And last year, we managed to keep her in the room ... for the most part.

And this year...

This year she effectively communicated that she did not want to color Easter eggs. I mean, seriously, every time I asked her, "No!" But she did agree to color Easter pictures with us, and we did it as a family. It was the runner up prize I guess.

It was okay.

She was happy, & that's what matters.

The Friday before Easter, she went with me to a doctor's appointment because her daddy had to work late and I didn't have anyone to watch her on such short notice. It wasn't a big deal, but sometimes it's just a tad annoying not to be able to talk freely. Afterwards, I thought I would get lucky and she would be preoccupied enough with the Ipad that I could get an Easter outfit while we waited for my scripts to be filled. So we  stopped at a dress shop.

I was not that lucky.

I forgot about the mirrors. *sheesh!*

The twenty thousand mirrors all  along the walls...

So I did what I had to do.

While she was going from mirror to mirror--smudging, licking, & smiling at herself--I flew through the store and grabbed whatever caught my eye ... grabbed the first shoes that made  me pause, and grabbed a dressing room. It was stressful. It was quick. I got A LOT of looks varying from pity to snooty... Buuuuttt..  It was a success! :-D

The Easter Bunny came as scheduled and Roo was happy with her goodies. Have I mentioned that the Easter Bunny doesn't bring sweets to her? Nope, he's so awesome that he brings small toys and knick-knacks, because they make her smile more than candy. ;)

My husband and I attend different churches right now. I'm okay with that, mostly. I miss having him with me during service, but we're each doing what's best for ourselves at the moment. A wise lady recently said that the grass may be greener on the other side, but that could be because it's on a septic tank! You've gotta admit, she has a point. haha

Roo usually goes to church with me, and she has become such a big girl, staying in the pew. She loves Sunday School!

She doesn't like special services though. They confuse her, I think. On a normal Sunday, we have a few songs, a small scripture reading & then everyone is dismissed to classes according to their age. She hears a Bible story in class and does activities & a coloring page with the other kids. Afterwards, they come back to the adults in the sanctuary, an offering is taken up and birthdays and anniversaries are recognized. After that, and this is her favorite part, Roo, either by herself or with some other kids, goes up front and sings a song. Then each class comes up and tells what they learned that day. It's really cute, & like I said, she loves it.  During this past Easter Sunday, she waited until the gift baskets were through being given away, and started marching up to the front. In her mind, this was NOT how Sunday School was supposed to go. I ran up to her and grabbed her hand to take her back to our seat and she starts to come along, but puts on the brakes right when we're almost there. Most people don't realize that she can "talk." It's not always intelligible, but she does try and Terry & I can usually figure out what she's trying to say. She talks the most when she's angry..

"-ing!" she said.

"No," I said.

"-ing!" she said.

"Nooo," I said.

"-ing!" she said.

"No!" I said.

Then suddenly, we were addressed from the platform, and she was told that it was okay, she could come and sing. And she did. She sang her heart out. While she ran up there, my pastor gave a short explanation about how she has autism, and routine is important to her because there were many visitors. It was sweet. I know there are churches that go about inclusion all wrong, and that some people are still ignorant enough to think our special children are punishments from God, and even some idiots will try to "cast the demons" out of our children; but there are some churches that do it right, that know our children enough to know that they are blessings, & love them enough to help them through the rough spots. If your a Christian who's given up because you've come across some churches that don't understand, keep trying! Use Google! Ask around! Don't give up!

Anyway, however you celebrated Easter, I hope you enjoyed it! :-)

Why does Roo have a feeding tube?

Today was pretty uneventful. Anything exciting that happened was posted on my Facebook page. Terry wasn't able to go to work today, & we are dealing with extreme cold temperatures.  It's  still unclear whether he will work tomorrow or not, but school was cancelled earlier today.

I still feel like blogging though, so here's a little (yeah right!) back story, our history, experience ..whatever you want to call it.. with feeding tubes.

Roo's Tubie

One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor  until the next day.

The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes.  At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until it was almost the end.

That's how Roo's birth story began, but it's a long one, so I'll fast forward 8 hours later to a spinal tap, and  an emergency c-section. Trust me, I will go into more details about this later. It deserves it's own post, really. When Roo was born, she had dangerously low blood sugar and a 2 vesseled umbilical cord. In case you didn't know, there are supposed to be three blood vessels in an umbilical cord, and while it doesn't seem to make a difference in some children, in others, it causes them not to get the nutrients they need while in the womb. By chance, one of the nurses spotted a small split in the back of the roof of her mouth. This automatically won my sweet baby a ride by ambulance to Riley Hospital For Children and a bed in their NICU (Neonatal Intensive Care Unit) for further testing.

Terry holding Roo while in the NICU

For some reason, my spinal tap wasn't wearing off as quickly as they expected. In hindsight, I think this was a gift from God. There was so much chaos outside of my quiet room. A group of ...it feels mean to say inexperienced, so lets just less experienced and . .... Okay, I don't have a lot of nice things to say about this particular group of the nurses, so what's it matter anyway? A few weeks before, a new hospital opened and almost all of the experienced OB nurses switched to that hospital. The ones that I had in the OR were excellent, and another older lady--the one who actually spotted the cleft palate--they were great. The first hours of Roo's life were spent being poked over and over again by nurses who didn't know how to start an IV in a newborn. A friend told me later that someone had told them that the team from Riley would start one when they got there, but still they kept on trying. Even now, thinking about it ticks me off. So it's good that I didn't see that, but if it wasn't for this older nurse, I wouldn't even have held her at all before they took her to the children's hospital. I'm so grateful for this woman. To this day, we've never taken her back to this particular hospital.

Sweet Pic with NG Tube

From day one, Roo had a feeding tube of some sort. In the first few hours it was a small plastic tube that went through her mouth and down into her belly, that allowed her to be given fluids to raise her blood sugar. The next time I saw her, nearly 4 days later, the plastic tube had been moved to her nasal passage, where it went down the back of her throat, through the esophagus, and directly into her belly (same as the oral one, but through the nose). This precaution was taken because she hadn't had the proper testing to determine if she aspirated fluids when she sucked on a bottle. This is normal protocol for babies born with a cleft palate. We had sessions with feeding specialists during our NICU stay to help Roo be ready for the test when the time came. Unfortunately, she still didn't pass the test, called a swallow study, and we were eventually sent home still feeding her through the tube that went through her nose. This type of feeding tube is called an NG tube. It's usually a temporary fix.

Roo and Mamaw.. The white tube
coming out under her shirt
attaches to a feeding pump.

Roo's next hospital stay was the one that taught us the words "biliary atresia" (a form of pediatric liver disease), and "Kasai" (a possible life saving surgery for infants with biliary atresia), and ..so many other words.. During Roo's Kasai surgery, she had a feeding tube placed that went directly through the abdomen and into her stomach. It seemed like a good idea. And it was. Still, we looked forward to the day we could give our baby a bottle like a typical baby, but that day didn't come. We left the hospital seven weeks later with a central line that she received TPN through (it's like IV food), and a feeding pump that hooked up to her feeding tube and pumped small amounts of formula into her belly 24 hours a day. She had a really hard time with acid reflux at that time & this was supposed to help her keep foods down. Nobody really explained how things were supposed to be, but she was still gaining weight despite all the vomiting.

When she was 4 months old, the doctors decided that she was ready & she had her central line taken out. A few days later, Dec. 26, 2006, she was admitted back into Riley for RSV, which we always assumed she got during her visit to have the central line removed. It was during this stay that she was switched to a different reflux medication, Prevacid, & I'm not exaggerating one bit that it was a life changing moment. Before, she would reflux so often, and not know how to spit it out, and we would have to use huge suction bulbs to get it out so she wouldn't choke. And you're probably thinking that common sense would have told us to say something, but we were discharged way. We thought that this was just how things were going to be for her.

Pudding High :-)

At around 8 or 9 months old, she passed her swallow study. And after the many different bottles, including some pretty fancy ones that the hospital gave us, the little booger still wouldn't take a bottle. In fact, her suction was so poor that she wasn't able to use a pacifier without holding it to her mouth.. Which she did, cutely. :)

The fact that she has such a poor diet now astounds me because we worked so hard with her. We had to teach her everything. We would put a little bit of baby food in her mouth and she would look at us all wide eyed like "What am I supposed to do with this?!" and eventually it would slide out. Then we started dabbing just the teeniest bit of baby food on her green soothie pacifier and she would hold it to her mouth and yum-yum-yum it off. Gradually we were able to increase the amount on the pacifier and a few months later, she would take a bite of baby food off a spoon and stick the paci in her mouth on her own to help her swallow. That was the only way she knew how to swallow it.

Smile you know you want to!

At some point we started to give her those little Gerber cereal snacks--the ones that basically melt as soon as they touch your mouth--and she learned to chew. Then her Occupational Therapist suggested Cheetos. Everything changed after that. Gone were the days of baby food. It was pudding, suckers, go-gurt, chicken & stars soup, spaghettios, vegetable soup... canned corn, peas, and carrots... Then, as she became older, she would chew on pizza crust, eat tiny pieces of cut up pizza, and bologna, and cheese and.. the list goes on. We were so excited! Our church was praying, everyone, all of our friends and family, were hoping that she could get rid of the feeding tube. It seemed everyone was excited with us. I began giving her her medications by mouth, and she didn't mind most of them. The Zyrtec never went well, and I don't blame her. Ever tasted that stuff??

She would only drink out of
this kind of cup for the
longest time.

For six months she took everything by mouth and didn't use the feeding tube. For six months a child that was once diagnosed as "failure to thrive," grew and gained weight, and supported herself. We were right on the verge of calling doctors and letting them know that the time had arrived and she was ready to have her tube taken out. Then she got sick. Cholangitis (an infection in the bile ducts) put us in the hospital again. That was what usually put us in there. And she stopped eating. She just quit. Even after we came home, and she was better, we would start to gain momentum, she would go back in the hospital, and stop eating all over again. I don't know exactly when it happened, but gradually she quit eating most foods.

Cheerios and fries,
meal of champions! ;)

Today, at 7 years old, she will willingly eat animal crackers, pretzel sticks (or twists--never both at the same time), sometimes goldfish crackers, McDonald's french fries, cheerios and Kroger cheesy puffcorn. Rarely she'll eat carrot sticks, and will only drink milk. That's it. She gets pediasure through her feeding tube while at school or on the go, because she refuses to eat anywhere but home or my parent's house. She doesn't take any of her medications by mouth anymore.

Oh my gosh, she touched it! ha ha

Honestly, at first it was heartbreaking when we realized how far she had regressed. Devastating even. Not only were we disappointed, but we also knew that other people were too. Church folks, the ones who prayed so hard for her, would get confused looks on their face and say, "I thought she was over that," when they saw us giving her a bolus (fancy word for feeding her through the feeding tube). And it hurt. A lot. Now.. Now it's just annoying. Now she's a big girl with her own ideas of what sorts of food should be eaten. Sometimes she won't even eat her normal stuff because she's so repulsed by what's on our plates (think "onions"). Now we don't beat ourselves up over things we can't control.. like foods that she won't eat.

So, why does Roo have a feeding tube? Because she needs one.;)

Let it snow, Let it snow, Let it snow.......

Until Tuesday. Tuesday has to be nice so the little redhead can go back to school. :))  Last night it snowed about 5 inches, and we're expecting quite a bit more on Sunday with some daggum cold temperatures.  One of my nephews decided to stay the night with us at my mom and dad's last night. It was kind of a last minute decision, and I wasn't sure how it was going to go. Roo is used to such strict bedtime schedule, that she's rarely up past 8, and I think he thought they were going to stay up late chasing each other & watching movies. I was so afraid he was going to be disappointed.

I really had to watch how I worded things with Roo, and head off any innocent errors that could have led to a meltdown. We didn't "go to bed," we "snuggled and read books" because "going to bed" is something that's done at home. It's a process that could in no way be something done at grandma's house, and Thank God the "snuggling and reading books" thing worked. And even though the tank running on empty is what put us out there, it was pretty awesome in the long run. After all the kiddos were finally in bed, I chatted with my momma for a long time and enjoyed the adult company. When we got up the next morning, Roo kept on spontaneously hugging me. Out of no where. Like, "Thanks, Mom, this is so much fun!" and that was really great, too. The kids played and had fun most of the morning and the roads were clear enough by 1 pm to take him home and run some errands.

My first thought when we ran out of propane on the first day of the new year was "Oh great, this is a awesome indicator of how this year is going to go," but later I realized that maybe it was more of a indicator of how good things are becoming and that, yes, there will be bumps along the way, but everything is going to be okay. Think about it.. We had space heaters, we had some place to go and a vehicle to get us there, and we were able to afford much more gas this time around and still have money left for food and other things afterwords. We are truly, so very, very blessed. <3