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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Monday, April 28, 2014

An evening out with my darlings

This past Friday night, Donny and Cole went camping with our brother-in-law and nephew so it was just us girls at home. (just the 5 of us. out of 7. ha ha.) I decided to make it a fun and special night for my girls. When I was growing up, there was pretty much one night a year that my dad and brothers went out of town. Being a dairy farmer kind of ties a person down. When they were able to get away, they went to "Fathers' and Sons' Outing" for church and while all of the men were gone, we would get together with some of our friends and have girls' night. I have some really great memories from those parties! We would eat delicious homemade Mexican food (which we did NOT eat at my house because my dad didn't like it) and watch musicals and spend the evening playing with our friends.

Donny picked Cole up early from school on Friday and they packed the car and headed for the hills.
Raya watched something on Netflix while Piper and I took a much needed rest on the couch and we waited for the big girls to get home from school. Through the screen door, I could hear Kaida bawling like her little heart was broken before they even got into the house. I asked her what she was crying about and she said, "I miss Bubba!" Poor little thing. :) I told them all to put on whatever clothes they were going to wear for girls' night so we could get the party started and that cheered her up a little.

I wanted it to be special for each of them so I let them decide on what we did for the evening. Ashtyn really wanted to watch a musical so I gladly agreed to that. They all wanted to have dinner from a restaurant so I let them decide whether we went out or got takeout and gave them a couple places to choose from. Raya really wanted to have a dance party in the living room, and they all wanted to paint their nails.

We all got dressed and they all came in my bathroom to get their hair brushed. I surprised them by offering to let them all wear lipstick to dinner. They all picked matching lipstick and I even put eyeshadow and blush on Ashtyn & Kaida, who by that point had totally forgotten about how sad she was that Cole was gone for the night. We hopped in the car and headed to a little Chinese food place down the road. And of course since it was girls' night, we had to blast the radio and sing along!
Before we left the house, I had tried to get Raya to decide on what food she wanted to bring to eat at the restaurant. She turned me down on everything I offered and said she didn't want anything. Her stomach has been bothering her a lot lately and she hasn't been taking snacks to school so I figured she just wasn't hungry. When we got to the restaurant, she told me she just wanted food from the restaurant, not from home. Oops. There was NOTHING on their menu she could have. She ended up eating some ice, Splenda, and licking a little bit of 2 Dum Dum suckers. She also grabbed and ate a fried wonton chip before I even saw that she had it. Once she'd eaten a bite of it, I figured what the heck, she might as well finish it. She had already gotten into and eaten Ritz crackers the day before. I hate being the bad guy all the time when it comes to policing her food intake. This time, I actually let her choose. I told her that the food she was eating had wheat in it and would make her stomach hurt but that it was her choice if she wanted to eat something that would make her sick or not. 

After dinner, which did not last long thanks to Raya being sad about not getting to order food and Piper waking up and crying, we went to a little grocery store on the corner and picked out some dessert. I chose that store because I knew they had some of the SO Delicious brand ice cream bars that Raya can have. She picked out the vanilla ice cream bars and the other girls and I picked out a chocolate silk pie with an Oreo crust. We blasted the radio again on the way home and then got ready for our dance par-tay.

At first, Raya was not into it. She was really sleepy all of a sudden and didn't want to do anything but lay on the couch.
After she saw Kaida and Ashtyn dancing, she found some energy and joined them. It probably also helped that I unplugged her from her pump.

Here are a few pictures from the dance party:

wow, I have long, skinny, white arms, don't I

Then it was on to the next portion of the evening: pedicures and a musical!
Piper was not a fan.

We had a slumber party in the living room and it was a great evening! Sometimes I feel like 4 girls is a lot of girls (and heaven help me in their teenage years) but I sure do love my girlies!

Friday, April 25, 2014

Another apology to Target

Yesterday was.........special. Yeah, we'll go with that. It started out fairly normal with one exception. Usually Raya is not the first one up and she's not the one that's bouncing off the walls crazy in the morning. Usually Cole is the one that's being shushed all morning long to keep him from waking up whoever is still trying to sleep (i.e. Piper or occasionally Raya) and from antagonizing everybody else. Not that my sweet son would ever antagonize his sisters. Yesterday it was role reversal day or something though, because Raya was giggly, rowdy and noisy all morning while the big kids were getting ready for school. In an effort to get a little bit more sleep after they left, I put on one of the 2 long episodes of Backyardigans for Raya and went back to sleep on the couch with Piper. Donny had a late shift yesterday so he left at 9:30 and I decided to get the girls ready and go to Target to get some things Donny & Cole need for their campout this weekend. That was when the fun began.

I should preface this with a little back information about Raya. She is a smidge stubborn and she thinks she knows everything already. (no idea where she gets that from) I think a good word to describe her would be "four-nager". You know, like teenager only she's 4? Yeah. She likes to argue. Combine that with the fact that she fixates on things and can't let them go and we have a lot of battles. I choose my battles carefully so there are a lot of things that I just overlook because they're not worth the fight, like what she wears. When she came out of her room wearing a floral print shirt and begging me to help her put on her camouflage shorts, I obliged her. Before we could leave, I had to pump so I put Piper in the swing (which she's not a huge fan of) and told Raya she could watch one more show while she waited for me to be ready to go.

Shortly after that, she decided that the living room rug needed to be moved. I didn't want it to be moved. She wanted it 6 inches to the left because it was uneven and it was bothering her, and because she couldn't "jump to it". I had no idea what she meant by that but didn't really care because the rug was right where it needed to be. She got upset and kept telling me over and over that she wanted to move the rug so she could jump to it. Then she just quit talking altogether and switched over to pointing and grunting/yelling instead. That's what she does when she gets upset or flustered. She was also trying to pull the rug out from under my feet but couldn't so that was making her more angry. Of course Piper was in the swing crying because that's what she does most of the day whether I'm holding her or not, so with one in the swing crying and one rolling around on the floor crying, it was fun.

As soon as I was done pumping, I had to get up and walk into the kitchen, at which point she took the opportunity to move the rug 6 inches to the left and then stand on the bottom shelf of the toy shelves and jump to the rug. I've never seen her do that before but from the way she was carrying on about it, you'd have thought it was her favorite hobby that I was preventing her from enjoying.

After that, I told her it was time to go and asked her if she wanted to change her pants into something that matched her shirt. She boldly replied, "No, Mommy, I don't HAVE to wear things that match." Points to Raya for knowing that her outfit didn't match! I told her that was fine and to get her shoes on. I don't remember what set her off that time but she got upset again. I asked her if she wanted to pick out clothes for Piper to wear and she didn't acknowledge my question or stop being upset about whatever she was upset about, so I just got Piper dressed. Then she was upset that I got Piper dressed without letting her pick out clothes and wanted me to take Piper's clothes off so she could pick some out. I told her we didn't have time for that and that if she wanted to pick Piper's clothes, she should have done it when I told her it was time to do it, but that she could pick out a headband for her if she wanted to. She was too busy being mad about the clothes to pick out a headband so I put Piper in the carseat and took her to the car. Raya was storming around the house being upset at that point so I got her shoes out for her and told her it was time to go and that I was getting in the car. I opened the garage door and got in the car and waited. She appeared in the doorway shortly after that clutching a teal colored headband to go with Piper's purple and yellow shirt (because it was no-match day, remember?) and trying to stay mad and not smile. I helped her get her shoes on and she got into the car.

Sometime during the 2.5 mile drive to Target, Raya got happy. The world is a better place when Raya is happy. She was suddenly excited about going to the store and getting new sleeping bags for Daddy and Bubba, and she chattered and sang along to the radio (which is seriously adorable) all the way there. When we got there, I parked next to a cart return, which Raya climbed on while I got Piper out of the car. I put the carseat into the cart (not on top of it because that's not safe...) and Raya got all excited because she got to be a big kid and walk. I had her hold onto the side of the cart while we walked into the store just like I've had the other kids do, and our shopping trip began.

I couldn't help but chuckle a little when I walked into the store with her dressed like this:
Thankfully at 10am on a Thursday, Target is mostly full of moms of young children who are wearing similar outfits so nobody really gives it a second glance. At least not because of what she's wearing, anyway.

I've mentioned before how excited Raya gets when we go to stores and she's in a good mood. She gets so excited that you'd think she was at Disneyland or had been living under a rock her whole life. Just for example, here's a video I took of her at the Disney store once. This was after we had been there for about 20 minutes already and a little bit of the novelty had worn off:

So yeah, she gets a little giddy at stores. Target was no different. She had something to say about everything she saw there, and she never says anything quietly. She was turning heads. She also didn't just walk through the store, she had to bounce, dance, twirl, jump, skip, hop, run, etc. We picked out sleeping bags for Cole & Daddy and put them on the bottom of the cart, and then we needed a few snacks for them so we headed over to that part of the store. This was about the point where she decided that she needed to help me push the cart. First, she wanted to push with the handle of the cart but insisted on standing right in the middle, which made it really hard for me to push the cart. Then she decided it would be more fun to push on the sleeping bags that were on the bottom of the cart so I had the handle back all to myself but couldn't let go or she would have rammed something/someone with the cart. She also rearranged a few items on shelves while I was looking for the things I needed so then we spent several minutes having a standoff about her putting things back where they belonged.

We finally made it to the checkstand and she insisted on helping me put everything on the belt. Then it was our turn and the lady started scanning our items, at which point Raya decided that she needed to hand each item to the lady before the lady could pick them up herself. I'm sure she loved that. Raya picked up a frozen lasagna and held it up for the lady, who was busy scanning something else and didn't take the lasagna from her right away. Raya sighed and said, "Um, hel-LO! I can't hold this here forEVER, you know!" I will admit, I mostly thought it was hilarious and wanted to laugh out loud. I didn't though. I told her that was not a polite way to talk to someone and that she should leave everything alone and the lady would pick things up when she was ready for them. She said, "Okay, Mommy!" and bounced around to the other side of me next to the handle of the cart.

Right after that, I took a step and slipped on something wet that I knew hadn't been there a few seconds earlier. There was a puddle on the floor. When you have a tube-fed child who is connected to a feeding pump and a mysterious puddle appears, suddenly the world around you disappears and your top priority becomes identifying the source of the puddle, preventing more puddles, cleaning up the puddle, and doing damage control. All of this is done with no regard to anyone or anything else around you, which is why the next words out of my mouth were, "Raya, did you puke? What is that puddle on the floor? Is your backpack leaking? Turn around and let me see your backpack. Nope, your backpack is fine. Are you sure you didn't puke? Is there puke in your throat? Ma'am, do you have a paper towel. Thanks. Raya, where did the puddle come from? Did the puddle on the floor that Mommy just stepped in come out of your mouth?" And THAT, my friends, was the winning question. Sometimes I have to rephrase something 20 different ways before she gets what I'm asking her and answers me. According to her, she did not puke, but the puddle on the floor DID come out of her mouth. In other words, my 4 year old spit up on the floor at Target. In the middle of all of the questioning, I was cleaning up the puddle. Instead of answering my questions, Raya was pointing and saying, "Uh, Mommy, you missed some. There's more over there." She is such a helpful child. Sadly, this was not our first incident with making puddles of formula/stomach contents on the floor at Target. Once again, Target, I apologize.

I breathed a sigh of relief when she was safely buckled into her carseat again. Once we got home, I thought maybe she'd be a little worn out from her busy, busy trip to Target and want to lay down and watch a movie for quiet time. Nope. She continued to bounce around the house all afternoon. All. Afternoon. She kept getting mad at me for silly little things too, or getting her feelings hurt over silly things. Each time she would storm out of the room, I'd find her later doing something she shouldn't be doing. At some point, she climbed the shelves in the hall closet and got a couple of games down. I was actually impressed that she did it without falling or dropping anything and kind of wish I had seen how she did it. She got upset with me for telling her to put pants on and I found her a while later hiding in her room eating whole wheat Ritz crackers. (she's allergic to wheat) A few minutes later, she had gotten into the freezer and found a little mini cupcake that I made in November when it was her birthday and before we knew she was sensitive to egg, which is why they never got eaten after that. She also decided it would be fun to take all the clean bottles, measuring spoons, cups, formula scoops, etc. that she could find (and the Vitamix pitcher), fill them all with water from the fridge dispenser, and sit on the floor in the kitchen and pour water back and forth between all of them. I can't remember if that was before or after she pooped in her diaper (after having a STELLAR potty-in-the-toilet day the day before) and told me she did it because she forgot what I said about eating ice cream if she poops in the toilet, and THEN deciding she wanted to poop in the toilet so she could eat ice cream and sitting on the toilet for a good half an hour until she digested enough of something to be able to poop some more. She killed the time by unrolling the entire roll of toilet paper that I had just changed the day before and singing to herself. 

Most of this was happening during the 30-ish minutes that Piper was actually sleeping without being held, during which time I was frantically knocking things off of my to-do list that included things that had to be done while the kids were quiet, like make phone calls.
I knew Raya was suspiciously quiet rather than just quiet but at that point, it didn't really matter as long as she was quiet. After she ate her coconut milk ice cream bar and I cleaned up her water mess (which happened after I spent a good 15 minutes trying to get her to clean it up herself and then ran out of patience when she insisted on pouring the water out of each item into the Vitamix pitcher so that it could all be poured out at once but kept getting sidetracked) I needed a reprieve. Piper had woken up and was crying the whole time I was cleaning up the mess and I was tired and just wanted to lay on the couch and snuggle Piper for a while but didn't dare do that with Raya on the loose. I wanted her to just be still for a few minutes. Heck, I would have taken ONE minute of stillness at that point. I decided that her feeding pump needed to be charged, which limited her movement to within a 15 foot radius of the electrical outlet. I had her get her pillows and blankets and whatever toys she was going to play with and told her she was going to have quiet time in the corner for a little while because I needed to plug her into the wall. (yet another phrase I never thought I'd hear myself say to my child...)

That trick kind of worked but not quite as well as I had hoped. My wishful thinking had me hoping that she'd sit there and fall asleep but she was never still enough for that to happen. She did, however, practice writing "Mommy" on her magna-doodle.
She informed me that the top row says something to the effect of, "Mommy is a grown-up so she can do whatever she wants." Ha. If only that were true. (side note, notice the wardrobe change that happened after she retaliated against me for asking her to put pants back on by eating Ritz crackers, which she is allergic to, and then gave in and put on a skirt)

She continued to be a wild woman the rest of the afternoon. I ended up laying on the couch with Piper and getting her to take a nap, so I did not move a muscle except to turn on another episode of whatever Raya wanted to watch so that I knew where she was and what she was doing. Piper ended up sleeping from about 2:30 until about 5:30, which is awesome except that I could do NOTHING while she was napping. Good thing we bought that frozen lasagna at Target, right? She was happy most of the day except when she got upset with me about one thing or another, but good gravy her energy level is exhausting sometimes! When the big kids got home from school, things just escalated and it was a madhouse the rest of the evening. I shooed them all outside for a while, which I'm sure the neighbors appreciated, and then finally had to cut my losses and put Piper down and cook the frozen lasagna so I could attempt to make it to my 7:00 church meeting on time.

Between getting everybody fed and ready for bed and pumping again (story of my life these days), Piper and I were about 35 minutes late to the meeting. I fed her a bottle right after we sat down and then had to stand up in the back of the room with her because she was threatening to be fussy. Then she filled her diaper. And I mean she FILLED that little thing. It was then that I realized that I had forgotten to restock the diaper bag. Sure enough, I had zero diapers left for Piper. I did, however, have one size 5 diaper stuffed down in the bottom of the diaper bag, so guess what size diaper Piper got to wear for the rest of the evening? I was surprised that I was able to get it stuffed into the little sleeper she was wearing.  After that, I just went home because I was afraid there was a little too much of a gap around her legs and that it wasn't tight enough, and I didn't have any medical tape to fix it up with. (not even kidding, if I'd had a roll, I would have MacGuyver'd the heck out of that diaper)

I topped off my night with a good laugh about how the entire day had gone and ate some chocolate chip cookies. Thank heavens I've been blessed with a sense of humor.

Thursday, April 17, 2014

A glimpse into the mind of a medical mom

A few years ago, I went on a little road trip to the Grand Canyon with my mom, a dear friend, and the 2 kids we had at the time. We left in the early afternoon and drove to the South Rim. In order to get to the hotel where we'd be staying the night, we had to enter the park, drive for a while, and then turn south to exit the park and get to the hotel. By the time we got to the park entrance, it was well past dusk and all we could see was the road in front of us and the trees that were illuminated by the headlights on either side of the road. Although some of the sharp twists & turns in the road made me a little nervous, I felt comfortable driving the road in the dark and was enjoying the ride with my family. We arrived safely at our hotel and settled in for the night.

The next morning, we set out to explore the trails on the South Rim of the Grand Canyon. With a 4 year old and a 2 year old, things were a bit nerve wracking at times as we held onto them for dear life and cautiously peered over the edges of the many scenic overlooks. The views, of course, were incredible and we had a wonderful day.

March 2007

 Late in the afternoon, we packed up the car and started the long drive home. As I navigated along the winding, tree-lined road through the park, I suddenly realized something that I had been blissfully oblivious to during our drive down the same road the night before and it took my breath away. We were driving along the edge of a very, very high cliff. You know, the Grand Canyon. In the pitch black darkness the night before, I could not see what was past the shoulder of the road. In the bright sunlight of the afternoon, I was taken by surprise just how precarious our position had been the night before and we had no idea. In places, there was a safe distance between the road and the canyon but in others, all that separated the road from the cliffs was a couple yards of dirt and a few trees. Sometimes not even that. Even in the broad daylight, I found myself feeling nervous and white-knuckling the steering wheel as I drove along the road that I had so comfortably driven on the night before in sweet oblivion.

A couple hours down the road toward home, I again found myself driving in the darkness. We were hundreds of miles away from the Grand Canyon at that point, but as we approached a curvy, mountainous stretch of highway, I could not stop my mind from picturing how close the road through the Grand Canyon national park had been to the edge of the cliff. In the darkness, I felt like we were teetering on the edge of another cliff each time the light from the car's headlights was lost in the darkness off the sides of the road. Anxiety was my companion until we reached the familiar streets north of the Phoenix valley where I KNEW there were no cliffs!

Over the past couple of months, I've been living through a similar situation. Just like our trip to the Grand Canyon, I did not see this coming at all. While I'd love to be able to say that things have been just peaches and cream with Raya's baby sister, and while many things are drastically different for her than they were for Raya (in a good way), I am being reminded time and again that my life and my mind have been forever changed by my experiences with Raya. To put it simply, there are things in life that you can't un-learn, un-hear, or un-see. Once you have had your eyes opened to the fact that there are dangers lurking in the darkness off the side of the road, you can't forget them. The more you know, the harder it is to remember how unlikely you are to have any of those dangers befall you. Such is the life of a special needs parent.

I knew before Raya was even born that she would not be our last child. We had always planned on having 5 and we had a pretty good idea of when we thought baby #5 should join the family. When life got crazy with Raya's medical issues, I started to wonder if we would be able to have another baby or if that would just be too much to handle. As things started to calm down enough to start talking about it, I realized that being pregnant and having another baby was going to be different and difficult after what Raya's life had been like for me up to that point. I was right.

When you're driving along side the Grand Canyon, once you've seen it in the daylight, you can't forget what it looks like. Similarly, once your eyes have been opened to all of the things that could go wrong in a pregnancy and after the baby is born, you can NEVER forget. You can never go to a prenatal checkup without your heart leaping into your throat at the slightest delay in locating the baby's heartbeat with the doppler. You can never forget hearing stories from friends of the devastating news they got during the 20 week anatomy ultrasound, and you almost forget that you're supposed to be excited for that ultrasound because all you want to know is that everything that's supposed to be there is there and that it's where it's supposed to be. You will also never refer to the 20 week ultrasound as "the gender ultrasound" again because you now understand just how much more there is at stake during that appointment. You panic every time you realize you're still not feeling the baby move like you think you should be. You breathe a sigh of relief when you hit 24 weeks because you baby is now "viable" and with each week that ticks by, you relax a little bit more. Until you get close to the end of the pregnancy and think of your friends who lost their babies to cord accidents in the last 2 weeks of a pregnancy. You can't help but wonder when you're awake half the night with leg cramps and heartburn whether or not your baby will be born healthy but you also know that just because your baby seems healthy at birth, it does not mean that there is not some unknown medical condition lurking in the shadows. Being asked constantly if there's a chance that your baby will have what your other child has does not help, even though you know that nobody means you any harm or distress by asking. It only distresses you because you can't stop asking yourself the same questions. I know this all sounds morbid, but like I said, once you know things, you can't un-know them.

Piper and me just a few minutes after she was born
It continues once the new baby is born. You can't help but examine every detail of your newborn and wonder if things you're noticing are of significance or not. Is that a sacral dimple? Is it high enough to potentially be a problem? Why won't she latch on? Are you SURE her tongue doesn't need to be clipped? Did you hear that funny sound she was making while she drank her bottle? Is she snoring? Why does she cry so much? Reflux again?? Is that shade of blue acceptable or should we be concerned? Is her torticollis bad enough to need physical therapy or can we deal with it on our own? How much longer do we wait to see if dietary changes are enough before we start her on reflux meds? Should we start with an H2 blocker or go straight to a PPI? Are all those loud breathing noises normal or does she have laryngomalacia?

The questions never end. Logical or not, it is nearly impossible to shut off the part of my brain that now knows so much about so many medical conditions that I was blissfully oblivious to when my other babies were born. Back then, those things only happened to other people. Once that wall of naivety comes down, you can't put it back up. Instead of being able to overlook things that I used to not realize were potential signs of trouble, I am now overly sensitive to them. Logically, I can talk myself down and know that things are fine, but there is always in the back of my mind the knowledge that certain things I've observed over the last 2 months are not normal. They may not be harmful, but they are not normal. Before, I could have ignored them but now, they are constant "what-ifs". "Normal" has eluded me when it comes to looking at my children's health and I will probably never get it back.


In most ways, Piper is doing great. Developmentally, she's perfectly on track. She just turned 2 months old on Monday and is at a comfortable 25th percentile for weight. I think she may actually be our biggest 2 month old. She is tracking objects with her eyes, making eye contact, smiling, responding to voices, and is just plain adorable. She has had her share of feeding difficulties and reflux, but so far everything seems manageable without the kinds of interventions we've had to take with Raya. She has torticollis and a touch of congenital plagiocephaly just like Raya and Kaida, but so far they seem manageable too. She has done things that have stressed me out and she has done things that probably SHOULD have stressed me out but didn't.

On Monday, she had her 2 month well-check. It was her 3rd pediatrician appointment since she came home from the hospital at 2 days old. Just like in the first 2 appointments, I came in with a list of concerns to discuss with the pediatrician. I explained to him the symptoms I've been seeing. I've kept pretty quiet about Piper's health on the blog and social media, but that doesn't mean I haven't had concerns. For starters, she has reflux. Hers is worse than Ashtyn's and Kaida's but not as bad as Raya's. Close, but not quite. She is not projectile vomiting like Raya. Thanks to the fact that she is still unable to nurse due to poor suck-swallow-breathe coordination, she is getting plenty of milk and undoubtedly keeping more of it down than she would be if she was nursing, so she is growing at a good rate. She doesn't swallow correctly. Her swallow is not dangerous, meaning she's not aspirating (or at least she hasn't gotten sick yet so we don't believe she's aspirating), but she has had a hoarse voice for over a month and for a good portion of the day and night, her breathing sounds "wet" due to liquid pooling in her throat either from drinking her bottle or from refluxing and not swallowing it all back down right away. Aside from the wet breathing, she is also a loud breather and makes other noises that are not due to liquid pooling in her throat. Sometimes those sounds leave her gasping for air and cause her to reflexively throw her arms out as newborn babies often do. Other times, she has reflux episodes that cause her brain to reflexively protect her airway by closing off her larynx to prevent aspiration of stomach contents, which in turn causes her to momentarily stop breathing until she's able to clear the liquid from above her airway. Sometimes when that happens, her oxygen levels drop briefly and sometimes her lips start to turn blue.

As I discussed all of these things and a few others with the pediatrician, he assured me that everything I was describing fit the bill for reflux. It's all "within normal limits" and is par for the course with reflux. I knew that. I felt stupid. It's hard to really explain why, but I felt stupid. Probably because the logical part of me KNEW that the answer was reflux even though I still can't shake the "what-ifs". This poor doctor probably thinks I'm a total hypochondriac and heaven help us if Piper ever DOES have anything wrong with her because he may have a hard time believing the mom who cried wolf. For the first time in as long as I can remember, I had to fight back tears as I left the appointment because I felt like something in my brain has broken and will probably never be fixed. Having a child with chronic medical issues DOES change you, even on the most basic levels. I often find myself wondering if I will ever be able to live without feeling like I'm waiting for the other shoe to drop.

I know this paints a pretty gloomy picture but I promise, I'm not depressed and I really do love my life. This is just one of the struggles of having a medically complex child that is not talked about much, probably because it's so difficult to explain. As with any struggle though, there are beautiful blessings to be experienced, much like driving alongside the Grand Canyon on a bright, sunny day. I have learned to appreciate things now that I would never have noticed before, like the simple pleasure of a 4 year old child getting the rare opportunity to lick the beaters after we found enough safe ingredients and a recipe to make allergen-free cookies and frosting for her to try.
Sometimes you find yourself caught off guard by a simple little moment that takes your breath away, like walking back into the kitchen and finding said 4 year old crouching on the floor with a mixing bowl, devouring what was left of the frosting. You can't get upset because you know the struggles that are represented as you watch her willingly get her hands and face messy as she hurriedly scoops in the frosting with her bare hands. And EATS it. With her mouth. Without gagging or vomiting or having an allergic reaction. You're so happy for her that you don't even care if she gets it all over the floor and ruins her white shirt with chocolate frosting.
The road may be full of nerve-wracking twists and turns alongside a vast canyon, but the view is truly beautiful. ♥

Wednesday, April 16, 2014

Tender moments with Great-Grandpa

Monday night was a very special night for Donny's family. His grandpa turned 102 years old and the family got together to celebrate. He lives in a really wonderful home where the owners always do a great job of celebrating the important events in their residents' lives. We love any excuse to get together with Donny's extended family!

Piper on her 2 month birthday meeting Great Grandpa on his 102nd birthday

Our family with Grandpa (and Grandma's picture on the wall)

4 generations

Digging in to his lemon meringue birthday pie!

Piper and her second cousin were born in the same hospital 12 hours apart :) There were SO many little babies there and several more that weren't able to make it to the party!

Snuggling with Grandpa

Donny's middle name is Ray after his grandpa, and that's where Raya's name came from

The party was winding down and everybody was starting to leave. The people that were left started cleaning up the tables & chairs and a few of us were still standing around talking. I looked around the room to find Raya, who had been ridiculously full of energy the whole time we were there, and saw her bouncing across the room towards her great-grandpa. She was off in her own little world and was singing to herself when she suddenly stopped singing and popped up on the couch next to Great-Grandpa's chair. She must have thought he looked bored because she seemed to decide that he needed to be entertained. Once he noticed her sitting there staring at him with her chin propped up on her elbows, he started playing with her. I couldn't hear what they were saying and they probably didn't catch most of what the other person was saying, but they were happy and the exchange was adorable. He got her nose:

They arm wrestled:

She sang "Let it Go" from the Disney movie Frozen:

And then they both sang to each other at the same time:
She saw the pictures today and I asked her what song Great-Grandpa was singing to her. She said she was singing Let it Go and he was singing the Happy Birthday song. Too cute! I don't know that she'll remember it years down the road but I'm so glad I noticed and got a few pictures.

A few pictures from the last week

Things have been really busy the last week. I say that a lot, don't I. Really though, I felt like I didn't have 5 minutes to sit down and breathe last week. It was a good week though.

I made my first full grocery shopping trip with my new little buddy:

 The big kids helped out with the little one so I could get things done here and there. (like use the bathroom and wolf down a snack every now and then)

Raya's respite provider got food poisoning and canceled on a day that I really needed the help, so my very sweet friend Dana came over to snuggle Piper and entertain Raya so I could get things done.

Piper FINALLY decided that she can handle a few minutes in the swing every now and then, which is a HUGE help since she almost always cries unless she's being held, and she doesn't usually sleep unless she's being held.

She is also giving us some big, beautiful smiles once in a while now:

I finally filed our taxes. Whew. I submitted them on the 10th, which is officially the LATEST I've ever done them. Never waiting that long again!

On Friday, I'd had enough of the really disgusting poopy diapers I'd been changing (I'll spare the details but something is not right with that kid's digestion this week and we're talking near blowouts) and told Raya that if she went poop in the toilet instead of her diaper, I would buy her coconut milk ice cream. I left to run an errand and about 20 minutes later, I got a text from Donny that said, "Raya pooped in the toilet and she said she wants coconut ice cream" I stopped at the store on the way home and bought her 2 boxes of coconut milk fudgesicles that don't have any of her allergens in them. We made a really big deal about how great she did going poop in the toilet and she could not have been more excited to have her first ever ice cream bar!
They were pretty tasty! The best part (for me) is that they don't drip when they melt so aside from getting on whatever she touched with it, it was hardly messy at all.

Our weekend was really busy but also wonderful. I spent the whole day Saturday trying to get the house cleaned & ready for company on Sunday. We had Piper's baby blessing at church on Sunday and it was a great day. I have more to say about it but it will have to be in another blog post. After church, everyone came over for lunch and the kids had a great time playing with cousins and friends. Here are a few pictures from the day.
The star of the show but not happy about it!

"Mommy, take my picture!"

Our family :)

All of our family that was able to be there. (and yeah, that was the nicest shot of Raya out of the dozen that were taken)

Raya being silly with her cousin :)

It was a great day but between all the activities of the week and the excitement of Sunday, I was pretty worn out. I gave myself permission to shirk all of my normal Monday morning activities and just lay on the couch and snuggle my baby.
I'm really not a fan of selfies but if I don't take pictures of myself, there won't be any because nobody else ever takes any. :)

(this was just before she freaked out about laying on the paper)
Monday was Piper's 2 month birthday and I took her in for her 2 month well check that afternoon. Her well checks are a very different experience than what I'm used to. Her appointments are hard for me in a different way than Raya's have been but that's another subject for another day too. Suffice it to say that it is very hard to go back to normal mom mode once you've been in medical mom mode for 4 years. I'm still not used to hearing the doctor say that her growth rate looks great and she's at a healthy weight but it's nice to hear. At 2 months, Kaida weighed 8 lbs 2 ounces and Raya weighed 8 lbs 8 oz. Piper blew them both out of the water and weighed in at 10 lbs 10 oz. It sounds enormous compared to them but it's still just barely above the 25th percentile. I don't care, I'm good with that. There are still concerns about her feeding difficulties (mostly MY concerns, the ped isn't worried but he's also not the one feeding her) but she's growing so that's the important thing. I haven't said much about it but her reflux is getting pretty bad. It's worse than Ashtyn & Kaida's and almost as bad as Raya's but minus the projectile vomiting (knock on wood). Raya started her projectile vomiting around this age so hopefully Piper won't follow suit. Honestly, nobody worries about a baby with reflux or feeding difficulties unless they fall off the weight chart so I'm grateful that I've learned everything I've learned about reflux over the course of 3 other refluxy babies because I know enough to deal with it now rather than just take a doctor's word for it that as long as she's growing, we don't need to do anything. It's amazing how many people have that opinion.

She did great with her shots. I breathe a huge sigh of relief once the 2 month shots are on board. Babies die from those diseases and I am so thankful that I'm able to have the choice to vaccinate mine. 'Nuff said. She was a trooper. She cried harder from having to lay on the cold, crinkly paper on the exam table than she did from her shots. I was a little unsure of how she'd do with swallowing the oral vaccine because of some swallowing issues she has but she handled that one really well too. I'm glad the appointment is over with but probably not for the reasons people might expect, which I'll explain in another post on another day...
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