Little Laugher

A Few New Things

There is a certain type of person who thinks they know the best way to raise every child. I do mean every child. Even though they've spent a total of 2 minutes with your child, they still know what's best for them. Even better are the people who like to let you know what you're doing wrong. There's just something so unnerving about these people who have all the answers and love to give unsolicited advice; probably because it comes across in the "let-me-tell-you-what-you-need-to-do" attitude...that you have no idea what you're doing. While I think every parent knows what I'm talking about, it's even more frustrating when there's something different about your child. Whether it's a health problem or a social, behavioral, learning, or developmental difference... I think you encounter moments when another parent, teacher or authority figure looks you in the eye and says something out of total ignorance that just makes you want to scream. Often the assertion sounds something like "If you'd just make him...", "She just needs...", "All you have to do is...". Often, for an 'average' kid, what they're saying might be true. But since they have NO idea what's going on with YOUR child or what you/they have been dealing with, it's ridiculous, ludicrous, hurtful and downright wrong. For the first time, I recently found myself in this situation and I am STILL trying to shake the way it made me feel. It's silly, really, since the person was just clueless and had no idea what they were talking about. But the thought that there might be other, equally unaware, people who think the same thing has me going crazy. Apparently, in this whole parenting world, you have to learn to let other people's, and especially other parent's, opinions bounce off. I'm not there yet. On to the updating.


On Friday, Kiersyn and I went with my Mom to In-n-Out Burger in Frisco. After seeing all the insanity on the news and hearing about the hours-long line, I was expecting big things. We waited probably 30 minutes and I must say I was terribly disappointed. The fries are tasteless and the burger was nothing special. Even though the opened a few weeks ago, the line was still out the door and we overheard people saying they drove 2.5 hours just to eat there. Sorry Californians, I don't get it. Maybe it's just because you don't have Smashburger in CA! Check out the line: Crazy.
Saturday Kiersyn went to book club with me while Danley met with his summer intern. Baby K made her first friend, baby Lila. One week younger than Kiersyn, Lila is a miracle baby and a testimony to the power of prayer. Before she was born, her parents were told her brain wasn't developing properly, she might have Down Syndrome and needed several heart surgeries. Many, many people prayed for months and Lila needed only one surgery and is perfectly healthy! They were so cute together, just staring and smiling at each other! Afterwards, Danley met us in North Dallas to take Lexie to the Dachshund meetup. It didn't turn out quite how we hoped - because of the holiday weekend, it had been cancelled and we didn't know it. There were several other dogs in the small dog park and even though she ran scared a few times, she tolerated a few of them sniffing at her. Hopefully it was a baby step in learning that other dogs and people aren't always scary. Since we were up north we stayed awhile at my parents house and Kiersyn had her first pool experience. She's still a bit too little to be in the sun or really get in (or fit in her swimsuit) but she got to put her feet in! No other new news as far as Kiersyn goes - the holiday weekend is putting a hold on hearing from insurance about her formula and ordering medication. She has been going to sleep just fine in her sling but waking up around 330 or 4am when she had been sleeping 9/10pm to 6 /7am, not sure if she's just getting used to it or if it is uncomfortable.
Still trying to figure it all out...
Please continue to pray for baby K!

Storms, Slings and Socks

Something to ponder...

A random conversation I had this morning, initiated by a stranger.

It went like this:

Lady – OH my. That baby. If that baby lived in my neighborhood and I came over to visit your house, I would call her Cindy Lou.

Me- As in, Cindy Lou Who? The Dr. Seuss character?

Lady – Well sure. You know how she is real smart? Well that baby looks real smart.

I have just one question.

Um. What?

I mean, first of all it doesn’t make any sense. Second of all, what does living in her neighborhood or her visiting my home have to do with ANYTHING else she said?

I really don’t know.

Maybe you have some answers for me.

As for life lately, Tuesday night we had terrible storms, including nearby tornadoes, screaming tornado sirens, pouring rain, lightening, thunder, and crazy hail. We spent a good portion of it hunkered down in the closet. As it turns out, trying to put a baby to sleep in a small, hot closet with extremely loud thunder and hail pounding the house is no easy task. But we survived. I was waiting for rain anyway.

Baby K is doing well on her new formula. Since the most drastic change we have seen began with the formula change, it is likely that she DOES have a cow’s milk allergy responsible for the degree of pain she has experienced with reflux. We have just begun the process of requesting insurance coverage for her formula (it is crazy expensive as far as formula goes) and were warned by Texas Children’s that this can be quite a headache. Thank the Lord I happen to know we live in one of only 8 states that require coverage for Kiersyn’s condition and I am armed with Texas Health Bill 2000 - Subtitle E, Title 8 of the Insurance Code. (Chapter 1377, Subchapter B, Sec 1377.051.) No one is telling ME no!

Despite how ready I am to fight, go ahead and pray it is a quick and easy process if you would.

We also received her “Tucker Sling” today. It is a sleeping sling that keeps her on a wedge elevated to 30 degrees. It has been impossible to keep her elevated in her crib since her arching and turning is so dramatic she slides off of anything elevated and turns herself in circles flailing about. Her erratic movements seem to wake her up just as much as reflux episodes. She has been sleeping in her car seat and we really needed a better solution. Here she is trying it out.

I was worried since she has to be either put down awake or potentially woken up by the Velcro and strapping in... but here is what happened 30 seconds after strapping her in.

Apparently it won’t be a problem!

Tonight will be her first night to sleep in it, here’s to hoping it goes well.

From time to time there will be Lexie updates. She's a part of our family. If you’re not a dog lover, you'll probably want to sign off for these parts.

Lexie likes to steal socks. This morning I caught her reveling in her success. Thought you might like to see how cute she is.

Have a wonderful holiday weekend!

Prayer and Post-Baby Dates

So my wonderful parents, recognizing the amount of stress Kiersyn’s current situation is placing on us, offered to keep K tonight while we went to dinner and a movie. We saw the new Pirates of the Caribbean movie (in IMAX 3D, an experience in and of itself if you’re willing to pay $16 a ticket). We had fun but I was struck by how different “dates” are after having a child. After dinner we had some time to kill and while trying to figure out what to do, I had two thoughts: #1. Wander around the baby dept. at Target and #2. Take a nap in the car. Pre-baby I highly doubt I would have considered either of these options. We did go to Target but it was uneventful besides the woman who yelled at me but that's a story for another time. We headed to the movies and I’m a strong believer that if you’re going to do something, you ought to do it right. That means getting popcorn. This particular theater had those machines where you get to put the butter on yourself. Have you ever considered how ridiculous the concept is? You press a button and instantly have a fountain of butter. Does anyone need a fountain of BUTTER, whose primary make up comes from the FAT found in milk? And have you watched how much people put on it? There’s probably already 4.2 million calories in a large movie theater popcorn and then we make a heart attack readily available to drench it with. Who needs that much butter? Well. I do. In fact I think it’s possible that I enjoy the butter more than the popcorn. If you don’t leave the theater feeling sick, you haven’t enjoyed the full potential of a movie-going experience. But anyway, the movie was good and we came home to a sleeping baby. Amazing! Especially considering she had a rough morning. We had to feed her the old non-prescription formula she is clearly allergic to. The pharmacy lost the prescription for her elemental formula and I spent all day on the phone with Texas Children’s in Houston who informed me her Dr. was not in the office and could not sign a new copy, then her pediatrician, other GI’s in Dallas and anyone who might be able to get us a prescription or have samples of her formula. Yet another hassle and I was so frustrated I was close to losing it. The past few weeks I've had so many moments of anger and frustration - of shaking my fists and demanding change from God. Telling Him why it shouldn't be like this" …as if I know better. I was supposed to have a 100% healthy, happy baby. We’re supposed to be enjoying every moment of the short time she is this little. It shouldn’t be just making it through. I shouldn’t think “If we can just make it past this...” But God heard and He spoke. I realized that in the past two months, during this time of being downright irritated with God, I've had more communication with Him than in a very long time. I might feel like the current situation is unfair but it’s the only one I’ve got. There will always be another busy tomorrow, another stressful day, an eternal list of possibilities and plausibilities. The trouble is not in getting “through this”. It's in being able to see and more fully appreciate the quiet, surprising, rare glimpses of Heaven I do have here. Like little miss Kiersyn Rayne's smile or, for the first time today, her laugh. These are momentary joys that point me toward what we will someday be. In the midst of trial, I have to try to see the hard times not as unfair but as an opportunity to lean into the arms of Christ all day long, for whatever reason. And to have faith that even (if not most of all) on the worst of days - whether it's demons of the past that appear out of nowhere or we are attacked by something new and frightening - God not only demands but deserves a faith that recognizes, respects and adores His light - because Light shines brightest in the darkest of nights.

Baby K Update

As an update for those of you who don't know - I thought I'd give a not at all thorough run down of what's up with Kiersyn.

Kiersyn has GERD (Gastro Esophoageal Reflux Disease). She has the "silent" type which means the acid in her stomach comes back up into her throat causing burning, and damage without always resulting in "spitting up". What that means in a real life sense is that Kiersyn experiences a lot of pain - coughs, chokes and sputters when she refluxes and screams a lot while she's hurting. She also responds to the pain with what is called Sandifer Syndrome - a physical reaction involving dramatic, repetitive neck turning and back arching that can make holding her or changing a diaper nearly impossible. She also has a suspected cow's milk allergy. She has been through several medications and now a prescription elemental (contains no milk or soy proteins) formula. It has been a roller coaster and Kiersyn has had many ups and downs and we are not yet satisfied with her quality of life at this point.

Strangely, there are 3 different ways of thinking in the medical field on how to treat cases like Kiersyn's. The first is that of most doctors and Gastroenterologists - try one of three different drugs and physical ways of avoiding reflux episodes like having her sleep on an incline. If those things don't work, you'll have to wait around til the child outgrows it (though some never do), hoping it doesn't cause so much damage that surgery is needed. These doctors, despite good intentions, are simply uninformed and unaware of the latest medications and research.

The second kind is the doctors who ARE up to date on the latest research. The research, completed by the Midwest Acid Reflux Children's Institute (MARCI) shows the dosages of medication given to infants for GERD are severely inadequate because infants metabolize these specific drugs 3 times faster than adults. In other words, the same dosage given to an adult that lasts 24 hours is out of an infant's body (and therefore no longer effective) in 8 hours. These doctors prescribe medications at an effective dosage and are very hard to come by. Though we know of 3 in Houston, all are booked until August.

The third kind of doctors are those who have heard about the MARCI research but are afraid of the higher doses or are too set in their ways to change what they've been doing for decades.

Unfortunately, we have come in contact with doctors from the first and third camps. However, through the wonder of the internet and forums that connect parents like myself who are at their wits end with this whole process of trying to "educate" doctors and fight for what our kids need, I have been able to get in touch with the doctors at MARCI. Remarkably, aware of the lack of knowledge among many professionals, they have made themselves available to provide whatever help needed including a way to order drug components and compound medications in your own home when you can not find a doctor to prescribe it.

This is where we currently are, fed up with waiting to see a doctor who can help, I'm taking it into my own hands - using the internet, e-mail, and even social media to contact doctors who CAN and WILL help. I am in the process of putting in an order for the new medication for Kiersyn and will soon be turning our kitchen into a pharmaceutical lab.

I'll let you know how it goes.

This is one of the most frustrating and emotionally draining situations I've experienced. Nothing like watching your baby hurt and being powerless to stop it. Especially when she feels good and you see her real personality. She's so full of joy. The good news is that most children outgrow GERD before their first birthday, however, in the worst cases - they never do. Pray that Kiersyn continues to improve, that the new medicine will help, that she will outgrow this awful thing quickly and that the rest of us will find peace in the midst of this chaos.

If you want to know more check out

http://www.marci-kids.com/index.html

What I Didn't Expect

I knew a lot of what to expect about motherhood. I worked in daycare with infants for years. I've seen a lot, dealt with a lot. I read some books - including the "What to Expect" one. I was ready as much as you can be. I never went through that "Ok, what do we do now?" feeling I've heard some people have when they bring home a baby. I knew I would have sleepless nights, crying (hers and my own :), endless diaper changes, etc. But despite my experience, despite my own preparations, there were still things I didn't expect.

I didn't expect that I would be in awe. I didn't know that I would stare at her in wonder and amazement at the beauty of new creation. I didn't know I could sit, holding her asleep for hours, not caring that half my body has fallen asleep. I didn't know her smile would give me strength or her hand wrapped around my finger would bring me to my knees in prayers of thankfulness.

I didn't know I would be afraid. The thought that one day a friend will hurt her feelings, that she will discover that life isn't fair and some people just don't know the meaning of compassion - that if I do my job well, she will struggle and sometimes fail - strikes my heart with terror. Almost as much as the thought that she will someday be 2, 6 or 16 and push me away... whether it be to feed herself or find herself; it scares me that the better I do my job the less she will need me.

I didn't know how many things would cease to matter. I swore up and down I would not be one of those people whose whole life is their kid(s), (i.e. one who makes their profile picture of their kid instead of themselves and every status update is about said child). I promised I wouldn't lose myself like that. I didn't know my old self would be long lost anyway.

I didn't know that I would marvel at my God more than ever in my life because the thought that He willingly gave His son is now beyond comprehension.

I didn't know watching her hurt would hurt me more than any pain I've ever felt, in a place deeper in my soul than I ever knew existed.

I didn't know how much I would come to love and appreciate my husband purely for his role in maintaining my sanity.

I didn't know that I am both far more and far less patient that I previously believed.

I didn't know motherhood would be far worse and far better, bring me more joy and more pain, and move me more deeply than I ever expected.

I didn't know I would love her this much.

I didn't expect that.




BTW.
Other things I didn't see coming:

Noticing spit up on my clothing and still walking out the door...
The "look at, speak to, joke about my child that way one more time and I will seriously knock you out" feeling... Don't test me.
That my child would KNOW which outfits are expensive and purposefully spit up only on them.
That she would, however, NOT know that in the bathtub and/or being carried naked to the tub are not times to go poop.
That the secret to cleaning dried spit up, pee, poop, etc out of your clothes, rug, upholstery (and I assume juice out of the carpet, marker off the wall...) is love. lots and lots of love.

Stay tuned. More to come.