Send Your Rain

Could you please pray for our family?

Misfortunate has just been unrelenting for a very long time now. We surpassed "one thing after another" a long time ago and I am so worn out.

There are random small things this week - the dog has an allergic reaction, a random food poisoning episode... and then the rest of the summer...

We have had just about every major appliance break. The fridge, the washer, lawn mower, and computer have all given out in the past couple of months. Along with expensive car repairs.

Danley has had random severe back pain that comes and goes and recently, strange heart burn.

I continue to fight a sinus infection that has been through 3 rounds of antibiotics and will. not. give up. The Dr. recommends surgery to correct my deviated septum which I can not even think about right now.

My mom is still struggling with immense amounts of back and leg pain that are preventing her from walking, getting around or basically living life. She is mostly confined to bed and continues to undergo unpleasant procedures and take large quantities of painkillers just to make it through the day.

And then there's Kiersyn.

Kiersyn is 6 months old now. Still spends the vast majority of her time crying, unless she is on one specific medication - Carafate - which is not safe to keep her on long-term. She can not have solid foods without absolute shrieking, screaming and tearing at her stomach all night and spending the next day crying all day. Her reflux seems worse not better and as her Doctor told us at the last appointment "This is a long, hard road." It may get better, it may not. It may go away, it may not. She may be medicated long into her childhood and the hope there is at least she will be able to explain when she is hurting.

Tomorrow morning Kiersyn has an endoscopy to look at the inside of her esophagus, stomach and small intestine - they will also take biopsies of the lining of the esophagus and stomach to check for infection, GI disease and syndromes, see how much damage reflux has caused so far etc.

I am avoiding thinking about exactly what is happening tomorrow but I know it will be very difficult to send my child off with a doctor to be put under.

The hardest part about Kiersyn has been trying to explain to people what we're dealing with. Other reflux moms, who know exactly what it is like and understand the "reflux roller coaster" of good days/weeks vs. bad, terrible days have suggested sharing a diary of a bad day with friends and family to help them know what it is like since most people see her only at her best. I did that today until right before Danley came home from work. This is not a fun read, but if you want to know what a typical day with reflux looks like, here it is:

6:17am

Kiersyn awakens screaming. She is thrashing. It’s time for her Prevacid. I stay with her and rub her belly, though it does nothing to comfort her. We can not take her out of bed. Picking her up makes her angrier. Danley brings her pill and gives it to her with some water. In a few minutes she settles and falls back asleep. We go back to bed.

7:25am

Kiersyn is awake again. She is stirring and whining but not screaming. Danley gives her a bottle and brings her to me - it is time for him to get ready for work. Sometimes she will sleep a little longer in bed with me, but not today, she is tossing and turning. I take her to her room and change her diaper. It takes several minutes because she is arching and trying to turn her body to the left in an attempt to straighten her esophagus and clear her throat of acid.

8:15am

Since she seems relatively ok, I put her on the floor to play. Within ten minutes she is fussy and then crying. She pushes her face into the ground and screams, throwing her legs against the ground repeatedly. She is not interested in toys, being rocked or bounced.

8:30am

I take her outside to the swing. This is the only thing that calms her when she is having a minor episode. As soon as we begin to swing she begins to calm down. Despite the fact that it is already over 90 degrees and we are both dripping with sweat, she allows me to swing for nearly an hour. During this time her eyes drift open and close several times and when they open, she grimaces.

9:22am

Kiersyn has been completely calm for about 10 minutes so I decide to try and get a shower in. We go inside and I put her in her exersaucer and I jump in the shower. She is quietly playing for about 4 minutes when she lets out a piercing scream. I am out of the shower in 30 seconds, and grab her from the exersaucer where she is throwing her head back and forth and flailing.

9:30am

I try bouncing, back to the swing outside, swaying with her, talking, walking… she will not be comforted. So we sit in the rocking chair and she screams and cries, arches, throws herself back and forth and writhes in pain. Every once in a while she chokes and swallows her reflux. This continues for over an hour. When she is this physical, I struggle to hold her and keep her from hurting one of us – she weighs 20 lbs and is very strong. She grabs and claws at anything within reach. She takes her pacifier for about ten seconds and her eyes roll back in her head in absolute exhaustion. But just as she begins to relax her face contorts, her eyes well up and she shrieks again. This happens 5 more times. I rub her belly, pat her back, sing to her and rock her while she struggles.

10:32am

She suddenly falls very still and takes her pacifier. I lay her down in the crib and she begins to stir – tossing and arching. I press both arms against her chest and stomach. For some reason this pressure helps and she settles. She is asleep.

10:58am

She awakes screaming. I bounce her and swing her until she calms.

11:10am

I sit her on the floor to play. She immediately rolls onto her face and screams into the floor. I get out some books and read to her, she moans, whines and slaps her legs and the book as we read. At least she is distracted enough not to scream.

11:30am

It is time for a bottle – she takes 3 oz and refuses the rest. She has had only 12 oz in 19 hours. Her Dr. says this is because she is smart – she knows drinking more will cause her to reflux.

11:45am – 12:45pm

Danley is home for lunch and turns the TV on. She is distracted by the TV enough to let us eat and take turns keeping her happy.

12:50pm

Danley goes back to work and 5 minutes later Kiersyn refluxes audibly, chokes, gulps for air, swallows repeatedly and bursts into tears. She arches and cries while I try to calm her.

1:20pm

I strap Kiersyn into her harness, still screaming, and Velcro her down in her crib. She is still struggling, tossing, turning, arching and screaming but she is clearly exhausted and her eyes roll back as she tries to sleep but is kept awake by the pain. I put pressure on her chest and offer her pacifier until she finally falls limp and sleeps.

2:30pm

Kiersyn wakes up screaming and arching, I go in and give her the pacifier – she arches a few more times, falls limp and drifts back to sleep for 30 minutes more.

6 months of this is too much. 6 months more might make me lose my mind. It seems so unfair for such a little girl. It seems like enough is enough. Could you pray that prayer for us?

Kiersyn is scheduled for 10:15 in the morning.

Pray for rain.

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