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Monday, August 11, 2014

The Power of Prayer

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

                    ~Philipians 4:6-7

        I have always believed in the power of prayer. Do I have a full understanding of it? Absolutely not! I don't understand why it appears God answers some prayers and not others. What I do know is that he does listen and respond. I also believe we as Christians have a responsibility to share with others when prayers are answered. If you're unfamiliar with the situation regarding our son's health, read the post below entitled, "But He Looks So Healthy." 

        I wrote that post out of sheer desperation to find a specific diagnosis and treatment plan for Shawn. Last week, we received a letter stating the insurance company had denied coverage of the only treatment plan his doctors feel might keep him healthy. Without insurance, it would cost us about $2000 per month, which is more than our mortgage! We have been trying to connect with parents in a similar situation as us (possibly facing a diagnosis of Primary Immune Deficiency), and I had been thinking about using a public blog for that very purpose. Then the denial letter came and I was at a whole new level of desperation. We had been told to expect the appeals process to take several months, and we were unsure how we were going to pay for his treatments in the meantime. I had even called the insurance company and tried to talk to the poor representative "mother to mother," which ended up making her cry (still not apologizing for that). I was told to just start getting everything together in preparation for the appeal. 

        That blog post about our situation was viewed over 900 times from Saturday morning through this evening. People we don't even know sent us messages stating that they didn't know how to help, but that they would pray. Our family has been added to countless prayer lists over the last couple of days. It's impossible not to feel the love. As if that is not enough, I received a call from our patient advocate this afternoon saying the insurance authorization came through. She has no idea how as they have not yet submitted paperwork for the appeal. I called the insurance company to confirm that this was not a mistake, and she had no explanation other than, "your advocate must have pulled some strings." I do not believe in coincidence, but I do believe in the power of prayer. Thank you to those who continue to pray for our sweet boy. He has surgery and an airway biopsy on Thursday, and we will hopefully have a specific diagnosis soon! In the meantime, at least we will have medical insurance to help pay for his infusions. In the next few weeks, we will take him off of the antibiotics to see if the treatments are helping. 

     



Saturday, August 9, 2014

But He Looks So Healthy...

Last summer, I thought I would start blogging, like many moms do. I thought the subjects would be what I'm cooking (I'm a pretty decent cook, I think) and how I manage my busy life as a working mom of a 2 - one who plays travel baseball and a preschooler, both rowdy boys. However, I think it may become my way of updating family and friends on a challenge our family is facing, and also reach out to others who are facing a similar challenge. It may also become a little outlet (therapy) for me. I'm a true believer that we all need a little therapy in our lives.

If you are a family member or close friend who knows all about our situation, scroll down to the bottom. If not, please start reading here, and think about whether you may know someone in a similar situation or have a connection in the medical community who might be able to help us.

This is my 8-year-old son, Shawn.....

He is a typical boy who LOVES baseball. When I say he loves it, I mean he eats, sleeps, breathes baseball. He never really played with toys as a small child because he played baseball outside and inside all the time. I have very few pretty little breakables sitting around my house. When he's not playing baseball with an actual ball and glove, he's playing MLB 20whatever on Playstation or XBox. He's really fast too, often flying around the bases to score in-the-park homeruns more than once in a game. I don't say that to brag (ok, maybe a little), but to present a true picture of his physical abilities.
Those who don't know his situation and history would never believe he struggles daily with health issues. I say "issues" because we don't have a specific diagnosis. At this point, he is being treated for an unspecified Primary Immune Deficiency. Our doctors are not even sure that is correct so we have an appointment scheduled in a few weeks at the Infectious Disease Clinic at Vanderbilt Children's Hospital. I need to take a second to say that we have the BEST doctors - from his pediatrians (all 3 of them working together on his case) to his immunologist to his pulmonologist. If I ever sound frustrated, it's with the situation, not the doctors. I do believe they are doing everything they can for him.
What began as "typical" childhood asthma has morphed into something so much more complex and scary than I could have ever imagined. He has spent the past year and a half on and off of strong antibotics (Augmentin and Omnicef) and both oral and inhaled steroids. He has actually been taking Augmentin daily now since May. He used to be able to go a few weeks without an antibiotic before getting sick, but this last time, it was 4 days. Getting sick for him means true bacterial pneumonia - sudden onset of high fever (105 degrees - no, that is not an exaggeration). These past couple of times, the pneumonia was so impacted in an area of his lung that he wasn't moving air much air through that area so he wasn't even coughing. How do you have pneumonia with NO COUGHING???? The worst part is that we let him play a double header that day, and ended up in the ER that night because we didn't know he was sick. He had just completed a long stint of Augmentin, so why would we think he would get sick so fast? Of course that truth doesn't hold the "mother's guilt" at bay.
In June, his pulmonologist discovered he has bronchiectasis in both lungs. What is bronchiectasis? Basically, it's permanent damage to the airways that causes them to widen and become flabby and scarred. This is caused by too many lung infections. Of course, I went home and googled it and became completely freaked out. His damage is minor at this point, so we have to work hard to keep it from getting worse. How do we do that? Prevent further infections - of which we still don't know the root cause. Which is the reason he is on Augmentin indefinitely. He also began twice-daily airway clearance treatments often prescribed to patients with Cystic Fibrosis. Scary, I know. As a mother, you never want to hear that your child has permanent damage to any part of his body, let alone a vital organ.
FRIENDS AND FAMILY, start reading here...
This is where we are today:
This week, Shawn completed his second Subcutaneous Immunoglobulin Therapy Treatment (SCIG, or as I refer to it - his Ig treatments). Immunoglobulin refers to the fraction of blood plasma that contains antibodies - which our bodies produce to fight off infection. Most people with Primary Immune Deficiencies don't produce enough antibodies, a fact which shows up on blood tests. Shawn's bloodwork shows that his body does produce enough antibodies. His immunologist thinks they are not working - sort of like having a "dumb army." Once he has had several treatments, we are going to take him off of Augmentin for awhile and see if he gets sick.
 Ig Treatments - Ig is prepared from the blood plasma donations of thousands of generous people (THANK YOU!). We basically insert 2 short needles into his fatty tissue (ex - thighs or stomach). The serum is then slowly pumped into his body over the course of an hour. The Ig given only provides temporary protection, so these treatments must be administered weekly.
This sounds like a lot for an 8-year-old to handle, but I'm so proud to say that Shawn handles it like a champ. His attitude has amazed me! However, I'm having to work on mine as the insurance company has denied coverage of these treatments. I'm hold a Master's degree, and am currently working on my Ed.S., and I find myself completely baffled by this whole process. What I thought was approval for  coverage was actually approval for us to receive donated treatements for 4 weeks. Our denial letter arrived this week. Denial based upon the bloodwork not showing insufficient levels of antibodies, and then they stated - "no evidence of subsequent infections requiring prolonged use of antibiotics." REALLY????
Of course, I immediately called the insurance company and demanded to speak to the person(s) who made this decision. This poor lady on the other end of the call told me that wasn't possible, so unfortunately, she had to listen to my story and outrage, and I think I made her cry. Do I apologize for that? Absolutely not. I think I forgot to mention that these treatments cost about $2000 each month, and if they work, he will do them indefinitely. We are beginning a long appeals process, and mark my words. I will get a meeting with somebody. If they are going to deny coverage for the ONLY appropriate treatment the doctors can think of at this point, they are going to have to explain their reasoning in person. In the meantime, we know we have medicine donated for next month, but will have to pay for the medical supplies (tubing, needles, etc..). Those aren't cheap, but they are drastically less than $2000.
Here's what we are asking of our family and friends:
1. Please pray for a specific diagnosis and treatment plan, mercy from the insurance company, and wisdom for his doctors. Shawn will also have sinus surgery and an airway biopsy on Thursday (8/14).
2. Pass this along to anyone you know who might be in a similar situation - It's difficult to explain, but having a child who appears so healthy, but is going through so much is hard. Sometimes I think people think we exaggerate and are overprotective - I probably would too if I was "on the outside looking in." It would be so comforting to speak with parents who are in a similar situation.
3. Pass this along to anyone you know who may be able to help us navigate this insurance appeals process. We do have a patient advocate and a nurse who are helping, and they are great.
4. Pray for me - I am not used to being in a situation in which I have no answers and cannot fix. I guess I'm admitting to having control issues. My husband will be proud. Shawn's health is on my mind constantly. It's hard to find balance among all of the other important blessings in my life: my husband, our fiesty 3-year-old, my career as a literacy coach, and grad school.
Resources for families who need more information about PID:


Saturday, July 12, 2014

Slow Cooker Chicken Taco Meat

This is a crazy busy weekend as we host a car wash fundraiser, and get ready to travel out of town for a baseball tournament. Thanks to our slow cooker, we will come home to chicken tacos for dinner. It makes more than enough, so the leftovers will come in handy as we are packing for our trip over the next two days. This is my go-to meal when I'm in a hurry, and I usually have all of the ingredients on hand.

Slow Cooker Chicken Tacos
4-6 chicken breasts, frozen or thawed
1/4 cup salsa
1 package taco seasoning
1 can Rotel

Place the chicken in the slow cooker. In a small bowl, stir remaining ingredients together. Pour over chicken. Cook on low 6-7 hours if thawed, 8-9 hours if frozen. Shred chicken with a fork, stirring well to distribute spices and juices. Cook on low 30 minutes. Serve with your favorite toppings.

We use leftover shredded chicken for nachos, salads, and wraps.

Friday, July 11, 2014

Morning Devotionals

"In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation."
        ~Psalm 5:3

It is July, and I am pleased to say that I am still on track with my most important New Year's resolution - daily quiet time with The Lord. My goal was to begin my day with 10-15 minutes of reading from a daily devotional. Well, that has quickly been stretched into a much longer period of time. I try to always take notes and write down my prayers. It is so powerful to be able to look back through my prayers and see what God has done in my life in response to them. This daily quiet time has also drastically helped my attitude toward what lies ahead each day. It gets my mind ready to face whatever comes my way. There are several resources from which I read. Whenever possible, I get an electronic version of my devotionals so that they are always with me. Here are the ones I am currently reading:

Jesus Calling, by Sarah Young - I am actually reading this for the second year in a row. I downloaded the Kindle version so it's always with me on my iPhone or iPad. 

Your Best Life Begins Each Morning, by Joel Osteen - I downloaded the Kindle version of this one as well. 

"Daily Hope" (Rick Warren) - is an app I downloaded to my iPad. I've been reading his daily devotionals for about 3 years, and they do not repeat! 

I find something that speaks to me from at least one of these everyday. Sometimes, the words seem to leap off of the screen, as if they were written just for me and what I'm going through at the time. The quiet house, my daily devo, and a cup of hot coffee create such a peaceful way to begin my day. 


Tuesday, July 8, 2014

BBQ Spare Ribs

I've always been intimidated by grilling, especially ribs. Growing up, my dad did all of the grilling, so I guess I just saw it as a "man's job," which sounds incredibly sexist...which I am not. I pride myself on not sticking to gender-specific roles in my marriage. For example, I cut the grass, and hubby cleans the toilets. I kid you not, he cleans the toilets!!

Anyway, back to the grill - Last night, I made the best dinner - BBQ ribs, mashed potatoes, and grilled vegetables. Even my picky 7-year-old enjoyed it.



BBQ Spare Ribs
4 lbs of spare ribs, cut into servings
Grill Mates Mesquite Seasoning
1 bottle of your favorite BBQ Sauce (I use Sweet Baby Ray's Hickory & Brown Sugar BBQ Sauce)

Preheat oven to 350 degrees. Generously season each serving of ribs in Grill Mates Mesquite Seasoning. Double wrap each with heavy duty aluminum foil, and place all of them on a baking sheet. Bake in oven for 1 1/2 hours. Heat grill to about 250 degrees. Remove ribs from foil, and baste each side with BBQ sauce. Place each piece directly onto the grill and cook for 15 minutes on each side, basting once after turning.

Mashed Potatoes
8 potatoes, peeled and quartered
milk (about 1/2 cup, more or less to create desired consistency)
1/4 cup butter
salt
pepper

Boil potatoes in water over high heat for about 20 minutes, or until easily smashed with a fork. Mix with butter until small lumps form. Add milk, and mix to desired consistency. Add salt and pepper to taste, and mix until smooth.

Disclaimer: I know that sounds a bit sketchy, but mashed potatoes really need to be cooked and mixed to the desire of the person eating them.

Grilled Vegetables
1 small red onion, cut into large chunks
1 zucchini squash, cut into half-moon-shaped pieces
1 yellow squash, cut into half-moon-shaped pieces
8 oz. whole white mushrooms, left whole
about 1/2 Italian Dressing (I use Hidden Valley Zesty Italian)
6 skewers

Wash and cut vegetables, and place in a large bowl. Pour dressing over vegetables, and shake to coat. Place vegetables on skewers (have your preschooler help you do this, and teach him about patterns). Place skewers on grill, and cook for about 20 minutes, turning once halfway through.






Wednesday, July 2, 2014

Best App to Keep Me on Track

I wear many different "hats" - Wife, Mother, Literacy Coach, Student, Teacher, Baseball Team Mom. There is so much to do that sometimes it gets overwhelming...ok, it's overwhelming A LOT of the time! During the school year, I leave my house at 6:15 in the morning, and often don't return until after 8:00 at night, thanks to after-school meetings and baseball practice. The Oldest plays travel baseball which means there is practice at least twice each week all year. We do have a few weeks off at Christmas and in August. 

Disclaimer: Please keep your opinions about overdoing it in the baseball department to yourself because he eats, breathes, sleeps, LIVES for baseball. Even on the hottest, stickiest, most uncomfortable days, he begs to practice. If the day ever comes when he wants to quit, we will let him...no questions asked.  

I digress - For a long time, I used the "sticky note" method to jot down my to-do lists. There were sticky notes on my desk at work, counters at home, and even on the steering wheel in my car! As one would suspect...I lost many of those little notes, and continued to forget important things. This past May, all of that changed when I discovered the Pocket Lists app. For $4.99, this little gem keeps me on track. It is a list of lists!!! I downloaded it to my iPhone and my iPad. It's the best $4.99 I've spent in awhile! As you can see, I have a lot to do, and there are only 29 days of summer break left for me!