Tuesday, November 16, 2010

What a Day

Today my mom and I took Joshua down to Scottish Rite for the genetic testing related to his hearing loss. We got up at dark o'clock to make it down there in time for the appointment, which we scheduled over six months ago (they threaten you with bodily harm if you are late). So, of course, as we were getting in the car (in the rain), I spilled my coffee all over my mom's car (and my pants). Perfect.

So, several towels and one pants change later, we were on our way. Finally made it to the right location. Made it back to the actual exam room (Joshua protested the "girl's" gown he had to put on). The genetic counselor came in and went over all of the information in Joshua's file, threw out the names of several very scary-sounding diseases, disorders, and syndromes, and proceeded to tell us that it appears Joshua has none of them. She recommended that we test for genetic disorders related to hearing loss (I thought that was why we came in the first place), but then told us that the screening only tests for 6 possible gene mutations / deletions while there are over 100 genes that could possibly be linked to hearing loss. So, even though we're getting this test, we won't be able to conclusively say that the hearing loss is not genetic if it comes back clear. Say what?

Then she recommends an EKG. Tells us that she wants to make sure Joshua doesn't have a condition (can't remember what it's called or if she was even speaking English at that point) that can cause fainting or sudden death. Oh great. Like I don't have enough to worry about, now I get to worry that something is wrong with his heart because he doesn't hear so good out of one ear.

Did I mention that she was talking ninety to nothin' and throwing in every $20 word known to the medical community? I fancy myself a pretty intelligent person, and I only caught every third word.

So after all of this, we go over to the actual hospital lab to have blood drawn. We also had to do a urinalysis (the look on Joshua's face when I told him he had to pee in a little cup was priceless.) My kid had three vials of blood sucked out of his little arm and only said "ow" once. Then he proceeded to tell the nurse all about his Legos and how he's going to be a doctor when he grows up. Meanwhile, I'm in the corner with my head between my knees trying not to throw up.

Very important information you need to remember before you seriously question my parenting skills: Grandma was with us. (And thank God for Grandma).

With the blood drawn and the pee delivered, we left the hospital. Joshua woke up with a croupy cough this morning, so I made a 2:45 appointment with our pediatrician, thinking we'd be back in plenty of time. I should have known better. It was 1:15 when we left the hospital, and it takes an hour to drive back to the pediatrician's office. We stopped to have lunch and literally inhaled our food in 30 minutes so as not to be late to our appointment. We weren't late. But we had to wait over an hour to actually see the doctor. Figures.

Prescription from the pediatrician in hand, I pulled into my driveway to drop off Grandma and Joshua and to pick up the prescription insurance card before heading to the pharmacy. It was at this point that Dr. Schechter's office called to tell me that Caleb is still growing pseudamonas in his lungs (for the third month in a row) and we will need to do a year of TOBI treatments beginning December 1st. Right.

So, this has not been the best day ever. However, it has also not been the worst day ever. As is my habit these days, I have been thinking about all of the things that I am grateful for in this mess that is my life:

1. Grandma. Seriously would not make it without this woman.
2. Emory's CF Center. The place we went today is also (ironically) the CF Clinic for Scottish Rite. Suffice it to say that I am THRILLED that we don't have to take Caleb there once a month.
3. We already know what to do with the TOBI. It will just be a lot more of the same thing.
4. There is actually a treatment available to deal with the pseudamonas.
5. Darrell's awesome insurance.
6. Darrell's awesome job that often allows him to be off during the week.
7. God. His peace that passes understanding. When I ask for His help, it arrives. I can handle what I never thought I'd be able to handle. He provides for our every need.
8. Joshua and Caleb are both benefiting from the marvel that is modern medicine. And for the most part, the people we have encountered through this journey have been wonderful.

So what's next? Joshua sees the ENT for his routine hearing check on December 1st. We have the EKG on December 10th. Caleb sees the CF specialist again on December 14th.

And I will be on my knees every day praying for their health and healing. What else is a mother to do?

Thursday, November 11, 2010

The CF Journey Continues...

Today was Caleb's monthly check-up at the CF Center. My parents thankfully agreed to take him because both Darrell and I had to work. Hearing about their experience today (the first time either of them has been to the CF Center), I was taken back to those first few weeks of dealing with the CF diagnosis.

On February 15th, at a little after 1:00pm, my phone rang. I shifted three-week-old Caleb into the crook of one arm and answered, "Hello?" The voice on the line said in a very matter-of-fact tone that Caleb's newborn metabolic screening came back positive for cystic fibrosis and we needed to get in touch with Emory's Cystic Fibrosis Clinic in Atlanta as soon as possible. "What?" I asked in disbelief. She repeated her news, gave me the number, and again encouraged me to call as soon as we hung up the phone.

As the line went dead, I stood frozen in the quiet house for a moment, trying to make sense of this news. I was struck dumb, completely ignorant of the meaning behind her words, but feeling an intuitive dread at what lay ahead. Befuddled, I walked to my laptop and googled cystic fibrosis with my free hand. Disease. Genetic. Life expectancy. Fatal. No cure. I sat down abruptly. My ears started ringing, my stomach rolled, my grip on Caleb tightened. I found myself in the eye of a storm and I was instantly drowning.

I called my mom (who had Joshua with her) and barely got the words out. Over the next hour, as I waited for her to arrive, I found I couldn't put Caleb down. I couldn't sit down. I cradled my precious boy as I walked and cried and prayed and cried some more. Time stood still. It was as if everything in me fractured apart in that moment. Everything was different and I had no idea how to move forward. Later that night, as I had to share the news with Darrell, I couldn't shake the feeling that I was living in a nightmare. I kept wishing I would wake up and life would be back to Normal. Safe. Predictable.

By the end of that week, we had confirmation that, indeed, Caleb has two mutations for cystic fibrosis. However, we also learned that one of his mutations complicates the expression of cystic fibrosis symptoms. His case will most likely be a mild to moderate one, and further testing was necessary to determine whether he would actually have a diagnosis of cystic fibrosis or a related metabolic syndrome. In a very short amount of time, we tried to become experts on cystic fibrosis, reading everything we could find on the topic and asking endless questions at our clinic appointments. We had blood drawn for the in-depth genetic screening and had to wait nearly a month for the results.

In March we had a sweat test that confirmed elevated levels of sweat chloride, but did not give a conclusive diagnosis of CF (the "cut off" is 60 and Caleb's were 49 and 55). Caleb also had his first bout with Pseudomonas, a bacteria that exists everywhere in our environment, but is particularly problematic for people with cystic fibrosis. We began 30 days of breathing treatments (inhaled antibiotic) to eradicate the bacteria.

In April, we got the results of the additional genetic testing. It revealed that Caleb produces only 5% of the normal amount of CFTR (the chemical that allows for proper functioning of mucous membranes in our bodies). Because of this, Caleb was given an official diagnosis of pancreatic-sufficient cystic fibrosis. We were hoping for a higher rate of production for Caleb, but we expected this news due to the results of the sweat test. Our doctor told us there is no way to know for sure what Caleb's CF journey will look like. Some patients with his mutations spend a lot of time in the hospital while others show few symptoms through childhood. It is very much a "wait and see" situation (those of us who like to control everything don't do well with that). Caleb's digestive system will most likely not be affected, so he will not have to take enzymes to absorb nutrients from his food (what a blessing!).

By May we had eradicated the Pseudomonas. That was huge - the inhaled antibiotic they use to get rid of the bacteria has only be available to the wider CF population for the past 5 years or so. In June, we got our "vest" to help us with daily percussion treatments. Caleb likes the way the vest shakes his voice and "talks" through many of his treatments. We do two 15-minute treatments a day to help shake loose any mucous that might be forming in his lungs.

Since May we have had two more rounds of inhaled antibiotic (called TOBI) to get rid of Pseudomonas. Today's throat culture will hopefully reveal that the most recent round of TOBI successfully eradicated the Pseudomonas. If not, the doctor said that we will go on an every-other-month-for-a-year regimen to try to get rid of it completely. I'm just thankful there's a treatment available.

Caleb is doing remarkably well as he continues to grow and develop. It is such a joy to watch him discover the world around him. I am also amazed at how "normal" life can be, even in the face of all that we are worried about and dealing with. I am grateful for the healing that God has brought to my "mother's" heart, the heart that broke the day I learned my precious baby has this horrible disease. Every time Caleb smiles at me it is as if God is saying, "Be still. Know that I am God. And I am with you always."

There are still moments when I can't catch my breath. Moments when I am so sad, I don't think I'll ever be happy again. I have moments of intense anger ("why, God?") and moments of complete denial ("this cannot possibly be happening"). But these moments are coming more infrequently than they once did.

Replacing them are moments of deep, abiding joy. Moments when I know that Caleb is a deliberate gift from God, just as he is, and he will bless our lives in more ways than we can fathom. We have an opportunity to grow in our faith in God as we struggle to understand His purpose in our lives. It's amazing how, in the midst of this adversity, a few truths have become clear.

I know that God loves me. I know that He is always with me and will give me strength to face whatever the future holds. I know that He has a plan for my life, for Caleb's life, for the lives of all my precious family. This difficult season of life has been the vehicle through which God has brought us into a closer relationship with Him. Although we are walking through a valley, we have nothing to fear. The Lord, our God, is our strength. His provision is sufficient for the day.

I lift up my eyes to the hills-
where does my help come from?
My help comes from the Lord,
the maker of heaven and earth. (Psalm 121:1 & 2)

Sunday, November 7, 2010

It's the Little Things

In March of '09, Darrell and I went car shopping. I had driven my VW Jetta for nearly 9 years at that point, and it was no longer as reliable as it once was. Plus, we had spent something like $5,000 in the previous 6 months fixing various problems (and dealing with the crappiest service department known to man, but I digress...).

I wanted to get something relatively cheap (initial cost and upkeep), utilitarian, and reliable. Like a Honda Element. Darrell wanted to pretend that we are related to the Rockefellers. He convinced me to go to the Acura dealership "just to look." I should have known better.

Side note: Darrell has an Acura RSX that has required very little servicing over the past 8 years. He has close to 150,000 miles on it, and other than routine maintenance (which Darrell is meticulous about), it has spent very little time in "the shop." I give him a hard time about his car. First, it has rigid suspension, which Darrell is very excited about, but which makes the ride in his car something akin to the Great American Scream machine (wooden roller coaster) at Six Flags. You feel every bump in the road and when you arrive at your destination, your butt is completely numb. Second, the car has two doors, which makes it nearly impossible to get into and out of. The heavy doors are forever closing on my leg before I'm ready to actually close the door. Third, the only people I ever see driving RSX's are women. Seriously.

So here we are at the Acura dealership where Darrell is on a first-name basis with just about every sales guy and service tech in the place. He visits regularly (even when he's not having an oil change, etc) because he loves to looking at and talking about cars. Especially Acuras.

He talked me into test-driving the Acura TSX. I must admit, it was an incredibly smooth ride. And, because they had like a bazillion of these things sitting on the lot, we were able to get a great deal. They had exactly the color combo I like (black w/ tan interior). I really wanted cloth seats (I don't like the feel or smell of leather seats), but apparently that is an offensive request at the Acura dealership (they looked at me like I was asking them to dance naked down I-85). Darrell really REALLY wanted to buy the car, and the sales guy could smell it on him. I countered with rational information like, "the taxes will be about 4 times as much as on my Jetta, we will have to spend twice as much on gas, we will have to spread our payments out over the next 7 years to keep them low enough for us to afford," etc. Darrell developed selective hearing and an impressive talent for circular reasoning. So, because it was getting late and I was tired, I relented and we bought the TSX. I figured we'd be able to pay the car off faster once Joshua went to kindergarten (and freed up the daycare money).

And then, of course, we got pregnant in May.

The smell of my car made me so sick during my first trimester (the summer months) that I was forced to drive the RSX so I wouldn't continually gag while driving. You remember, the car that randomly closes on my legs while I'm trying to get in? The car that makes my butt go numb, even when I'm only driving to the grocery store? No, that wasn't annoying at all.

If complaining were an olympic sport, I would have been a gold medalist last summer.

Once colder weather arrived (and my gag reflex calmed down), I was once again able to drive my new car. And then I found the seat warmer button.

I can't find words to accurately describe the pure, simple joy that is having a warm butt on a very cold morning. I began to grudgingly admit (albeit only to myself) that the TSX might have been a good purchase after all.

And then there's the plug for my iPod. I didn't fully appreciate this little invention until it was time to change over to seasonal music. No longer did I have piles of Christmas CDs cluttering the door and passenger seat of my car. All of my music was readily available at the touch of a button. And the sound was crystal clear, not all crackly like it is when you have to use a tuner to listen to your iPod in the car. Plus, I still had easy access to non-seasonal music when I was momentarily tired of listening to "Have Yourself a Merry Little Christmas."

I have been officially converted. I love my car. I will be happy to drive it for the next several years. It is reliable and very comfortable. Darrell was right, but please don't tell him I said that.

Thursday, November 4, 2010

Joshua's Feather

Joshua's preschool teacher sent home a big paper feather for Joshua to decorate with things he is thankful for (to add to the big paper turkey, I assume). For those of you who know Joshua, you can guess how this "exercise" went. I finally got him to list out things he's thankful for and this is what I got: "the birds that fly in the air, the house that we live in, my family, my baby brother Caleb, and that's all."

"That's all?" I asked.

(mumbled under his breath) "and Legos and the computer. (nervous laugh) Just kidding, Mommy."

"It's ok to be grateful for your Legos and the computer, Joshua."

To which my sweet son, in all sincerity, dropped his precious head and prayed, "Dear God, thank you for my Legos."

Tuesday, November 2, 2010

Autumn Has Finally Arrived

Autumn is my favorite season of the year for many reasons. First, I love the cooler weather. Crisp, clean air with a hint of woodsmoke. Brings to mind books by Laura Ingles Wilder and poems by Robert Frost. Makes me want to watch You've Got Mail and episodes of the Gilmore Girls.

I love all of the school events that happen in the fall. I work in an elementary school and nothing thrills me more than all of the pumpkin / turkey / pilgrims / cornucopia displays outside of our classrooms. The school cafeteria begins to occasionally serve us a full Thanksgiving dinner, just because they love us (and are trying to secretly fatten us up).

I love the colors of fall: dark green, rust (yes, that's a color), and brown. My mom used to fuss at me for wanting to wear only drab, "natural" colors as a kid. She thought I should be wearing more pastels but I wanted to dress like a park ranger. And because my parents put me on a budget at age twelve, I had complete control over what I spent my money on and therefore, what I wore. I have a feeling that my mom retained secret veto power, but as a kid, it was a heady feeling to pick out and pay for all of my own clothes. More about the budget later.

Back to the season....

I love the crunch of the leaves in the yard. Almost makes me want to rake. When I was a kid, living in East Tennessee, we used to pile the leaves up in a ditch and burn them. That smell will be forever etched into my memory. This time of year makes me miss living in the country.

But I'm glad I don't live in the country anymore because I love going to the mall this time of year. The major department stores are already decorated for Christmas, complete with trees, big red velvet bows, and twinkle lights. Starbucks is serving pumpkin spice and peppermint mocha lattes in the red cups. People are still generally polite due to the fact that there are still eight weeks of shopping before Christmas.

I look forward to spending time with family and friends during the holidays. I look forward to sleeping in (that is, if my children will let me) and wearing my sweats all day long. Today is a foretaste of those glorious vacation days. We don't have school today (Election Day) and I've spent the entirety of it (even when I went to vote) in my pajamas. God bless America.

Last but not least, my awesome church (12 Stone) always does something amazing for the community during the holiday season. We find out what this year's project is at the end of the month and I can't wait to see how we are going to bless the people of this community this year. When I think about all the things I love about this time of year, I am reminded of just how blessed I have been. I hope that I never take it for granted.

Blog Post Number One

I have typed out several opening paragraphs and discarded them all because they just sound stupid. I have no idea how to blog, so I'll just write like I'm talking to a good friend.

Life is hard. If you don't already know this, you will soon. I lived an extremely charmed life for my first 33 years. Not that my life is miserable now, but I don't think I fully appreciated just how uneventful my life was before. Before what, you ask?

It's hard to say, exactly. So many unexpected things have happened to me over the past 18 months that I'm not sure which of them officially removed the rose-colored glasses from my eyes. But for someone who likes to be in control of her life, learning the lesson of "letting go" has been the hardest.

Last spring, Darrell and I were trying to decide if we wanted to have another baby. Joshua was three, and we thought it was "now or never" if we were going to add to our family. Neither of us was opposed to a second kid; we were both vehemently opposed to another baby. You see, we don't do the "baby thing" well at all. Lack of sleep turns both of us into screaming banshees (well, maybe me a little more that D). There is nothing about babyhood that I enjoy. If that makes me a bad mom, then so be it. We officially decided "no more kids."

And so, of course, we got pregnant. That is generally how those things work, right?

As time went by (and the morning sickness subsided), we got excited about our new addition. Joshua was excited to be a big brother and we were all relieved when baby Caleb arrived without incident in January 2010.

On February 15th, we got a call from our pediatrician that Caleb's newborn metabolic screening had come back positive for cystic fibrosis. What came after that was a hellish two months of tests, doctor's visits, sleepless nights, emotional breakdowns and deals with God. The final verdict: pancreatic sufficient cystic fibrosis. Maybe I will post the specifics in another blog post; suffice it to say that pancreatic sufficient cystic fibrosis is associated with a milder version of the disease.

Two days after receiving Caleb's official diagnosis, we found out that Joshua has a significant hearing loss in his left ear. Permanent nerve damage and damage to the hairs in the cochlea. Many tests would follow (some we have yet to complete). Needless to say, that was a blow from out of left field. I'm pretty sure that was the worst week of my life to date.

Through it all I have been amazed at God's provision in our lives. As difficult as this year has been, I have grown stronger in my faith in God, and I am learning to put my trust in Him to provide for all of our needs. I am reading my Bible daily and spending much more time in prayer. I have experienced the peace that passes human understanding, even in the face of devastating events. There is so much more to tell, and I will elaborate in future posts.

I hope that through this blog I can share some of the encouragement that I have gained from God's word and the exhortation of close friends and family. If my first 33 years were "charmed", then my prayer is that my next 33 years be "blessed." My desire is to live my life in a way that brings honor and glory to God.

Thankful

Dear Senator Collins (and McCain), My seven year old son Caleb has cystic fibrosis and I want to THANK YOU from the bottom of my heart for...