Trust

I place a lot of trust in C's doctors. Because even after all my research, I'll still never know all that they do. So I have to trust that the decisions they make are with my daughter's best interest in mind.

This is difficult sometimes.

Yesterday, C had another checkup with her pediatric dermatologist to track the progress of her hemangioma. As I had noticed, not much has changed lately. The propranalol seems to have stopped shrinking the hemangioma, but is at least stopping it from growing larger. So we discussed options. Options are scary when coming from a specialist in a children's hospital.


The first option is a topical cream to be used in addition to the propranalol. Clobetasol is a highly concentrated steroid cream that should ideally lessen the redness and reduce the protrusion. Dr. Theos prescribed a thin application at bed time each night, covered with a bandage. Possible side effects include itching, burning, swelling and redness (which seems a little ironic), thinning of the skin, and, if it comes into contact with the eye, glaucoma! Needless to say, Husband and I were a little apprehensive. We started it tonight and I find myself staring at C as if I can predict a side effect.


The second option is one I have been fearing since I began my hemangioma research. Laser treatment. As I continue to read more about it, I realize it is usually performed as an outpatient procedure and often results in the complete removal of the hemangioma, but I still do not completely understand the procedure. What I do know is that our insurance company has to deem the laser treatment necessary and not simply cosmetic in order to cover the cost. So, Dr. Theos took a picture of C's hemangioma and sent it to our insurance company, arguing that, if left untreated, her hemangioma could encroach on her left eye, thus impairing her vision. 


We are waiting to hear back from them and I find myself unsure of the answer for which I am hoping. Researching something as vast as a hemagioma is disheartening. While many are completely gone after treatment, there are just as many that leave scars and skin deformities The photos of these children is more than I can take. C's is relatively small and will most likely vanish without a trace after treatments and time, but the alternative is so scary sometimes.


Every mother wants the best for their child. You want them to be healthy and happy. To know that they are special, important, kind, smart. You want them to learn to embrace their differences and celebrate their strengths, but you hope they won't have to learn these lessons by personal experience, especially at such a young age. I worry that if it isn't gone by the time she starts preschool, kids will ask her what happened. They will point and stare and it will be at this moment that she realizes she is different. It will be in this moment that she suddenly feels different. And I worry that my words won't be enough to fix it.


The anxiety I feel in public is palpable. C is reaching an age where she won't wear her "signature headband" without tugging and pulling at it, exposing the deep red bump on her forehead. I cringe as the same person that oohed and aahed over C just minutes before, darts their eyes to the ground, embarrassed to have seen it. I tire of explaining it to complete strangers.


And while I hate, hate, HATE that my beautiful, happy child has to go through this, I hate even more that it bothers me so much. I hate that I care what other people say. I hate that I am constantly watching, constantly on headband patrol. I hate that while my child is happy and otherwise healthy, my focus is on this bump at least three times a day, with each dose of medicine. 


But still, among all of the hate, is gratitude. I am grateful that she only has one lesion and not ten. I am grateful that we have this superior level of healthcare available to us. I am grateful for new research and new treatment options. I am grateful that my sweet sweet girl has no idea what it is and probably won't for well over a year. I am grateful that my child is happy and healthy. And I am grateful to have family and friends who will listen to me when I need to vent, when I need to be angry and who love my child beyond measure.


I have so much for which to be grateful and I put my trust in C's doctors. I trust that everything will be okay. I trust because I can do nothing else. 

Fists Full of Fur

Catherine has a new best friend. He's six years old, likes to nap, and play outside. He drools a lot and is also furry. Did I mention her new friend is our dog, Banks?

We discovered a few weeks ago that the only thing that would make Catherine smile 100% of the time was Banks. She LOVES him. She pulls his ears and grabs his lip and has her little hands full of fur. And Banks just takes it. He walks by and she giggles uncontrollably. He plays in the backyard and she lights up.

Husband and I got Banks together when we were in college, had only been together for a few months, were broke and were living in separate apartments (he has a hyphenated last name). And now, almost six years later, he is providing endless entertainment and love to our little family.

Good Boy.

I'm pretty sure her first word will be "Banks."

Sweet Puppy

The First Five Months

Five months old. Unreal. I still retell the story of her birth like it happened yesterday. I remember holding her for the first time like it were this morning. We brought her home just five minutes ago. But, somehow, five months have flown by in five minutes and I look at my sweet girl and am even more in love than I was that first minute. She is sweet, cheek-puckering-cotton-candy-cavity-causing, sweet. I can't get enough.

The fourth month has been so much fun. Don't get me wrong. I loved the sweet snuggles, and the sleepy moans, and the newness of the first three. But, with the fourth month came so many new discoveries. So many unbelievable changes.

She worked on sitting up:

And growing teeth:

She tried...and rejected... rice cereal:

She learned to roll over:

And she started to laugh:

She discovered a new favorite past time:

And her feet:

And a best friend:

Seriously, so much fun. I've watched her day by day, develop more into the person she will become. She is discovering the world around her and I have a front row seat.


So far, five months has brought baby's first cold and been fussy and severely lacking in sleep, but I have great expectations. If four months could be this much fun, it can only get better. Here's to my sweet sweet five month old. 

Grow, baby C, grow.

Baby's Got Bling

Toddlers and Tiaras

What better way to perk up a dull afternoon than to tune in to watch overweight stage moms parade their children around like show dogs?

I can think of no other way.

Lessons from the tiniest little divas (and their parents):

1. Spray tanning starts at 11 months old. Let's face it. There is nothing less attractive than a pale baby.
2. Spray tanning can be expensive, but don't worry. You can learn how to do it at home OR  just go down to the local auto paint and body.
3. If spray tanning isn't for you, just remember that a natural tan makes her "a lot more, um, prettial and natural" than other girls.
4. Are you a gay man trying to pass as straight? Look no further. You can marry a pageant mom, learn to sew rhinestones on dresses, and become a "diva dad". It fools everyone.
5. Pageants are stressful. Make sure before her big day, your little diva has a spa day to unwind. Being four is tough.
6. Never leave for a pageant without "special juice" and "treats" also known as Red Bull and Pixie Stix.
7. You have a natural advantage just by being pretty. "Popular kids aren't ugly. Kids that are pretty get recognized sooner... It's just the way of the world...y'all need to, like, live in the real world."
8. No one likes a unibrow. That's why it's important to start eyebrow maintenance early with shaving and waxing. No pain. No gain.
9. Always travel to the glitz pageants held in fancy hotels like Holiday Inn or in school gymnasiums. Local pageants are completely unfair. The kids that have cancer or some illness always sway the judges. 
10. Your child's name should make a statement. (Examples: Paisley, Jackynn, Aniston, Maverick, Tootie, Jayla, and Saryniti (pronounced serenity))

Television gold. Sometimes, you need a little comic relief in your day. Where would the world be without terrible reality television? If nothing else, it certainly makes me feel like mom of the year.

Measure by Measure

Operation Goodbye Hemangioma

Day 69

After voicing my frustration with C's treatment, I decided that my eyes can no longer be trusted in determining whether or not the propranalol is working. So, today, I've started measuring the hemangioma and will do so each week to see how she is progressing. I am a list maker, a planner, the annoying mom who brings a notebook and photos of progression to each doctor's appointment. I need something concrete. I need something to prove my eyes wrong and make me feel better about purposely lowering my baby's blood pressure.

So, today, on day 69 of treatment (now at 0.8 mL every 8 hours), the hemangioma is measuring 3 cm long, 1.5 cm wide, and 0.8 cm protrusion. 

Day 69 of treatment

And, again, to make myself feel better, a side by side comparison from day 1:

Day 1 : Day 69

Side note: look how expressive C has become in just a couple months!

I know I can see a difference from Day 1, which is always positive. And the hemangioma is definitely interfering less with her eyebrow, but I'm not sure if it is simply from her growth and stretching of skin or from the actual shrinking of the hemangioma. We will go back to see Dr. Theos in 9 days and will hopefully be moving forward. Until then, I will diligently watch, measure, and take notes day by day, measure by measure.

Never Say Never

Yep, I did it. And I place all blame on Amazon and their "recommendations."

I bought a "Baby on Board" magnet for my car.

I always said I would never do it. I openly mocked those who did.

But my thought is simply this: when we are on the road at night driving back and forth from the lake, maybe the guy riding my ass will feel bad and just pass me instead.

I do, however, promise to never ever put the stick figure family decals on my car.

I'm serious this time.


**UPDATE: Said magnet arrived today and upon installation, I realized that my rear hatch is, in fact, not metal. So I just stuck it on the driver's side. I guess the guy riding my ass won't see the magnet until he is actually passing me. Perhaps the guilt will come later. The magnet is nothing if not a great teaching tool.

Patience for the Patient

Operation Goodbye Hemangioma: Day 63

Patience is a virtue, a fruit of the spirit, etc. Whatever you choose to call it, it often is a great test, one that we are certainly straining to pass and one that C continues to pass with flying colors. 

Today is day 63 of C's treatment of propranalol for her hemangioma and I am finding it difficult to see much of a change. At her last appointment (which was a couple weeks ago), the doctors basically told me the same thing as before: that it hasn't increased in size, which is good, and that the graying in the center means the medicine is working. While that is seemingly good news, it is the same good news we received over a month ago. To add to our less than exciting day, it took them no less that ten times to get a read of her blood pressure. Apparently, they don't make cuffs that are the right size for C since she has outgrown the infant cuff and is too small for the child size. By the end of the appointment, C was exhausted to tears (and so was Mommy).

On a positive note, we were able to increase her dosage to 0.6 mL for two weeks and then increased to 0.8 mL yesterday with no side effects. The last time we tried the 0.8 mL dose, she was too small and the drastic drop in blood pressure was more than her tiny body could handle. Hopefully, this increased dosage will also mean an increase in results. I am optimistic.

One of the residents (who happened to be a college classmate of mine - small world) mentioned that there is a topical treatment that may reduce the redness. Dr. Theos wants to make sure that C is doing well on the 0.8 mL dosage before adding any other treatment, but may talk to us about that addition at our next appointment at the end of this month. I am willing to try anything that is non-invasive, non-surgical. The thought of any surgery on my tiny little girl makes me nauseated.

So, we will wait. We will wait until our next appointment to see how things have progressed. We will wait to add additional treatments to the mix. We will wait until this bump shrinks to nothing. We will wait. I'm working on this patience thing...

Waiting patiently with my perfect little patient...