Archive for the 'Diagnoses' Category

15
Mar
16

Don’t Tell Me It’s “FINE”

He’ll be fine.

It’ll be fine.

My daughter only weighs 5 pounds more than him and she’s FINE.

I knew someone with clubfoot and he’s fine.

My preemie was never in isolation and she’s fine.

FINE. FINE. FINE.

Yeah, he’s mostly fine. I am not fine. This may turn out to be nothing. I hope to God and all the other powers that be that it turns out to be nothing. But if it is something? What then?

Someday, I will learn that when an acquaintance asks me how I am the truth is almost never a good idea.

“How are you today?”

“Ok.”

“Aw, it’s a pretty spring day. Why are you just OK?”

Because I’m waiting to hear if my child has a serious condition and the specialist appointment is still 3 weeks away. Because, I just don’t feel fine today.

I need to let it go. I need to stop the negative cycle so I don’t beat myself up when (hopefully) everything is fine.

The difference between me and some other moms out there? There have been 4 (5 if you count the scary pregnancy) years of moments when a ton of crap wasn’t FINE.

Because I actually like and respect this person, I went with a bit of truth. (mistake)

“Because we have to add a specialist from Children’s to Drake’s care team…again.”

Then, I had to give more of the story than I really feel like telling. I really want to be that optimistic mom, the one who is unshakable and believes the best until the worst is confirmed. Unfortunately, being positive is something I suck at.

To top it off, he only ate about 300 calories yesterday. GRRR.

Poor blog, I only feel like journal-ing when I’m “sad mad.”

 

08
Mar
16

Tomorrow!

Well visit tomorrow to discuss all the things (and get shots, yuck!). The nurse called yesterday for the pre-planning phone session. I picture the RN’s at our pediatrician’s office doing paper, rock, scissors over who has to call me. “Oh that’s the mom that will actually have real, scary questions. I’m doing that one after lunch!”

I have my pediatric research data file and questions in hand. I really hope I am not over “Dr. Google-ing.” I tried to limit myself to one week buried in fear and seeking answers online. Then I stopped (until today) in an effort not to fall into what hubby calls “my cycle of negativity and panic.” Husband and I discussed our plan. We present our findings and feelings, we listen to our trusted pediatrician’s feelings, and if we aren’t comfortable with his opinion we will request a referral to the specialist at Children’s.

I’m still unsure about genetic testing. I don’t know if we should start with the genetic counselor and then go to the specialist. We’re just really lost still and we are praying that our pediatrician can steer us in the right direction without dismissing things entirely.

We’re also hoping our growth chart results are still ok. He’s been fluctuating between 28.3 and 30.6 pounds for the past year. He did top off at 31.2 at his last specialist appointment, but that just seems awfully small for a 4 year old. He was also borderline on anemia last year, so I mentioned whether we should do that check, also. And Orthopedics follow up is Friday for our first annual clubfoot check up after giving up night-night shoes!

On a positive note, HE EATS VEGGIES NOW!!!! One night we sat down at the table and he just started gobbling up peas. I was so flabbergasted that I stared, but luckily I kept my mouth shut. Now he will request peas as a snack. Preschoolers, am I right?

 

 

 

24
Feb
16

Panic and Humor

When you are a preemie parent, you think that you have that advocacy thing down. Especially when it comes to all the yucky medical stuff. I am learning that I have a long way to go to possessing expert skills.

D’s recent diagnosis raises some serious concerns about potential health issues that may follow him all the way to adulthood. Like pretty much all of the ones he’s gotten or any of our kids have, I guess. I don’t have much to go on yet. His well visit is 3/9. I need to figure out what to ask, what to push for, and when to look at other opinions. I know this is something that can’t just be ignored. The research is scary. The little bit of info I’ve found out about other pediatric patients is scary. Dr. Google is just scary.

I think I naively believed that nothing could really shake me more than his birth. I’m so used to the preemie, hypotonia, and developmental communities having massive resources out there that the void of information I am faced with is just as scary as the panic I’m trying not to have. So to diffuse the feeling of not being able to breathe, I’ll share the mistake I’m able to find some humor in right now.

Don’t forget the snacks.

On Friday, we had our annual eye appointment at the children’s hospital. These appointments always take a minimum of 2.5 hours.  I took D to brunch with his grandma and great-grandma right before our appointment. However the 1/4 of pancake, 2 bites of eggs, and 1/3 of a slice of bacon he ate didn’t last long.

About midway through our almost 4 hours in the clinic, D starts hollering, “I’m hungry! I’m HUNGRY.”

I search my giant bag of coloring books, monster trucks, and crayons for the crackers and fruit snacks I had stuffed in that morning. NOPE. Just a juice box. Apparently, all the snacks are sitting in their neat little baggies on my kitchen counter. AWESOME. I try anyway.

“Ok, buddy. Here’s a juice. That will help your empty tummy,” I coax hopefully.

‘Cause that was totally going to placate an already bored and pissed from having the burning dilation drops kid, “I am not THIRSTY, I’S HUNGRY!” He booms.

I stare at him with an “are you kidding me” kind of look on my face because really folks this 1 day from 4 years old little dude weighs a whopping 30.6 pounds. He’s never hungry or never eats when he is.

Then he starts to cry, so I pick him up to try to calm him down while still trying to offer the fruit/veggie juice. I was rewarded with a series of reaching tantrum proportions, “I’S HUNGRY”‘s. After about 5 minutes, a staff member brings me a bag of goldfish crackers, and I thank her like it is manna from heaven.

He ate five. 5 tiny fish crackers. 5! (and I was happy he ate them, but still)

And because life likes to add insult to injury, his doctor, a teaching professional expert at the #3 children’s hospital in the freaking country apologizes to me for the staff not offering the snack faster because another parent complained that it was sad he had to wait that long. OMG. My mortification over forgetting the freaking afternoon snack almost reduced the impact of the diagnosis. Honestly, I’m still kinda mortified about it.

Post-goldfish bliss

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Drake’s 3rd Birthday

February 20th, 2015

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