Friday, April 27, 2007

OK

Everything is OK right now.... Pearl asleep in her crib and the two older girls down for a "Movie Nap," I and my butt (yeah, two separate entities today) planted in front of the computer for a little bloggytime. It's OK. The emotional meltdown of last week is gone, and there is a short break from the family festivities of this week.

Well, not really a "break" but I am
taking a break. My little brother is walking onto a podium in a few minutes to pick up his degree from BYU Law School. Rock on little bro!

Fiddle-dee-dee, I do this when I teach my once-a-month stint for Relief Society... I feel this compulsion to explain to the listener how I arrived at the lesson plan for the day. Like it will somehow add to the experience for you, or help you understand the material better if you hear how I distilled it from the assigned topic du jour. I'm sure I apologize for it every month... and then I do it anyway. And so you get this explanation for my post.

Fruitcake.

I wasn't really planing on going to see him walk... to be honest, I cannot see getting a babysitter or calling in a precious child-care favor so I could go sit on my can for a few hours to get the pleasure of seeing the man get handed a slice of paper... no matter how HARD EARNED, expensive and life changing that paper may be. I'll see him later tonite and I'll make sure to clap loudly and whistle a few times to make up for it. Even if I had planned to go, I wouldn't have gotten to anyway. Pearl has been declining a little the past few weeks.

Don't panic, we are OK, she is OK. As a matter of fact she is growing and doing. Today at the doctor's office she weighed in at 26lbs... maybe six pounds or so lighter than LaLa. She spent all day yesterday climbing up and down the stairs at my little brothers new house, trailing after all of the older kids. She is doing everything she should be. It is just so painful to listen to her breathing, so hard to have this constant reminder of her mortality. Not so much the gooey and grindy quality of the breathing, I am mostly inured to that It's the new note of harsh, tight whistling, and the barking sound that accompanies a deep intake of air to cry or yawn that has been getting worse the past few weeks. I have been calling it "asthma exacerbated by allergies" and it may be so, but yesterday as I lay next to her sleeping little body, and watching her working so damn hard for every breath...

well...

We went back to the doctor's this morning to see if he thought that my pseudo-diagnosis of allergies might be correct, and if so, could we get some Baby Zyrtec. Plus also, could he lean on the Pulmonary Specialists to get us an earlier appointment than her current June 27th visit.

As alarming as her breathing sounds (and our doc was quite alarmed), she
is breathing. She is thriving and developing even with how hard she has to work for the oxygen, and this will likely not get her in to the specialists any faster, but it never hurts to try. If she can live with it, then so can I. And to that end we picked up some more oral steroids, and a script for that Zyrtec with a "who knows, maybe it will help." I will also start carting her nebulizer along on any day visits, for while it doesn't seem to make much of a difference, I'll take any kind of happy placebo to relieve the tension that builds in my heart after a day watching her entire torso pump in and out to that horrible raking sound.

There may be a few things we can do before we hit the Pulminologists's. Perhaps another little procedure to get a look at her throat down past the larynx again. Who knows what they might find now that the view is not obscured by the presence of two pennies in her esophagus. Plus maybe the CT scan person was wrong. Plus maybe, maybe, maybe I can let it go and have some faith. I am doing what I can, I really do know that I am... that things will work out fine.

But there are those times in the middle of the night that my heart races and I can hardly even think it in words.... but I DO think it. Maybe, just maybe my sweet little girl is too sweet. Maybe I don't get her for very long because maybe she doesn't need mortality for very long. It's sad little dark times like that, that I wish I were Greek. I understand the comfort that comes of spitting on your children to show any demon or darkness that might consider harming your child that they are not too loved or too special. See? I spit on them! They suck! You don't want a child that is spit on by their own MOTHER! No need to even things up
here!

What a downer of a post, huh? I'm gonna have to call it Post Therapy, because most stuff in Chaos is pretty OK and we are doing our regular stuff every day. My blogtime has been cut into by reading and writing with Birdie (she has announced that she is so desperate to learn to read, she will deign to be taught by her
mother), and the increased time spent outdoors as the weather improves... and the arrival of a Wii! But all this will no doubt all settle out and I'll be back around again. Maybe tomorrow? Next week?

13 comments:

"Mom" said...

No comment really, but lots and lots of hugs. If you need me you know where to find me.

Nobody™ said...

I'm very sorry to hear that Pearl isn't getting better. I hope you find some answers soon.

sari said...

I'm praying for Pearl and for peace of mind for you. It sounds tough.

Elizasmomsmom said...

Glad to hear you talk again. And the best of luck to you and little Pearl and all the rest of you. I am sure it will all turn out well.

elizasmom said...

Oh, Bon, I can see why you had a rough week. Geez, I teared up just thinking about how I would feel in your place. Hugs to you and Pearly, and I am sure she will continue to thrive. Sounds like she has a fighting spirit that is unhampered by her breathing issues. Hope nonetheless that the doctors are able to shed some light on things...

Fantastagirl said...

oh wow, you ARE having a rough week. I hope Pearl gets to feeling better, that the appointment gets moved up and that you can figure it all out! It's so stressful - to not know what exactly is wrong and how to fix it.

Sending hugs, and prayers...lots of both.

Mama D said...

I did an awful lot of sighing while I read that post. My heart was hurting too. I cannot imagine how you must feel to watch/listen to your baby having such a hard time breathing. I am however, confident that she'll be with you a long, long time and that things will be resolved or at least figured out and able to be managed. And that's what I'll be praying for too!

Exciting about the Wii!!! Can we come over and play? We'll bring the PS2 and Karaoke Revolution American Idol!!

Shelli said...

I kept thinking, "They should do this for her," and then you said that they were and then I would think, "They should do that for her," and you would say that they were, so...It will be okay. Will she be having a bronchoscopy? My nursieness is kicking in. If you want me to tell you a story about a happy ending with similar symptoms, shoot me an email and I will.

sarah k. said...

Sweet little Pearl. I can't even empathize, because I've never had that kind of worry or uncertainty. But it makes my heart hurt for you and Pearl. She's got a good mama. We'll keep praying for you.

Meredith said...

Oh, this is a very hard post to read. I am sending you my best good vibes. Do you have a PPo so you can go and see a specialist whenever you want? You might want to see one somewhere else if they can take you sooner??

Nancy said...

Oh no, Bon. How scary for you all. Best wishes and lots of hugs to you and to Pearl and everyone in Chaos -- hope you get some satisfactory answers soon.

xo

Pendullum said...

You are a brave strong woman...
And this is exactly what your wee fighter needs in her court...
I hope they find answers soon for your dear sweet Pearl...
She is a determined wee girl... and she has all of us praying for her...

Anonymous said...

I can't stand the thought that you have to wait for two months to get an appointment for a baby that is clearly suffering!!!!!! (Would put more exclamation marks in there but I know I am talking to an intelligent crowd here who would get it with just a few of them). This is so wrong about our health system!!!! (More of those!) We need something better!!! (More!!!) My thoughts are with you. This is tough.