Thursday's Thought

Thursday, August 30, 2007

"In spite of illness, in spite even of the archenemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiousity, interested in big things, and happy in small ways."

- Edith Wharton

Getting Stronger...

Monday, August 27, 2007

She really lifting her head up well (granted it's on a wedge, but that's what they're for - by working on the wedge, she's that much closer to lifting her head directly off of the floor - against full gravity).

And yes, that's a bald spot on her head:( - she has a case of cradle cap. Our pediatrician recommended Selsun Blue, which seems to be working but makes her smell like an old man (no offense meant, Gpas!)

Helping and Being Helped by the Intellectually Impaired

Bryce and I read this article for Family Home Evening tonight. It's talking to members of our church but many thoughts will interest anyone. Some parts of the article brought back difficult memories, but, after reading it, it was nice to read about others who had similar feelings to us.

Cranial Synostosis Surgery and Other Updates

Sunday, August 26, 2007

It has been awhile since we've updated you about Caroline's upcoming surgery. In the last few weeks, C and I met for the first time with the neurosurgeon who will operate on C alongside the cranial plastic surgeon. The neurosurgeon expressed concerns about operating on Caroline in September because of her heart and lung problems. He stressed the surgery's seriousness - the need for blood transfusions due to blood loss, ventilation, long recovery, etc - and suggested that we think twice about doing the surgery in September.

He then talked with the cranial plastic surgeon about that, who said that we will postpone the surgery for awhile. He'll see us every month to check on her, consult with our pulmonologist and cardiologist, and from that, decide when the optimum time for surgery will be (sounds like it won't be until she's a year old, which is good and bad - good because we don't want her to have to go through that surgery any sooner than she has to but bad because the earlier we do it the more malleable her skull is).

We also met with another ENT, based on a referral from the pulmonologist because he believes that Caroline's low oxygen saturation is due to an upper respiratory problem, not something in her brain or lower respiratory system (we are still waiting on the results of a chest xray she did last week to confirm this).

The ENT examined her mouth and did a scope of Caroline's nose and throat (he put a little cord with a mini-camera on it through C's nasal passageway - she did not like that) and found that C does have two upper respiratory problems. The main problem is Caro's tongue is set high and far back in her mouth, so her tongue tends to fall back and cover her airway. This is caused because Caroline's head is more narrow between the ears than average anatomy. In fact, the only reason Caro can breathe without a trach (tube/machine inserted in the throat to allow breathing) is because she has a high-arch palate - this allows air to get in and out even when her tongue has covered up much of her airway.

The secondary problem is that she has laryngomalasia, a problem where her epiglottis(tissue that protects the windpipe or trachea) is not fully developed and is weak so the epiglottis tends to collapse and narrows her breathing passage. Both the tongue issue and the laryngomalasia are almost definitely also contributing to her eating problems.

The ENT believes that the main solution for these problems is time - he says that laryngomalsia goes away on its own in about 99% of kids and the tongue may lower and come forward as her anatomy matures and expands. The pulmonologist and the cranial surgeon also said there is a jaw surgery that can help with the tongue problem; they're going to keep that in mind as another option for her.

Obviously, we have copious amounts of information to absorb and decisions to make. I believe these doctors are very good and am glad they use caution to deal with Caro's health problems. We pray that they can draw the best conclusions for her based on the information they have.

B and I know that you pray for Caroline frequently, but, in the next few days and weeks, will you pray specifically that Caroline's doctors will have the insight to correctly identify her heatlth problems and the best solutions to deal with those problems? Will you also pray that B and I will know which medical treatments will be best for her and which to approve? I feel like the next month or so will be critical in that regard.

Thank you very much.

My First Post

Saturday, August 25, 2007

As my first post to the blog, I thought it should be something enlightening, informative, and above all else, memorable. Therefore, I introduce to you my favorite summertime show Ice Road Truckers on the History channel.

From the New York Times: "A certain television viewer, the one who hates network fluff but who cautiously enjoys an informative program about life’s gritty hardships (and workaday chances for swashbuckling), may find himself with a hole in his schedule — and a quiet longing in his stoic heart. " I am one such viewer. The season just ended, so you will have to check out reruns.

Thursday's Thought

Thursday, August 23, 2007

"Don't become frustrated because there are no obvious victories. Some things cannot be measured. If you are striving for excellence - if you are trying your best day by day with the wisest use of your time and energy to reach realistic goals - you will be a success."

- James E. Faust

Lifting your head is hard to do!

Monday, August 13, 2007

The first set of pics is Caro trying to lift her head up while fully on the ground (the hardest position because the most gravity is working against her). The second set is her using a little foam wedge that we're borrowing from Therapy. I took these during last week's photo shoot.

I think I can, I think I can...

Ready, Set...

GO! (This is really good; she has most of her head up off of the ground without any help from me.)


I'm thinking of a number...

I am strong, I am invincible, I am Caro


I'd rather put my fingers in my mouth than lift my head.

Hello world.

My fingers taste funny.

I'm spent.

Caroline Laughs Again

Wednesday, August 8, 2007

Last night, Caroline and Bryce were hanging out. He had her on his lap playing with her legs and tickling her feet, and she just started laughing and laughing! Her smiles and laughs are still pretty rare - especially the laughing. She kept laughing for like 10 minutes and responded to tickling under her arms too. It was wonderful; we feel blessed that she is able to express herself like this.

Stats Update

Tuesday, August 7, 2007

Per an appointment with her Gastroenterologist, Caroline is now...

11 pounds, 2.4 oz and 24.6 inches long!

Yesterday's photo shoot

Little Hands

A lot of people ask what color her eyes are - this flash shot should help settle that question.

Working hard!

Are we done now?!?


Monday, August 6, 2007

Here's a pic of our adorable Little fast asleep - more to come tomorrow (unless things get too crazy - in that case, the day after tomorrow :)...

Thursday's Thought

Thursday, August 2, 2007

“Happiness does not depend on what happens outside of you, but on what happens inside of you. It is measured by the spirit with which you meet the problems of life.”

-President Harold B. Lee

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