Tuesday, November 25, 2008

Free at last!

As if we didn't have enough pictures of Faith in the hospital....
Can we say Deja'vu?- "Wait a minute....this is all a little too familiar..."

Oh I know this place! Ok now I am feeling right at home!

Just wanted to give you a quick update that we are home from the hospital! Between not sleeping, work, and getting all of Faith's new orders straightened out for our nursing agency, finding time to blog has been at the bottom of a long list of things to do this week.

Thanksgiving break (which starts today at 3:05...and no I'm not counting... ;) ) couldn't have come at a better time. We'll spend tomorrow looking for a new car....sounds like fun but I think I'd rather listen to nails sliding down a chalkboard all day (don't quote me on that though....). After 5 years of good up keep and responsible stewardship (whatever that means) we paid off our "family car" this summer. Only to have it totaled in a car accident (that was not my fault) a few weeks ago.

OK well enough of our drama....Faith is doing good. She's pretty much back to her little spunky self. If only we were that resilient!

If I don't post until then, have a WONDERFUL Thanksgiving everyone!

Brian and Jen :)

Saturday, November 22, 2008


Faith is doing MUCH better. What a difference 24 hours can make- on both sides of the day. Thursday night she was doing fine, morning came and she was not herself. As the hours progressed she began to worsen. We called Faith's pulmonary doc. and he suggested we go in to the emergency department. Since we already had an appointment the following day at the hospital (yes, on a Saturday) we thought we could wait it out. When she started turning colors we gave in and decided it was time to take her in.

So we here are. Good news is we are out of the PICU and back in our old room on the 8th floor. Faith's is still on higher vent settings (but off of the more powerful vent), and receiving a double dose of IV antibiotics to cover whatever junk she is growing. The good news is she is back to her spunky self (minus a trach full of blood tonight. And no, we have not been suctioning too much, in fact she's only been suctioned once today). Our hope is that she will be discharged tomorrow. A two day hospital stay? We'll take it.

I guess Faith just needed to visit her extended family for the Holidays. This all could have been a lot worse- it was pretty convenient it all happened on the weekend, and we were among familiar faces everywhere we turned. Friday night in the PICU, our nurse was one of Faith's primary night nurses from a year ago and the respiratory therapist on duty for the day was an RT we knew from St. Joe's. Of course we were among friends on the floor including one of Faith's primary nurses who took care of her for the 8 months she was in this room, and our favorite CA was here as well.

It's pretty surreal sitting in room 827 tonight. As you know, Faith was the first tenant in this room. The holes are still in the wall where her monthly calendar hung, a paperclip that held her butterfly kite is still hanging from a ceiling tile, and the butterfly I drew under one of the shelves with Faith's initials is still there. While our markings are still in this room a lot has changed since then. Our little girl no longer just lays in her crib unaware and unresponsive, nor sits on the floor, self-stiming, barely able to hold herself up. We had no idea how much she had shut down during those months until we saw her transform at home.

She is so aware now. She fights the doctors when they put their stethoscopes to her chest and challenges anyone who dares to suction her, with her IV fisted hand. Gone are the days where she would just lay lifeless during a blood draw.

She knows there is a world beyond these hospital walls and she knows she doesn't belong here. And we know this too. Eight months ago taking Faith home was terrifying. Last night when we arrived in the ED our nurse nervously asked us if Faith always looked this bad because "she looks terrible and you are both so calm.."

Yes, she did look terrible but we knew she would be OK. We knew she was in good hands, ours included. What a difference 24 hours makes...what a difference shedding one's cocoon can bring.

In the words of Hans Christian Anderson, "Just living is not enough," said the butterfly "one must have sunshine, freedom and a little flower."

Thank you for all of the well wishes.

Here's to our next update being from our little flower; home.
Jen and Brian

Friday, November 21, 2008

Welcome to Respiratory Season!

Can you guess where we are???

Y'up. We're at our second home, the hospital.

Faith took a turn for the worse today and continued to go downhill respiratory wise. She was cranky, dusky, and really working to breathe.

She is normally on 1/2 liter of oxygen sating 98%- she is now requiring twice the amount (1 liter) and in the low 90's (which isn't bad..but not herself...) we've increased her vent settings and she's still really working to breathe. She is now receiving IV antibiotics....so we're bunkering down for the weekend.

Right now we are in the Emergency Deparment waiting for a room in the PICU.

Lot's of other things to say....but too tired explain it all.

We'll keep you updated.


Thursday, November 20, 2008

Eye update

"I will walk by Faith, even when I cannot see, because this broken road prepares your will for me." -Jeremy Camp

Dear Faith,

Like most medically complex kids, you are a frequent flyer at doctors office. I have never been consistent about keeping up with a day timer, but with all your various appointments I've had to learn to use one. Two BIG appointments this week; I like to refer to them as the crystal ball appointments. OK..not really...I used to thing that a visit to the opthamologist (eye doctor) and ENT (Ear, Noes, and Throat) were a gauge for what the coming years will bring us. Now I know better, however I do get a little bit anxious when I know these two "biggies" are coming.

Yesterday was your opthamology appointment. I was looking forward to this appointment because it was a fresh start. We have been very blessed with WONDERFUL doctors who have cared for you. We are very fortunate to live in a place where such great care is easily accessible. The one area I feel we have not had very much luck is finding an eye doctor who not only understands what is going on with your vision but can articulately explain it to us. So when we heard your eye doc. at Children's was leaving and the earliest they could get us in with anyone knew was NEXT April I knew it was time to make a change. Fortunately I knew who to call and they referred me to a doctors who specialize in kids with vision loss.

Although the appointment was grueling 4 hours (why we were the last patient seen but we got there at 2:45pm I don't know...very frustrating..but typical..)long it was informative.

The new doc. did not have any records of your past eye exams and I gave him very limited information for the purpose of wanting an unbiased opinion. In a weird, twisted way I was comforted that he had the same diagnosis you received in April 2007 after undergoing two eye surgeries. He used terms I had heard before; scarring, macula dragging, Monocular Exotropia, Malignant Myopia......Obviously he knew what he was talking about. He confirmed what we already new about your left eye.....so eloquently articulating that the eye is "trashed..." aka blind. He was very apologetic....I laughed, thanking him for his sincerity but reiterating the fact that we have had a long road and are WAY over the fact that our daughter is legally blind.
Interestingly he found that your glasses prescription for the right eye was WAY off. This did not surprise me in the least. You have about a 4 foot field of vision with your glasses. He said either the last doc was way off in prescribing the strength, or that eye has gotten progressively worse within the past 3 months. While we do know that your vision can deteriorate, based upon the amount of this this doc spent testing your eyes vs. your previous exam, I think it was the former. So he doubled your the strength (from -4.0 to -8.0) and excitedly told us how this will open up a whole new world for you.

I will never forget when I first received glasses when I was in grade school. The world as I knew it did change. I didn't know it was possible to actually see when the teacher was writing on the board, or read street signs while riding in a car (I was finally a contender in the "find this letter on a sign..." car game, alright!).

I hope your world opens up just as mine did. You compensate so well for your vision loss. Most people don't even realize that you cannot see very well. Your hearing is impeccable and the rest of your senses are always on alert. You are so comfortable with the little rectangle rug you spend most of your day on; you know where to look when you hear someone at the door, you know where the dogs are coming from when there is swish of the doggy door, and you instantly smile when you hear a familiar voice....all of this without being able to see.

Most of the time we forget that you cannot see- I think this is our gift to you. While we take the suggestions from your vision therapist, we treat you as if your vision was 20/20.

It is when we are in the outside world, where you are not familiar with your surroundings, that we notice how much your vision limits you. On a recent shopping trip we not only noticed how disconjugate your eyes were but how you did not recognize us when we stood only a few feet away from you.

Although the world may seem like a dark unfamiliar place, you will learn to map it just like you have your rectangular rug. Never forget that you are a light to this world and have taught us all to see in ways we never thought imaginable.

So go out my brave little girl and let YOUR light shine,

Love you,

Mommy & Daddy too

Friday, November 14, 2008

Keeping us on our toes...

Ok...so I've fallen off the blog-o-sphere and I've been putting off getting back on. Truth be told I am too exhausted to write any letters and have been trying to find away to update all of YOU without coming across passive aggressive (if that makes sense).

Faith is now a full time job x's 2. Like a typical toddler, she is constantly on the move. However, unlike a typical toddler she is attached to a machine that leaves her with a 6 foot radius to travel.
The result? Beep...beep....beeeeeeeeeeeeeeeeep.
Boy, I wish we had hardwood floors! We are constantly chasing her around our small, crowded living room. Sometimes I ignore the beeps. A few days ago I was washing dishes and heard her disconnect. Since she is not entirely dependant on the vent I quickly washed the last dish and went to reconnect her. To my surprise she was inches away from the stairs leading down to the basement. Yesterday, I put her in front of the TV and ran downstairs to the basement to switch over the laundry. I was gone for maybe 60 seconds- I came up the stairs and guess who greeted me at the top? Y'up...can you say baby gate? I will admit our house is far from baby proofed- up until now we haven't had to.

I will never complain that all my time is now spent chasing Faith around. Her mobility is a gift. If you ever do hear me complain please remind me of this! So if you don't hear from me for a while you will know what I am doing. ;)

So off to Target I must go to stock up on all the baby safety items I thought we'd never need. Retail therapy is what we call it in our family...usually it comes in the form of a new pair of shoes or handbag...tonight it's a baby gate and an outlet protector that make a pair of Manolo's look like flip flops from Wal-Mart. ;)

Thanks for being patient with us!

Jen & Brian

PS: Yes, many of you noticed that Faith is sometimes ventless. She can come off of the vent for about an hour each day. You better bet we make this time count. When she is off we are outside, upstairs, and in all the parts of the house she cannot normally go. While it is WORLDS away from the ventilator she is still attached to oxygen tubing (something she will need far beyond when the vent is gone). As you can imagine she gets quite a work out being vent-free. You can tell she "works" to breathe and her lungs sound pretty wheezy.
PSS: To my fam. and friends: Although I am posting this now I wrote this Friday morning (pre-accident) so don't worry, I wasn't running around to Target this weekend. ;)

Tuesday, November 4, 2008

As parents of children with disabilities we face so much adversity. The average person has no idea what we face on a daily basis. I won't go into it- I have before and you all know how I feel about this.

Amendment 51 failed tonight. This was a punch in the gut. I should have put out more signs, I should have stood on street corners and waved (when I mentioned my remorse to Brian about this he said parents like us can't do things like that because we all have to be at home with our kids to give them their next g-tube feed...)

51 represented so much to us...not only would it provide relief for families and opportunities for children and adults with disabilities but it signified to us that people cared. It represented that we were worth it. It meant that the the average $50/year it would cost the average taxpayer was worth it.

Tonight I feel like people not only "don't get it" but they don't care.

I hope I am wrong.

I hope it was ignorance, not apathy, that interfered with the passing of this amendment.

It just makes me so sad.

I guess now all we can do is pick up our tails, put our heads together and think of how we can help the over 12,000 people in this state who not only facing the physical and emotional challenges of coping with a disability but now will continue to face huge financial burdens each and every day.


On a completely different note it is an honor raise a child in an era that has not given into fear, but to hope. Looking forward to change....

Monday, November 3, 2008

Just a reminder...

To my fellow Coloradoans......

You know what to do. ;)