Cool Rider

Today, Preston rode his tricycle around the neighborhood - - total distance was 3/4 of a mile. He wore the helmet for another 30 minutes or so while he played with other toys... because he knows how cool it is to wear a helmet!
(He points out people who are riding their bikes without helmets and says, "Naughty... no helmet!")

In other news, Miss Gracie had her best walking session at therapy today! Some days she doesn't want to walk at all. Today was not one of those days.
She controlled turns, got stuck and un-stuck and traveled her longest distance to date. She got to make the decisions about where she wanted to walk and I know that sense of freedom and control only fueled her strength today.

It was a good day.

Creative Control

In case you were wondering...
There is such a thing as too much creative control!


I am still cleaning the cornstarch out of her chair base!
I am still finding little bits that were tracked into the house, even after vacuuming!
The lawn is still white from where I hosed down the table and Preston!
But they sure had fun!



Gracie didn't have school Friday, Preston had been couped up in the house for ten straight days with a nasty bronchial and sinus ick (one that earned him his first ER visit on the 18th) and we no longer have a nurse on Friday afternoons (that was our only day). Needless to say, I had my work cut out to keep my little campers happy.

Our day started with breakfast, breathing treatments and while Gracie and I played "beauty parlor," Preston got to watch Max and Ruby while eating the chocolate chip cookie he uses to "chase" his antibiotic!



After all this, we headed outside for the out-of-control cornstarch and water session. Next, were baths... obviously!

Then it was time for a bit of PT and school work. (She refused to get dressed again - - no surprise there!) Preston was confined to the other side of the table because he constantly tries to take over for her. I guess a perk of her not hearing is that she doesn't know he's screaming the letter names at her!





Incidentally, she was incredibly obsessive about leaving the house each day over the weekend. By Sunday morning, she was so confused (no matter how I tried to explain) and her clock was so out of whack that at 5am, she was at our front door signing "school" and "get dressed" and kicking at the door with her heels. As much as I try, I am not nearly as much fun as real school... and I am glad she feels that way!

This morning she was up at 2am... it wasn't pretty. Around 7:00, I told her that she had school today. She flapped and wiggled her arms and legs in excitement and signed "school" and "yes."
Thank goodness for Monday morning!

More on perspective

What do you see?


Grey, windy skies?
An approaching storm?
A reason to feel gloomy?

Or... do you see this?


The summer's last sunset as viewed from our backyard.
The gentle breeze caressing the palm tree as it bids the day farewell.
A beautiful array of color and light dancing in the wispy clouds.

It's all about perspective.

Not everything that counts can be counted,
and not everything that can be counted counts.
- Albert Einstein

Perspective

"It's all relative to your own experiences," I often tell my friends and family after they've said, "I don't know how you do it." Usually this is said in reference to the frequent curve balls life throws at our daughter and us. I constantly remind them that they'd take the same steps if in similar shoes. Sometimes they'll qualify statements about their own sleepless night because they know how sleep deprived I've been for the better part of six years. I am always telling them not to do that... of course they're tired if they're used to getting more sleep.
It's all relative - - experiences create your perspective. Learning about the experiences of others can change your perspective - - not necessarily because another's situation is more difficult or dire, but so many times because of the way in which others so gracefully and positively handle such situations.

Several months ago, Hannah (my friend and sister on this journey), wrote a poignant post on Perspective. I encourage anyone reading this post to click the link and read it (or re-read it if you've previously had the pleasure). It's the kind of post that speaks to my very core - - as do many of hers. I revisited it today because in the last handful of days, several of my friends have emailed, texted or called to say that after catching up on our blog, they've once again been able to take a step back from their own chaos and what they think is currently a big deal in their lives and re-group. They kindly say that our situation - - Gracie's life and how we function as a family in spite of all she endures - - gives them perspective on their own.

Perhaps "perspective" is one of the reasons so many of us blog. We share, we glean, we learn, we grow - - our perspectives shift as we read about and share in the lives of others. In the same way that my friends view our lives, I gain new perspective each day by following the lives of the Nelson Family. They are unmet friends in CHARGE and their daughter, Moriah (who has had a place in our blog sidebar for quite some time now), has been in the hospital for ten months. What the three of them have been through during this time is unfathomable. Yet, through it all, they've shown unwavering faith and have handled themselves with the utmost grace. They are amazing people... amazing parents... and they have a beautiful daughter who is such a sweetheart and clearly a fighter.

While we've weathered a lot with Gracie, what Moriah and her parents have endured is unimaginable, even to us. Through their experiences (that they so openly and honestly share with the blogger world), they've taught us and continue to teach us so much about courage, faith, love, what matters and what doesn't. They give us and teach us perspective daily.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Moriah's medical issues continue to stump the doctors and her condition has taken yet another downturn. Whether you pray, send positive thoughts or meditate... please direct some of this energy to the Nelson family.

Chronic

Chronic... it's the word that reverberates in my head. I can hear it over and over - - much like it's skipping on my old white record player with the penny taped on the needle arm. No matter how hard I try to stop it, it won't stop repeating. When I close my eyes, I can see the word in print. I've read it in countless articles, written it down time and again in notes and have even used it here on the blog a time or two. It is a word - - the word - - that is used to describe so many of Gracie's medical conditions... Chronic Gastritis, Chronically Ill, Chronic Migraines, Chronic Middle Ear Pathology (ear infections), Chronic Pain and last Wednesday, a new one - - Chronic Lung Disease.

I was not, in any way, prepared for the later. I still am coming to grips with Chronic Pain - - that one makes me cry on a regular basis... having only recently come to terms with the fact that Gracie's pain is, indeed, chronic. While I've known that in the back of my mind, it's an entirely different thing to actually use that word and truly comprehend the meaning. Despite the effort I will make until I breathe my last breath, her pain will likely never go away. She copes remarkably well with all that she endures - - I am quite certain that if I were in her shoes, I would not.

There are several well-written and informative articles about pain in CHARGE Syndrome. Some of them can be found in two previous issues of CHARGE Accounts - - Spring 2007 and Summer 2007. Considering we've discussed this topic at length with professionals over the years and the fact that I read those articles when they were published two years ago (more than once), one would think that I'd have already come to grips with the idea as it applies to Gracie. But, when it comes to pain and your child, there's not a lot of room for acceptance.

Then, on the ninth, during Gracie's (ridiculously long) pulmonary clinic appointment, the word was presented again. Perhaps I was easily rattled because we had pulled into the parking garage at the hospital at 2:15 and the nurse practitioner didn't come into the room until well after 5:00. Perhaps it was because when the doctor finally came in (a colleague of our regular doctor), I was freezing from sitting in the over-air conditioned room (Gracie liked it, though), had been trying to keep Gracie occupied and happy for hours (she actually coped with the wait better than I did) and had to use the restroom for over an hour. Perhaps it was because I just thought we were there to have a check-up, get some paperwork signed for school and discuss a few "housekeeping" items. I am not sure it was any of these things or a combination of all of them... but I didn't handle the information well. It was a good thing that the nurse practitioner was in the room the while the doctor was and that she wrote down everything for me... because I missed half of the conversation - - a fact I discovered upon reviewing the notes with the nurse.

While Gracie is not formally diagnosed with Chronic Lung Disease, the doctor feels we have to treat her as having it. (Whatever that means... if it's serious enough to treat her for it, then it might as well be a formal diagnosis). She has primary aspiration - - which means that she aspirates her own saliva - - (as opposed to secondary aspiration which is refluxing, then aspirating). This is not news, of course. In spite of being trached, she continues to micro-aspirate her saliva into her lungs. For over two years, we have treated her with an inhaled antibiotic (a month on, a month off) to ward off the many trach "bugs" that are so common (and that seem to be very attracted to Gracie). Over the past several months, though, I have noticed that on the off months, she is getting more and more symptomatic of the bugs long before the medication is scheduled to restart. I shared this with the team last Wednesday. The consensus is that Gracie isn't developing a resistance to the med, rather she is not getting her lower lobes cleared out enough and is, therefore, harboring that bacteria all the time. The antibiotic, the (extremely proactive) doctor feels, is only masking the symptoms and the continuous micro-aspiration is doing permanent damage to her lungs.

As a result, she's prescribing a new medication regimen and CPT (Chest Physiotherapy - which is vigorous percussion of the chest wall). On months that she's on the antibiotic (which she believes will be through the spring months) she will have a total of six breathing treatments a day. The regimen is: Xopenex (to open her lungs) via nebulizer, followed by CPT (about 20-25 minutes), thorough suctioning to clear out all mucous brought up with the CPT, followed by Pulmicort via the nebulizer and then, finally, the antibiotic med via the nebulizer. Twice a day.

This is a lot... and I am not complaining because I will do whatever needs to be done... though I am really concerned with the amount of time this will take (Gracie's already getting a total of an hour of treatments a day). On the months that she's on the antibiotic, with the new plan, it will now take well over an hour. Twice a day. This on top of school, feedings, therapy, FUN... etc. Luckily, she loves her nebulizer and the CPT. But so far, she's not overjoyed about that hour and fifteen minute stretch at a time. We've tried it... and I absolutely have to give her a break. This is not the optimal way to deliver these meds or the therapy... there is a method to the doctor's madness. But, we also have to live in the real world. For the first few days I was emotional and angry about the whole thing. I had left that office feeling like I was going to be harming my daughter if I wasn't able to fully comply, yet also harming her if I force the full-length treatments twice a day. What I've come to realize, though, is that there are going to be days that I can't get all of it in... that I have to skip a med or a little of the CPT. We have to live in the real world... and we have to live.

And that brings me to the better part of this post... the "Other Chronics" in our lives! For instance, Chronically Amazed and Chronically Surprised!

On Saturday, my very intuitive daughter somehow knew that Mommy was in need of a pick-me-up and during the day's first very lengthy set of breathing treatments and CPT, she started pushing herself into a sit... all by herself... over and OVER!!! She pushed up on all fours, walked her hands up to her knees and pushed back into a sit. She then corrected her positioning, sat there very pleased with her achievement, got herself down and did it all again... at least thirty times! And she has done it many times every single day since!


Then, that night, she cruised from one thing to another for the first time...


And then, as a sweet reward while Preston napped on Sunday, Mommy gave her a well deserved, very luxurious pedicure... complete with a warm-lotion leg and foot massage!


The photo quality isn't great... these were all taken with my cell phone and the lighting was terrible. But they are actual moments captured - - the moments that made me refocus from last Wednesday's appointment and concentrate on all of the Good Chronic in our lives.

Foto Friday vol. 25

I said a couple of months ago that I would post some more of our favorite photos from the shoot Catherine did for us in June. There are so many that we love... so many... that it's truly hard to narrow it down! Here are a handful that bring us such joy.

Water Wheel

Gracie has made-up a new game to play in the bathtub - - a new game with a toy that has been in her tub for years... long before Preston was born! She did this over a month ago for the first time and I haven't seen her do it since... until Friday night. For every bath since then, she has played it. It's not something I encouraged, as I just wanted to wait and see if she'd do it again.

The Game: She removes the top part of the toy (the water reservoir), takes her index finger and spins the water wheel really hard and then stops it. Whatever color is on top, she quickly signs it and then spins again.

She will do this for about 10 minutes. I never interrupt - - only quietly watch in utter fascination. Interestingly enough, the water wheel is the only toy that she doesn't throw out of the tub! All of the others that float around her feet and where she can splash with her hands must be discarded... an obsession she's had for a very long time. Since her "toy removal" regimen is such a good core strength builder, I don't discourage her need to toss everything over the side! She picks most items up with her toes (her big toes work much like opposable thumbs!) and does a toe-toucher sit-up to grab the item with her hands and then does a lateral half sit-up to throw it over the side.
(I am ashamed to say that I DO NOT bear the core strength to imitate this series of maneuvers! She may lack balance and strength in many areas, but she has abs of steel!)

Backyard OT with Mommy (part 3)

We were at it again! This time with paint - - multiple colors - - and the kids used fingers, brushes, sponges... whatever they chose! First and foremost, this was fun. Lots of fun! Folded into all of that fun and tactile work were all kinds of learning opportunities. Disguised lessons - - my favorite way to work with and teach my kids.

We talked (and signed, of course) about the colors, the shapes of the sponges, the way the paint felt, the way the brushes felt, mixing colors and what each combination made (all the way until the combination was a murky brown!).

When they were finished, we inspected their colorful hands. Gracie was fascinated by hers - - staring at them for several minutes. They are pictured below... a work of art all their own.


When it was time to clean the sponges and brushes, we used a bowl of warm water. Thus, we talked about the water - - the color after we rinsed their tools, etc. Then we dumped the bowl and added more warm water to wash off their hands. We added ice and talked about it being cold.


We poured it out (actually, Gracie dumped it!) and we talked about where the water went (see Gracie looking through the bowl) and then how the bowl became a hat for her.


Then we laid the masterpieces out to dry on the lawn... here are a couple of them.
Never once did they realize how much "mommy school" was happening the whole time we painted and played!

Foto Friday vol. 24 - Shop Vac

These were taken through our back windows - - which is why there is a reflection in them. I didn't want to interrupt their fun and knew that if I walked outside with the camera, I would have altered the dynamics!