LONG Catch-Up: Potty Patrol, Birthday Boy, Humbled Thumbs, IEP, Outpatient Surgery

So it's been a while since I've posted... three words: busy, madness, exhausted!
I had been letting myself feel guilty about not posting on our blog, but since it's my blog and our life dictates how I spend my time, I decided to let that piece of guilt go! I did, however, miss so much that was going on with my blogger friends and 'family' - - some of it not so good and some of it so joyous and wonderful - - and am definitely feeling guilty about that.

Besides being a way for me to "journal" our life and keep a virtual scrapbook, my blogger network has become a wonderful support system and lifeline. Thanks to everyone who emailed, texted and called to check on the Flock... your concern is so sweet and really touched our hearts.

Now... on to business! I last posted on Preston's birthday... nearly three weeks ago. The day before his birthday was a pretty dramatic and somewhat traumatic day...

Potty Drama

I took Gracie to school, ran some errands with Preston, took him to "TOTnastics," came home to pick up a few things and meet the nurse that we have on Fridays (we only have nursing on Fridays...). Our plan had been to go pick Gracie up and head over to a regional park that we've yet to explore. When I unlocked the door, I immediately knew that Sophie (our beloved dog) had been naughty. I typically don't leave her in the house during the day, but there were people coming to look at some work that the landlords were having done and I didn't want her to be in the backyard. Anyway, I could smell the problem before I actually saw it. I'll just say this... when I walked into Gracie's room I literally screamed. Nicole, Gracie's nurse, thought I'd lost my mind. Then she saw it, too... the very light colored carpet in my sweet daughter's room looked more like a leopard print and smelled like a sewage plant. Get the picture? It was obvious she hadn't really been naughty... she was super sick... and it was horrendous. HORRENDOUS.

Needless to say, the park plans were scrapped and the moment we got back to the house after picking Gracie up, I started calling carpet cleaning companies to see who could come out on a Friday afternoon. Preston, thankfully, had fallen asleep in the car and once in his room, was oblivious to the whole situation for a couple of hours. Nicole kept Gracie busy while I spent two hours in her room trying to get a jumpstart on the massive clean-up. I found a company that could come out, but not knowing what time they'd actually arrive, I just couldn't let it all sit.

Since the whole house was due for a cleaning, I took the opportunity to have it all done in one shot. That turned out to be a huge mistake. Our old house had mostly hardwood, but I had the carpeted areas cleaned often and knew what to expect in the way of drying time. This company told me the same things... safe to walk on immediately, completely dry within four hours. Um... not so much. Not even dry 40 hours later. It was a fiasco. Imagine my daughter trying to scoot around on wet carpets... she is a little (a lot) compulsive about things, too... so keeping her on a Neat Sheet was out of the question... she wanted to check out the carpet. And if she laid on it for thirty seconds, I could literally wring out her clothes. She wouldn't sit in any of her chairs once she knew the floor was wet. Ugh. Despite my complaints and threats to cancel payment, the company wouldn't come back out to try and get out the excess water. Nor did they ever call me back on Saturday as I was promised. Meanwhile, I was stuck with sopping wet floors. We were up so late... we used our shop vac to try and suck up water, John went to the grocery store and rented a Rug Doctor, we had all the windows open and fans blowing... it was a wet mess.

Back to Sophie... poor doggie. She's our "firstborn" and we were quite concerned... it was a lot of diarrhea... A LOT. Something was obviously very wrong. The only thing that gave us a bit of comfort was that she still wanted to eat and drink. This, however, was not good for me. That meant she got sick... over and over. I spent the next SIX nights with her sleeping in the kitchen and me "sleeping" on the couch (in between running back and forth to suction Gracie) so I could let her out every 45 minutes. ARE YOU KIDDING ME? THAT is dog love. (She's 12 years old... it's too cold for her old joints to sleep outside and regardless of the temperature, she's always slept inside... outside at night would certainly have caused neighborhood disturbance in the way of howling or barking.) If I didn't hear her quiet pleas in the wee hours of the night (which at one point every night for six nights, I didn't) then she'd go all over my kitchen. I spent every morning for six mornings mopping, scrubbing grout and disinfecting my kitchen floor. Every morning... for six mornings. Because of the bout with doggie dysentery, I couldn't let the kids in the backyard... there's no way to protect them from that mess. And as luck would have it, this started on day three of John's 8-day stretch at work. So, I couldn't even get her into the vet with both kids in tow, it was impossible. Because she was eating and drinking, we decided to wait it out and hope that she had a bug of some sort. Those first few days, though, we were incredibly worried and even had to start having "the talk" about how much is too much for her to go through. Thankfully, she is fully recovered. But that was just the start of our potty drama...

Gracie has some "habits" that are a little less than ladylike... and one of them is to strip naked at the drop of a hat when she is ready for a bath. Thankfully, she only does this at home because she knows that is where bathtime occurs. Thank goodness for small favors! It doesn't matter what the time of day is... if she feels that it's bathtime, then she will get naked. You can put her clothes back on and tell her "no" but she will cry and kick and fight... and take them off again. (She also strips naked in the morning if she's awake for more than a minute or two... to0 long for Princess Gracie to be waiting to get dressed!) Inevitably, the moment she's naked, she feels the need to "go." I don't know if it's the fresh air hitting her nether region that gives her the urge, or if it's intentional. It's never much, so I'd like to think it's not intentional, but any amount is too much to have to deal with when she's begging for a bath and Preston is thinking it's pretty funny that she's naked and decides to strip his diaper off and go, too.

I've pretty much curbed his behavior. He gets that his sister does things that he's not supposed to do. He knows that what she's doing is naughty and I think he even understands the fact that his naughty behavior has far different consequences than hers. Nevertheless, this all started in the days that Sophie was in the midst of her illness and I was at my wits end. It was not pretty... on so many levels! For six days, no matter how much I scrubbed my house or myself, I never felt clean. As Preston would say, "Ewww, yuck!"

Birthday Boy

Despite the fact that our house was quite soggy and the backyard was off limits, my little man managed to have a very fun 2nd birthday. He helped me make his cake... he poured, mixed, tasted cake batter even though I told him it wasn't yummy until it's baked, did dishes, licked spatulas, licked the beaters, shared with his sister, ate way too much frosting and loved every minute of it.

Humbled Thumbs

A reason that I've been unreachable by cell phone and text is that we got new cell phones - - touch screen Blackberrys - - and while the whole idea of them is very cool, using them has not been, at least not for me. Turns out my previously speedy thumbs are now useless - - they are too chubby for the keyboard and I keep hitting the wrong keys. I never really thought my thumb tips were all that fat, so this has been quite humbling for my opposable digits! For a good ten days I played with that stupid phone trying to get the hang of it, all the while typing a total mess of a text message and not making any sense. One sentence was taking me five minutes. We got them because John's phone went kaput and the Blackberrys are buy one get one free right now. We are (or at least he is) trying to bring me out of the dark ages. I still carry a very fat, overloaded daytimer that holds so much important information that I am convinced the earth would literally stop rotating if I were to lose it. It weighs down my purse and takes up way too much room... but I haven't been able to part with it. So far, like with the palm pilot and other "toys" I've tried over the years, I have not yet been converted. To add insult to injury, neither of our phones are connecting to any of our bluetooth devices. I have a Jabra in the car... which I LOVE... but it's been sitting on my visor, so sad and neglected! Clearly, the issue is not with our phones or the devices, it's all operator error. We just haven't had the time to solve the problem. Grrr.

IEP

As for Miss Gracie - - things in her world have been very busy. We had her IEP on Wednesday of last week. Thankfully, my mom came down to give us a hand so that John could attend with me this time. She was also here to help us on Thursday because Gracie had outpatient surgery and procedures at the hospital and we both really wanted to be there.

So... the IEP - - Nana to the rescue. Turned out that John, while he did get the day off, had court for a ticket he'd issued and couldn't attend the meeting... not really a day off. Just our luck. It went well... her services won't change from what was established in the initial IEP 30 days ago, but for the assessment and recommendation that's pending from the Adaptive PE Coach. Her goals have been completely re-written and while I feel that the goals themselves are good, I am still waiting to talk to her teacher a bit more for some clarification on measurements of success and for correction to the document itself regarding present levels. I will explain more about this once I am able to have a conversation with her teacher. I can't mention the IEP without shouting a very public, loud and heartfelt "Thank You" to Leslie, Katie's mom, for providing me with so much valuable and helpful information from Katie's IEPs and evaluations. Gracie and Katie are so similar - - CHARGE Sisters, if you will - - and Leslie's willingness to share information has been of phenomenal help to me. Thank you! :-)

Outpatient Surgery

Is it terrible to say that it wasn't a big deal in the world of Gracie and surgeries? That is not to say that anesthesia isn't scary and that the discomfort and loopiness she experienced wasn't a big deal... it was, of course. But as far as "hospital time" goes, this was the way to do it. In at 5am, out by 9ish. She had a bronchoscopy, an endoscopy with biopsy and a new set of tubes in her ears.

It was really strange to not know a soul at the hospital, to not know where we were once inside, not know the routine. Quite unsettling for two very "hospital seasoned" parents. Thankfully, Gracie was happy as a clam the entire time we waited in the ambulatory care unit. She hung out, watched some Disney Channel, signed her ABC's and then smiled as they wheeled her into the OR. She wasn't so thrilled when she woke-up... rightfully so. But, once back in the car, she was loopy, but happy.

The day was mixed... good and bad results. The bad was not a surprise, just confirmation to the doctors that I am not crazy and that what I have been telling them about her (because some doctors STILL haven't gotten records down here... unacceptable) is, in fact, the reality.

The ENT did her tubes and the bronchoscopy. The bronch showed (by our estimation in comparing our photos of previous bronchs) a fairly happy airway - - the least red we've ever seen, actually. This is excellent news. There are structural anomalies, some that are quite interesting, but none that are compromising her airway and none that require surgical intervention - - aside from the granulation tissue he removed during the bronch. It's a beautiful airway that would work perfectly without the trach... but for the fact that she doesn't swallow at all.

There is a picture from the procedure that is looking down at her carina (the top of the area that "bridges" where the lungs start) and sitting on top of the carina and rolling into her lungs was a giant pool of bubbly saliva. Without the trach, Gracie would drown. Period. If we can't rehab her swallow enough to manage her secretions, she'll never get it out. Not surprising news... not new news, but still so sobering each time it's said.

As for the tubes in her ears... this one was up for debate until the day of surgery. We wavered back and forth because the tubes make Gracie crazy. Her left ear drains constantly and the feeling makes her so irritable. She's so "open" structurally on that side that her saliva actually drains out her left ear... thus it's no wonder that without tubes in her ears, she constantly has fluid in them. We had the ENT put in temporary tubes thinking that if it is too unbearable for her, we will have to take them out or hope they come out on there own quickly. We wavered also because of the fact that she's consistently testing with a profound loss in both ears now. Behaviorally, we haven't seen much response to sound in a while and when we do, it's to things that are incredibly loud or could be things she's feeling rather than hearing. The tubes are there to protect her eardrums from damage... but if she's deaf, what are we really protecting? Constant ear infections haven't plagued her... constant fluid has, though. It's a true catch 22... and we chose (since she was going under no matter what) to give it one more "go round" with the tubes. The (very) unfortunate thing regarding the tubes is that because of the drainage issue, Gracie can't tolerate her BTEs (Behind the Ear Hearing Aids). We've been trying to get her to wear these instead of her BC (Bone Conduction aid) as they provide more appropriate amplification, but it's been a struggle. If she'd have taken to those aids and seemed to be getting any benefit, then we'd have skipped the tubes altogether. It's just unfortunate that we can't really work on wearing those aids now.

The endoscopy was the thing we were most concerned about... the GI team needs to get a good picture of the status of her "gut" and they did. Hearing me talk about her gastritis and her profoundly negative reactions to feedings didn't really sink in until the new GI doc got a look-see for herself. Like her airway, her tummy was not as horribly red as it's been in the past. That's not to say that it wasn't red and bleeding - - it was. But it actually looked better... until she showed us the rest of the pictures. She blew a little air onto the surface of her stomach lining, went in further to get more views and when the camera came back to the stomach, it was horribly raw and bleeding... just from the air. Thus, you can only imagine what formula and meds do to it.

She spent several minutes going over everything with us and then discussing the things we've attempted in the past. I confessed that I'd been skipping her Prevacid because she seems to be uncomfortable when she gets it... it's like the little granules irritate her very raw stomach. She agreed with me and formally discontinued it. We added Nortriptlyne to Gracie's long list of daily meds in the hopes that it would help block out the pain she associates with feeds. So far, we've not noticed a big difference. We'll be patient. If by the weekend, we've not noticed a change, we are supposed to increase to twice a day. If that doesn't work, then she wrote for another medication to be added. If that doesn't work, we will go back to the G-J tube (bypassing her stomach entirely by feeding directly into her jejunum). She's had that tube before, it wasn't any better, really. And, while we're not keen on pumping her full of meds and making her groggy or foggy, we don't have much choice in the matter... she has to eat... she has to gain weight and be able to keep it on. Period. "Failure to thrive" doesn't begin to define how dire this situation continues to be for her.

The good news is that despite being rail thin, having a raw tummy and a drainy left ear, Gracie continues to get more comfortable at school. She looks forward to getting there and the minute I get her out of the car and into her KidKart (adaptive wheelchair/stroller), she is ready to leave me and get inside! I love that! Next week, we bump her days at school from three days to four! Yay... progress!