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!

Happy 2nd Birthday, Preston!

Happy Birthday, Bubba!

My sweet, busy, insatiably inquisitive boy ~

Today you turn two and that means, regardless of my desire to hold onto your "babyhood," you are officially no longer a baby. The truth is, you reached toddlerhood a long while ago, and in your mind (especially at the playground) you have reached little-boyhood, too. I can't even begin to list your milestones and accomplishments here... there are just too many. Thus, so I don't forget (and so that someday you can look back and know what your little two year-old self was doing, especially compared to your one year-old self), I am recording some highlights.

You have an endless and ever-growing vocabulary and you're quite smart. (I say it not just because I'm your mommy - - it's just a fact). I lost count of your words and signs many months ago... you surely are at well over a thousand now with both languages and it is simply amazing. Granted, some of your words need translation because even though your brain has the capacity to grasp the vocabulary, you're little mouth hasn't quite mastered the motions for pronunciation. Some "funnies" that you've picked up as of late - - "Oh, tute" which is "oh, cute" - - something that I say a lot and apparently, because of that, you easily learned how it's to be used! In the last several days, you have commented on Gracie's sheets, her braids in the morning and a drawing we did together. You also say, "Oh gosh" which really cracks up me and Daddy! If you are running around the house looking for something or someone, you say, "Are you?" while signing, "Where?" You are rather chatty and people are constantly commenting on how much you talk, especially "for a boy." I think you come by it naturally - - you are, after all, my child... and I am wordy! And, the fact that you spend about 95% of your time with me, it's bound to rub off! We chat about everything... what we see, what we hear, what we read, what you learn from your favorite shows.

Speaking of your shows, your current playlist is quite "sophisticated!" You love "Signing Time" (on this one, you don't really have a choice, so it's good that you like it!). You also love "Curious George," "Sid the Science Kid" and any of the Frog/Boy/Dog videos directed by Gary Templeton. (These are silent movies, set to classical music that feature real kids and real animals.) Like Sid, you are very inquisitive and want to learn how things work and how they are put together. Now that Gracie goes to school like Sid, you said just this week, "Bubba go school." We working on it, dude! There aren't many preschools that will allow kiddos as little as you! Anytime you watch TV, you love talking about all the things that are happening. You're favorite thing to watch on the laptop (besides slideshows of yourself and Gracie) is an Italian video that features rescue dogs being trained to jump from helicopters into the water. It's no wonder you love this... it has water, dogs, helicopters and adventure! Games on PBSkids.org and Sesamestreet.com are fun for you and you also love several of Gracie's school games and learning software.

You've been drinking from a real cup for a while now, although I still give you a sippy cup most of the time - - only because I don't trust your urge to be "two" and dump the cup! You love bath time, all things related to your self-care and picking out your clothes! Sports are a huge hit with you and you are naturally very coordinated, just like your daddy. You love hitting off the tee, but even more, you love hitting a slowly pitched ball... and often, can do it! You and daddy recently started hitting tennis balls at the courts and you now have your very own racquet! You haven't yet proven to be left-handed or right... but seem to favor your left and are certainly more coordinated as a south paw at this time.

As busy as you are, you are equally eager to settle down and read... thank goodness! You love books, but unless they are board books, you must be carefully supervised because you've discovered how fun tearing paper is. We read together at least 30 minutes a day and you love reading to your stuffed toys, the dolls and, of course, Gracie. You would read all night and avoid sleep altogether if I let you - - another thing you come by naturally! While it's difficult to list favorites, a current "daily must read" is "The Very Busy Spider." When read together, it is a little sing-song back and forth. You have most of it memorized, so I can stop reading at almost any word and you'll say it for me!

You know you're alphabet - you can say it by voice, sign (although not completely accurate by sign yet, you do recognize all letters that are signed to you) and you recognize all capital letters no matter where we are! Street signs, stores, the sides of trucks and buses... it doesn't matter where we are, you "read" me the letters. We are now working on lower case letters! You have counted to fourteen independently, you try to sign when counting, but again, your fine motor hasn't caught up to your brain! The difference between now and a couple of months ago, though, is remarkable and you've become quite obsessed when trying to sign, asking for help and sticking up your hands! You just mastered "I love you" with your left hand - - this made mommy, daddy and Gracie very happy! Gracie now signs it back to you when you "say" it because you are signing to her... which we love seeing!

You are a little sponge, thirsty for more from the moment you wake until you finally rest your head again at night. You fight naptime, I am sure, because you are afraid you will miss something. (Mommy really wishes you'd not fight so hard! She needs to recuperate a bit during the day, too, get some things done and regroup just to keep up with you!) It's a joy to sit back and watch you, Preston... the way you observe, solve problems, role play... it's miraculous, so seemingly effortless. You have impressive manners, often remembering to thank daddy and me when we give you food or refill your cup. You say please, bless you (beesh you) when we sneeze and "cuze me" when you burp or toot! (You also laugh hysterically at the later!)

You relish in making your sister laugh or smile. You always offer unsolicited hugs and kisses, and never go to bed without saying goodnight, giving a kiss and saying "I love you." Like your sister, you have an amazing capacity to love and are eager to share your affection. And then, amidst all this great loving, play and discovery, you hit or kick something or someone... and I am reminded that you are, indeed, TWO!

Happy Birthday, Bubba! I love you with all my heart and am so proud of you!

Mommy

Foto Friday vol. 13 - Some things Bubba

Monkey see, Monkey do!

Nana sent this "Baby George" (as he now calls it) to Preston because she thought he'd "like to watch Curious George with a friend." Turns out, he has a friend to do a whole lot of stuff with!

This is Gracie's "Slime" that she (unknowingly!) shared with Preston. Since he wasn't a fan of "mushing the bag" for the Amish Friendship Bread a few weeks ago (he has since squished other bags), I've been working with him to explore various textures. He had a blast playing with the Slime... and is officially over slimy, squishy things!


On Sunday, Preston and I attended Reuben's 2nd birthday party. It was a lovely afternoon in the Southern California spring sunshine. After enjoying more than his fair share of strawberries, having his face painted (He chose "happy faces" on each cheek - Thanks, Kristina!) and the much anticipated birthday song and cupcake, he was absolutely exhausted! This is what he looked like before we ever hit the freeway!

Homework

 

Monday was Gracie's first day back at school after being sick and her first day attending without me. Sigh.

Yes... this is what we have worked for, hoped for and waited for, but when it came time to pull into the drop-off parking lot at her new school, I had to tell myself not to keep driving! It's not that I wasn't excited for her - - there's just something a little unsettling about dropping her off, watching them wheel her down the hall and knowing that the next time I see her, I will not have a clue about what happened, but for what they tell me. Her health aid and the school nurse met us at the "drop-off" spot. We got Gracie settled in her chair, chatted a bit and then... off they went... down the hall toward her classroom as I pulled out of the parking lot.

Three hours later, I waited in the same lot for them to bring her back to me. They shared what happened during her day - - what she enjoyed, what made her mad (and what they learned about her from it!) and let me know all of the team members who worked with her. They said that it seemed at one point she realized I wasn't actually there lurking in the wings. I am not sure if that's really true or them being kind and trying to appease my aching "mama heart," but in any case, I appreciated the comment.

When we got home, Preston was so relieved to see her. (He had stayed with John in the morning when I dropped her off and was a little distraught for about ten minutes when I returned without her. He cried and called her name over and over. It was sweet - - but John and I were glad when he moved on to shooting baskets in the backyard!) I unpacked her backpack and in her communication book (the notebook that will be passed back and forth between me and her team), I found her homework... her very first homework!

We completed it this evening. On Monday and Tuesday evening, I had worked on other activities with her that I had hoped would make the homework more "familiar," but she didn't seem impressed with any of it, so it took a lot of hand-under-hand and hand-over-hand help to get this done... but we did it!

 

Here Fishy, Fishy

On Tuesday afternoon, the Flock spent time with schools... of fish.
We took the kids to the Long Beach Aquarium and they, especially Gracie, had a ball!

We had intended to take them for Preston's birthday (which is Saturday), but since John starts an eight-day stretch at work on Wednesday, it wasn't going to work out. Then, as it turns out, Gracie's class was scheduled for a field trip to the aquarium on Wednesday, but because I can't take Preston with us, she won't be able to go. So, we combined it all and had our own field trip and pre-birthday celebration on Cinco de Mayo!


Gracie not only enjoyed it... she loved it! It's nice and dark in there, so for our incredibly light-sensitive girl, there couldn't have been a better outing! The most exciting part of the trip was how much she signed unprompted... fish, water, jellyfish, lobster, light... plus much more after prompting. She also floored me by recognizing fish I'd named for her when we passed by a second time.


Preston enjoyed it, but not as much as his sister. He's not a big fan of the dark or really loud noises, so when the main area became dark and the booming voice came over the sound system talking about whales, he said, "All done... bye fish." We had to talk him into staying! Like his sister, he was eager to tell us all that he knew. He recognized so many fish before we even told him what they were - - starfish, jellyfish, octopus, crab, lobster, seal... it was unreal to listen to him and watch him sign.


My favorite part of the visit was when John held Gracie up to the window and they watched the otters play. One otter, in particular, seemed to perform just for Gracie. He would speed past the window and then come down to where she was and literally stop, "clap" a bit, turn, twist, put his nose right to hers, and then speed away, only to loop around and "play" with her again. She loved every bit of it... and it was such a joy watching her take it all in.

Foto Friday vol. 12 (Making it's comeback after a hiatus!)

Daddy and his girl on her birthday... taken during the early evening when she "rallied" for a bit during her horrible, three-day allergy/sinus headache.

Preston helping Daddy wash the car...
Preston helping wash Daddy!

Gracie's new hearing aid molds... a darling mix of pink, purple and clear swirls. She has yet to tolerate wearing them for more than ten minutes and really prefers her bone conduction aid (ten minutes is the longest she's worn this type of aid in over three years - so that's progress!). As usual, she is eager to wear anything for a photo op, though! Jury is out on how much either is really able to help her. That's another story for another post...

Easter Baskets with Nana! So much fun!

Preston has gotten into role-playing with all of the dolls and stuffed animals in the house! It's too cute! He had a lunch date on Wednesday with his stuffed leopard named, Meow, and his "big monkey" named, Max. He sat each of them in a chair and I had to serve goldfish crackers to all three of them!

Second 1st day of Kindergarten; 1st sick day

The "Flock" has been busier than normal and I've been too tired to put together a coherent sentence, thus the lack of updates... still too tired, but feel the need to get this done or I'll never catch up.

I'll start with the good news - - Miss Gracie started school (as scheduled) a week ago today and had a fantastic day. She was (as she was in August) a rock star and handled the adjustment to a new place and new people like it had never been an issue for her!

Here are pics of her in the parking lot as I got ready to wheel her onto campus... she was so excited! (See her tongue peeking through her gap on the bottom...? Well, there is now a permanent tooth poking through her gums! BIG girl!)

She wore the same shirt that she wore on her true "1st day of Kindergarten" - - I guess you can say I am a bit superstitious! I figured that she had such a great day back in August, why not try the same shirt?! (This coming from the person who wore the same pair of jeans for every final during college. By the time I graduated, they were very well worn and had all kinds of natural rips and tears! I finally parted with them a few years a go when I realized that I didn't need to keep them - - whether I ever go back to school and take more finals, they will never fit me again!)


I think she adjusted better than I did! I stayed with her Wednesday, Thursday and on Monday to help field questions and give her new team input about all things Gracie. My purpose was to be "wallpaper" to Gracie, but observe and offer any help to her new team. She is only attending for three hours, but when we got in the car each day, I was pooped! I think I was carrying a lot of anxiety each day, hoping that she'd "show her stuff" and communicate a bit. The kids in her class are far more academically advanced than she is - - they've also been in school much longer. Nevertheless, I was feeling so much pressure for her to prove her worthiness of being in that classroom. She's so smart... but that's not obvious to anyone who is just meeting her. The pressure I was feeling was mostly self-inflicted... so it's my own fault. I am so worried that, because of her health over the years, she's missed the formative time to become a learner in the academic sense. We've done everything we could when her health has permitted, but it doesn't stop me from constantly questioning if we could have done more. That's just part of being a parent, I know... regardless of your child's health and abilities... but those feelings were very present those first days in class.


There are other kids with CHARGE in her class and in the preschool class next door. Gracie's health and development is so much more severely impacted than theirs, and though I wasn't really comparing or wishing she was different, I was sad for her. Sad for the struggles that she has faced, faces now and will always face. She does it with such happiness and grace, if you will - - so eager to learn and do new things in spite of how challenging it is - - blissfully unaware of how much easier it could be because she doesn't know any different. And yet there I was, a slight, blubbering mess (on the inside... no one at school would have known) trying to take it all in and just be happy for her that she's finally getting this opportunity that she needs and deserves.


And then, just like that, my glimpse of happiness turns again to sadness and disappointment because she is now sick... again. This Monday was so busy - - school, then cardiology, and since we didn't have time to make it all the way home, a quick trip to the mall to pick up her new tennis shoes (for those of you who know her "shoe issue," you know that tennis shoes - - and the fact that she wears them now - - are miraculous!) and finally off to an hour of OT and PT. She was such a trooper... happy and smiling. Therapy was too much for her, though, as she was exhausted by then. But she didn't get mad or cry, she just couldn't muster the energy for the work they were requiring. We had left the house at 8:00am and didn't return until 5:40pm.

She didn't sleep well that night and woke-up Tuesday with a low-grade fever. It subsided and she perked up. By evening, she was back up to 102 without Tylenol. She was up all night Tuesday coughing and did not tolerate her feeding or Pedialyte. So... today was her first sick day.

I made the calls this morning, trying not to be too devastated for her, but my heart was so heavy on Tuesday knowing that she so easily picked up something. It's normal for any child starting school or daycare to get sick... I know this... but I had (silently and secretly) hoped that for once, she could catch a break. She's going to miss tomorrow, too, given the way her secretions look. A chat with the pulmonology nurse has resulted in a prescription for Cipro... the "knock-down, drag-out" of antibiotics. This "ick" that she's been dealing with is recurrent and appears to be coming out with a vengeance each time she ends her regular cycle of inhaled antibiotics. All of this is, I'm sad to say, just another reminder of how fragile her health is... how vulnerable she is... regardless of that sweet smile on her face.

Finally... a birthday celebration!

Last Thursday night, with Nana still here to join in the fun, we finally were able to celebrate Gracie's birthday!
It certainly wasn't a traditional party, but it was great fun all the same! She had requested demanded her bath (as she does each evening) about 30 minutes after we returned home from therapy, so she "partied" in her pj's! She'd had a busy day - - it was her second day of school and in the afternoon she had OT and PT.

We ate pizza for dinner, there were big balloons, a birthday cake and she opened presents. Such a lucky girl - - she received several gifts - - and while I can't show pics and mention everything, it is all very much appreciated!


"NPO" (no food by mouth, per doctor's orders due to her non-existent swallow) has never tasted so good!
You have to let her live a little... just a taste... frosting is so yummy!


The Claytons sent Gracie this adorable outfit! Christopher is one of Gracie's friends in CHARGE and is one year and three days older - - her "older man," we joke! It was so sweet of Kim and Christopher (and all the Claytons!) to think of Miss Gracie on her special day! We are so lucky to have "met" you through our community of CHARGE families and blogger network!


Gracie's Uncle and Auntie (and her new cousin, Jack) sent her a super cute Hello Kitty card with a whole page of nail stickers! These are a huge hit with her!

The big finale of the evening was playing the dvd that Gracie's old class made for her. I wish I could post it here, but won't without permission of all who participated. Picture this... a big birthday banner with Gracie's picture on it. Standing in front of it are her former teacher, two aids, the OT and in front of them are all the kids in her class. Her teacher said a few words (that left me bawling... the whole gesture had me bawling) and then they signed and sang "Happy Birthday." It was beautiful - - so kind, so thoughtful, so incredibly special.

Preston was so excited for his sister's birthday and has mastered saying, "Happy Birthday!" (He signs it, too... but this is not mastered... and unless you are familiar with the ASL approximations of a two year-old, you won't know what he's signing!) He has also mastered other birthday related signs - - most importantly, "cake." And, as clearly documented in the photos, he has mastered eating cake, too!

Gracie on the mend and Nana knows best

Apparently I should have posted about Gracie's illness a lot sooner, because "calling her out" about it on this blog seemed to do the trick!

Thanks to everyone for all your well wishes... we truly appreciate it. It's been so hard to see her so sick and listless - - we've missed her so much over the last several days.

Nana had been saying since arriving, "She looks like she has allergies... or a terrible sinus-induced migraine." While we agreed with the migraine part (we've seen this countless times with her), we weren't sold on the allergy part. She hadn't been sneezing and she didn't really scratch at her nose or eyes much (except for Wednesday - - the horribly windy day). She's been comprehensively tested twice with no major allergies (although I know it can change at any time). I figured if it was allergy related, it would have subsided by Friday and thought the fact that she'd been closed up in a dark room with the humidifier running non-stop should have helped and it didn't.

Late Saturday night, I gave her Benadryl, hoping that if it were allergy-related (like Nana thought), she'd get some relief and maybe a bit more rest. She spent the better part of the night with her head hanging off the bed, despite my repeated efforts to move her back. She seemed to be much more comfortable with the pressure in her head if she was "upside down" and when I finally decided to leave her alone, she rested a bit more comfortably... another indicator that she was suffering from serious sinus pressure. (Her bed is on the floor without a box-spring, so she's not in any danger! It's like this so that she has the freedom to get in and out of bed on her own.)

She woke up Sunday morning with her right eye swollen shut... and I mean shut. She'd been puffy-eyed for a couple of days, but today her left eye was normal and her right eye looked horrible. However, she immediately stripped herself naked (yes... diaper, too) upon waking and waited for me to come change her. While we are working on modifying this behavior, I was thrilled that my girl appeared to be making a comeback! I got her dressed, washed her face, did her trach care... and then she went back to sleep about a foot from her bed. While she napped, I talked to her opthamologist, explained the last few days and her fabulous "shiner" and she, too, thought it sounded "reactive" - - either sinuses or allergies. She recommended an allergy eye drops and wants me to call her Monday to let her know if her eye looks better.

Around noon Gracie emerged from her room. Her coloring looked a bit better, she wasn't as light sensitive and she was wanting to interact. Soon after, she signed, "shoes" as in, "I want my shoes so we can go somewhere." She continued to improve throughout the day and even joined us on an outing to the grocery store. Being upright in her chair and in the car seemed to help with the swelling in her eye, as did the eye drops. By evening, she was pretty much her sassy self (with the exception of a still-swollen eye and a bit less energy) and was acting as though the last 3+ days hadn't even happened.

Looks like Nurse Nana was right! Hopefully tomorrow we'll finally get to celebrate her birthday. And, it looks like Wednesday will go on as planned afterall!


(Despite how different their symptoms are, Preston is also suffering from allergies. His pediatrician put him on an antibiotic, which didn't do anything but tear up his tummy. I mentioned allergies to him, but he wasn't convinced. Nana was right about Preston, too... another point for Nana! Guess we'll be taking both kids in for allergy testing... something in the air here is not agreeing with them right now.)

Haven't Celebrated Gracie's Birthday...

Despite the fact that April 16th has come and gone, we haven't yet celebrated Miss Gracie's birthday. She is, I am sad to report, not well at all.

She awoke on Thursday, her birthday, grimacing and very teary. Wednesday had been a very busy day of appointments and being that it was also particularly windy that day, I wasn't too surprised that Wednesday night was exceptionally rough for her. But as Thursday wore on, and we still hadn't seen much more than a glimpse of a smile when she'd uncover her sighted eye to let in a split second of light, I knew that something more than a "rough night" was affecting her.

She didn't emerge from her room until the late afternoon and made a pit stop in a dark portion of our hallway, only to fall asleep again for about 45 minutes. Finally, just before 5pm, she begged for a bath and I, of course, obliged. Baths are a favorite and it really seemed to perk her up. We took the obligatory "birth day" photo (in her pajamas, post bath) and then around 8:45pm she was tired and ready to go back to her room. Friday was much the same, though a bit more light sensitive and she waited until after 5pm to leave her room. She perked up a bit upon seeing her Nana (who arrived Friday), but didn't give her the excited, loving reception she normally does.

Today was the worst so far... she didn't leave her room until tonight around 9pm. She finally asked for a bath when she uncovered her (still incredibly light sensitive) eye around 9:30pm and saw the light on in the bathroom. Of course, once again I obliged, giving her the one thing that seems to be bringing a bit of joy to her day. She perked up for a bit, tolerated about half her nebulizer treatment before getting furious and was back in her room falling asleep at 11pm. She didn't want me near her, so I am typing within earshot of her, but not where she can see me. She has been hysterical over any light, teary with any movement not initiated by her (i.e. diaper changes, suctioning, washing her face...) and is "sleeping" very fitfully... only about 45-60 restless minutes at a time and then she wakes up fussy and rocks to try and soothe herself. We are barely keeping her fluids up, but she is hydrated just enough to maintain. She's not tolerating much interference from any of us, but the moment that she has a lapse in whatever it is that's ailing her, she always offers up a little grin and some love... but that's really rare during the last 72 hours and happens only during those brief couple of hours when she rallies in the evening.

It's been a long while since we've seen her like this... and it is heartbreaking. In fact, I can't remember a 3+ day stretch of this magnitude in a long time... over a year for sure. It's not entirely clear what's ailing her - - a resurgence of her debilitating migraines, allergies, her heart... It could be any, all or none of these things. At this point, we've chosen to keep her at home and not head to the hospital. Her doctors here don't know us or her well enough to chat about her over the phone and pre-admit her. (It's in these situations that we miss most of her former medical team - - if we called about her needing to be admitted, we never had to wait in the ER.) Thus, when we take her in, it will mean hours in the ER trying to explain exactly why we brought her in and "she's miserable" isn't usually compelling enough to get you from the ER triage into a room. Her lungs are clear, she doesn't have a fever, her pacemaker isn't failing... and we have the equipment and knowledge to monitor and care for her at home... which is far better than the hospital. If, however, she's not markedly better by tomorrow afternoon, then we are taking her in.

It breaks our hearts to see her like this. There are so many ups and downs in her world - - and it seems that just when there are lots of wonderful "ups," she's blossoming and we make plans, things come crashing down and we are reminded how truly fragile her health is. Her first day of school is supposed to be Wednesday - - five months and one day from her last day of school when we moved. I am still hopeful (though realistic, too) that she will somehow be recovered and ready by then... she needs this, she deserves this, and up until Wednesday night, she was ready for this.