Foto Friday 2, vol. 5 - Creations by my Cupids...

... with a little help from Mommy :-)
(And, yes... I cheated... I am posting Foto Friday on Saturday!)

Since last weekend, we spent a little bit of time each day working on Valentines for friends, teachers, teachers' assistants and aides. I am not creative in any way, but show me an idea and I can copy it!!! So, thanks to Mighty Max and Amy, the idea for friends was firmly cemented when Amy posted their Valentine project last year. (Thanks, guys! We had lots of fun copying your idea! :-)) With a little Internet surfing, we found our other two projects and set about copying those, too!

Everything was really easy... and since I have tons of scrapbooking supplies, I didn't have to buy anything for the craft part of each project. I did the big cutting (obviously!), but the kids were able to help in some capacity with nearly every step along the way. We used my paper punches whenever possible and Preston liked doing that a bunch. Gracie liked playing with the little punches, but isn't quite strong enough for the punching itself. Both kids liked coloring and gluing (Gracie prefers to put the glue on herself, though!), Preston did great with the "ruffle maker" (paper corrugator) and sticking on the pop-up foam pieces to attach the hearts. He also helped assemble the flowers, but only lasted through a few before he wanted to eat a lollipop himself... which he did... just one, much to his dismay!








Sadly, Gracie got sick Tuesday evening and didn't get to/want to help much after that. Apparently, she wasn't quite over what she had just over a week before and with the four doctors appointments last week, her body couldn't handle the overload and she relapsed - - and then some. Our school lovin' girl only attended one full day last week and missed her Valentine's party on Friday. "Luckily" her pulmonologist ordered labs on her trach secretions last week, so she had a baseline for the bugs that Gracie was brewing. Between those labs and the recent developments with her condition, she prescribed the "big gun" antibiotic, Cipro, to fight this once and for all. Ugh... that's a brutal med. The kicker on all of this... our pharmacy doesn't carry it in suspension form (so we can give through G-tube), so between our pharmacist and my own efforts, we called a gazillion other pharmacies... no one can get it until Monday. What the what? It's not like we live in the middle of no where... Ri-dic-u-lous. Anyway, back to my girl... it's so hard seeing her this miserable... and she's been like this for the better part of a few weeks. Like always, she tries to rally, especially after a series of breathing treatments, but just can't do it for more than about 45 minutes before she tuckers out. It's times like this when we are reminded of the cruel reality of her very fragile health. Not that we "forget" really, but it's not something that we are keenly aware of and constantly thinking about the way we used to. So, when she's sick... really sick... we are easily transported back those first four years.

Here's a sweet pic of Gracie the day before the "ick" returned

In my sleepless, suctioning 'round the clock stupor, I somehow managed to erase several days worth of pictures from my camera... I was devastated. One of the days included pictures of a major "baby book" moment for Gracie - - opening her first Valentine from a (non-relative) boy!!! Mighty Max (with his sweet Mama's help) sent Gracie the most adorable Valentine package. She opened it with such delight and purpose, examining each and every little thing, knowing it was special and picked just for her. I am so sad to have lost those pics... so sad. Thank you Max (and Amy!) for thinking of Gracie and sending her so much love! We ♥ you!

♥Happy Valentine's Day Everyone!!!♥

Foto Friday 2, vol. 4

For Christmas 2005, John and I received the most beautiful gift from Gracie, courtesy of her nurse, Judy. Judy was Gracie's nurse from November 2004 through July 2008. She worked so many hours... gave so much of herself to Gracie and to us... and was (will always be) so much more to our family than "Gracie's nurse."

I have photographed her (their) priceless gift to share here with you. (The beauty of the message is easily seen despite the fact that my photo quality isn't great because it's pictures of a laminated picture book.) Suffice it to say that tears were plentiful when we opened this little book on Christmas Day 2005. Reading it today is no different. It still affects me just as much, if not more. The words, both in the beginning and within the book, are so beautiful.

The title page reads:

Dear Mommy and Daddy,
In this small book, you will find
photos of me as you see me in my normal,
everyday life. No touch-ups, fancy
clothes or hairdos, or special backgrounds - -
just me, naturally. And therein lies the magic!

My physical voice is presently silent, but my
spirit has always spoken loud and clear to all
who would listen - - and you have always listened.

So once again, please listen as my spirit tells you
what is in my heart and what I would have you know.
And in doing so, feel the magic of Christmas - - and me!

Love,

Gracie

"Potty"

For a couple of months now, I have been regularly stopping by the restroom (I know... TMI!) after Gracie's VitalStim appointment - - both as a necessity prior to the drive home and for the opportunity to practice potty related signs. It's an ideal time to work on them because 1) there is space for both of us 2) she's in her chair so she has better access to everything and 3) there are mirrors for her to see me signing even if she's not directly in front of me.

This afternoon, I bypassed that regular stop because we were in a hurry to get to her ENT appointment several buildings away. As we passed the hallway where the restroom is, I saw her arms and legs wiggling about like crazy... and a little hand shaking a "t" (the sign for potty) out from under the KidKart canopy. She was reminding me of the routine. I was so excited and proud of her! I signed that we had to go to the doctor first and then go potty second. She didn't get upset and moved on to signing about the elevator which we also do every single time.

This evening (again, this will be too much information), I was in the kids' bathroom, with the door open, going potty (I know... I know...!). All of the sudden, I see the face of my sweet, smiling girl appear on the floor in the doorway... then her shoulders... then her torso. I hear the familiar sound of her diaper unfastening as she continues to grin. I know she thinks it's bath time. I sign, "No Gracie, your diaper must stay on." She signs "potty." I sign back to her, "Yes, mommy is going potty." She keeps shaking her little "t" furiously then adds her other hand, apparently for extra effect. Because, as I washed my hands, I noticed that she had gone potty right outside the door on the floor! I was thrilled!!! Not about her going on my floor, of course, but her signing (or two handed "shouting!") and awareness of her own potty on that level sure thrilled me! So exciting!

I have noticed lately that she often takes off her diaper the minute she goes, so I am going to try to get her interested in sitting on the toilet again. (Previously the potty chair was scary for her.) I don't expect that this will be the start of "true potty training" just because of her mobility issues, but I am excited that she's clearly making the connection with her own body again. She had started doing this when she was much younger, but it just "went away" like things sometimes do with her - - skills, expressive language - - things come and go in little waves. In any case, this is the most enthusiastic she's ever been (and independtly expressive) about "potty." So exciting!

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Gracie had a good ENT appointment. Like yesterday's appointment, this was long, but mostly because we waited in the lobby for 45 minutes. Like yesterday, though, she was super happy, playful and loving the whole time. We signed songs, made a scene with excessive amounts of Eskimo kisses and she even asked to get up from her chair... so she could stand between my legs for a few minutes and watch all the kids play. It was fun and the fact that she wanted to stand thrilled me to no end!

Her doctor was great this time - - he answered my questions and concerns, agreed to order a test (that her speech team is interested in getting done to obtain more data regarding her swallow function) and he was wonderful with Gracie. (He is an incredibly knowledgeable and experienced doctor - - so he's great in those respects. But he's often in a hurried state because he's overbooked... thus, his bedside manner is often terrible.) She made him laugh a couple of times when she helped him place the stethoscope in all the places that she knows he needs to check (and she does know!). She leaned to the side to let him look in her ears when she saw the otoscope and she even complied when he wanted to look up her nose and in her mouth. This is the most amazing transformation of Gracie's appointment experience. It used to be so stressful that we would leave visits with an exhausted, sweaty, limp child who was literally passed out and physically ill from the stress she felt trying to cope/understand being at an appointment. Just a couple of years ago, we absolutely had to have two adults present at every appointment. You've come a long way, Gracie!!! I am so proud of how well you cope and how mature you've become with waiting (and waiting and waiting) and being examined.

(So far, I'm diggin' February!)

February First

Gracie felt so much better today. Yay!!! Her eyes were a little less puffy (still not normal, for sure), her congestion definitely reduced (because she huffed and puffed on that nebulizer so much over the last three days that she practically blew our house down!) and she was much perkier than she's been since the morning of her heart cath two weeks ago. It was so nice to see her grinning, throwing kisses and grabbing us for hugs today. (John and I still marvel at how she can do a complete 180 several times during the course of any day, but when she's on the "good" side of it, she's always so happy and loving.) She's still having a rough time with her feedings... which is nothing new... and that's always the last thing to get back to status quo when she's been under the weather. And, I've said it many times before, "status quo" on feedings isn't all that good.

The pulmonology appointment was soooo long... over two and a half hours. (See the nurse, see the RT (Respiratory Therapist), see the doctor, wait for the nurse to bring in the second dose of H1N1, schedule a follow-up appointment). But, it went well. The doctor agrees with my "diagnosis" that this most recent illness is sinus related. She said that her lungs sound "pretty good for a trach kid who doesn't swallow and has been micro-aspirating for almost seven years." She definitely wants to keep her on the same breathing treatment regimen that she's been on... it's insanely time consuming, but it seems to be doing the trick.

She also ordered a "sweat test" to rule out Cystic Fibrosis. This is actually something that's been ordered before... just to "rule it out," but was not considered urgent. She was sick the one day I tried to schedule it last year (a day I knew John was off to be with Preston). It's still not urgent, but something they'd like to confirm since she has similar symptoms of CF. To be very clear, she also has many reasons to indicate it's not that. Anyway, it was too hard to schedule before with John's previously unpredictable schedule and my (and the doctor's!) less than enthusiastic desire to have Preston tag along! We'll be doing the test in the next 4-6 weeks. I am not worried about the results.

Gracie Girl's got a ton of appointments this month... next one is tomorrow with the ENT. Hopefully, we will have time to chat (translation... he will make time to listen to me and answer all of my questions, otherwise, I will have to wear my mama bear suit!) about Gracie's swallow, the failed TEE during the cath and her sinuses.

It was a good day... much, much better than many we've had lately, so it wasn't hard at all to find a lot of happiness in the start of February. Hope your February first was fabulous!

Happiness is... loving thy neighbors and my daughter

Gracie's been having some fairly rough days. For most of the week, she did not feel well and had only little pockets of time where we'd catch glimpses of her perky self. She missed school Wednesday, perked up a bit Thursday (still only a mediocre day overall) and has been laying low all weekend. She has had difficulty tolerating her feedings, she's got a lot of chest congestion and her eyes got extremely goopy as the weekend progressed. (I think she might have a sinus infection - we have an appointment first thing Monday morning.) She's getting 'round the clock breathing treatments (she's the perkiest immediately following those), two of which, because they're coupled with her regular treatment regimen, take well over an hour.

On Saturday, she didn't emerge from her room until almost noon. Up until that point, Preston (with the exception of suctioning every fifteen minutes or so) had my undivided attention. Thus, I felt slightly less guilty when Gracie demanded my complete attention. She finally signed that she wanted a bath - - and she immediately got a long, prune-inducing, steamy soak with her brother! (Thankfully, he thought it sounded fun, too!) After bath time, Preston was begging to go out and play at the park. Just as I told him he could play in the backyard, our phone rang. Our friends (and neighbors, Rachel, Lance & Addison) asked if we wanted to go to the park. I explained Miss Gracie's situation and they said they'd take Preston. He was ecstatic and I was so grateful that he'd get a break from the house. I planned to knock out one of those hour+ nebulizer treatments while he was gone. (Understandably, he's not overly fond of the continuous noise of the machine - - not to mention the fact that both Gracie and I are completely occupied.)

As it turned out, they didn't just take him for an hour. He was gone the rest of the afternoon, used the potty at their house a gazillion times (the kids were motivating each other, we think!), had dinner with them and came home around 6:30 happy as a clam and exhausted! He was out by 7 pm! I just love our neighbors! They are so good to all of us! (Tonight, they brought us a huge variety of rolls from a sushi restaurant... so sweet!)

Here's a precious picture of the "happy couple" as they watched part of a movie.
(They actually did more playing than watching, but Rachel told me that when they did stop and watch, they were all cuddled up!)

While they were loving on my boy, I got in some good TLC time with my girl... time that didn't solely involve therapy or appointments. (I say that because with the exception of our "quality" time in the middle of the night, lately I feel like my alone time with Gracie revolves around therapy and appointments.) We did her marathon breathing treatments and CPT. After that, she actually asked to sit at the table and I, of course, obliged! She refused her hearing aid, threw down half of the stuff I brought her and didn't want to "listen" to anything I signed to her. I pulled out the laminated, colored shapes I made ages ago and wanted to see if she could match like shapes (by giving her a red triangle, red circle, red square, a red rectangle and then a match to one of those... the idea is for her to place the match on the board). She refused... fine. She's sick... she's in charge. I didn't care what she wanted to do, I was just glad she was doing something other than lying on her bed.

What she wanted to do was name colors (she's been doing this for years)... colors of the bears, the blocks and the laminated shapes. So, I put eight squares on the Velcro board and let her go to town! I purposely sat on her blind side so she wouldn't be as distracted by the camera. (Oh... and, yes... she's completely deaf... and yes, I talk to her like she's not... but she is. I just can't not talk! ) I did not sign any answers. I did try to get her to "find green" instead of randomly picking them up, but she ignored me! Other than that, I just signed to her when she needed to "do better" with her signing or "look and try again" when she made a mistake.



You can see in her sweet face that she doesn't feel well - - she's mottled, red-eyed and puffy - - but that didn't stop her from doing her colors! As always, I am amazed by her spirit and will. She felt cruddy... no two ways about it... but she still wanted to try and do something.

After "table time," we cuddled up and spent the better part of an hour staring at each other and exchanging Eskimo kisses! Today was a bit better. Hopefully, tomorrow will be, too.

Happiness is... Foto Friday 2, vol. 3

When you look this cute, who cares about Helmet Hair?!
In an effort to get Gracie used to wearing a helmet (wish us luck!), we keep sticking Preston's on her head for brief periods. This time, while she still wouldn't let it be fastened, she did have a great big smile on her face. I figured if I took her picture and she could see how cute she looks, she might be more compliant!

Little Drummer Boy

Happiness is... remembering

On Monday, Preston got a haircut. (Gracie just had one four weeks ago, so isn't due yet.) His hair is short and should be just the right amount of surfer-boy shaggy by the time late spring rolls around! There's nothing like a fresh haircut to alter a child's appearance... and pull at this Mommy's heartstrings! It reminded me of the short cut he had last year, so I pulled up an older picture of him. The next thing I knew, I spent the better part of two hours steering down memory lane watching videos and looking at pictures of my "babies" - - and, when I do that, I feel this tiny (okay, huge) tug in my heart. While I thoroughly enjoy where they are in their respective developmental stages, in some ways, remembering makes me want to freeze time.

They both have changed so much, though, for obvious reasons, Preston's changes are far more noticeable on the surface and happen much faster than Gracie's. Their progress is miraculous, beautiful and, of course, very different. His changes come naturally and fairly easily while hers have months or years of patience, persistence and work behind them.

So, back to last night... I watched this video I made last January and realized I had tears in my eyes and an enormous lump in my throat. So much change and growth has occurred in twelve months; it's astounding. I am glad and grateful that I spend time (usually while up with Gracie) documenting things my kids do, uploading pictures & videos and gathering my thoughts about it all so that I can easily indulge my mamaheart and remember the littlest things with the simple click of a button.

(Things like exactly long it used to take Gracie to toss a ball, how she'd sweetly clap for herself, how much joy swinging gave & gives her.... what Preston looked like when he'd point to his body parts, how he loved swinging his sister, what he looked like when he signed "throw" to her and what he sounded like when he said "buh" while signing "bug." All of that has changed now, but because it's captured in this format, I actually do have little moments of them frozen in time.)

Photo and video editing at www.OneTrueMedia.com

Happiness is... cake bon bons

Tonight, our kind neighbor shared this sinfully delicious treat with us...

There may or may not have been more than this when she gave them to us!! :-)

Happiness is... knowing you've made it through one more day

from the Charles M. Schulz book, Happiness is a Sad Song

Some days are like a comedy of errors.
Some days feel like the better choice would have been to stay in bed and try again tomorrow.
Some days being a grown-up with responsibilities just stinks.
Today was some sort of day in our house and it made me (and John) happy to just get through it.

Is it a full moon? Is something way off balance? H- is mercury in retrograde again...?! :-)

And it wasn't just us. It seems like something went on with so many people we know. Serious things... surgeries, illnesses, hospitalizations... and those are far more concerning than the things that happened in our house. Nevertheless, it was still one of "those" days.

Some days, the washer overflows (which ours did today).
Other days, your cup runneth over.
Thankfully, most days, it's the cup.

Happiness is... Go Kart World

John took Preston to Go Kart World today.
He had a ball "racing" around the track like a "big kid!"