Happy 1st Birthday, Jack!

Happy Birthday, sweet little boy! We can't believe you are already ONE!!!



Have tons of fun, make a big mess with your cake and frosting and make sure your mommy and daddy take lots of pictures!!! We love you so very much!

Next year, sweet nephew, you'll have a baby sister at your birthday party! :-)

This is more like it!

Thankfully, the trend of healthy, happy kids (and parents!) has continued for six straight days now! We've had fun, busy days with some wonderful moments captured on my cell phone.

Tuesday after school...



"First I'll try to pick it, then you try."

After a trip to Walmart...



Much needed haircuts on Thursday...



Cute as can be!



Friday after school...

Oh, Bubba... how did you get so big, so fast?

Saturday morning...

It might be a blurry shot, but the joy in Gracie's face is clear!

On our way to meet friends at the park Saturday afternoon...

Preston was so excited that he didn't even protest getting in the stroller! Gracie actually wore those sunglasses to the end of our street... a record! And, all three of us had so much fun playing with our friends!

Foto Friday 2, Vol. 7 - Catch-up

I wish I could say that it's been smooth sailing since I last updated... it hasn't.
The pain from Gracie's ear infection (and the remaining congestion from getting over pneumonia) got the best of her on several days throughout the last ten and (by my estimation) helped induce the migraine that plagued her from late Saturday afternoon through Monday evening. Thankfully, she has now had three really good days in a row - - the most successive "good days" she's had in over a month. It's been a really rough stretch since January. On Wednesday, she finally returned to OT and PT for the first time in three weeks. Dare I say (or even think) I see the light at the end of the tunnel?!

Preston returned to school on Tuesday for the first time in two weeks. I probably could have sent him on Friday, but after a few hours of play and activity last Thursday, he was exhausted and I just didn't see the need to push it. He's now very much back to his old self - - and has new "all boy" bumps and bruises to prove it! He's got a scary-close-to-his-eye shiner on his left eye from getting tangled up with a bike on Saturday evening (my fault... I should have stopped him from trying to chase the big kids) and a bruise/burn/scrape on his right cheek from getting to squirly on a slide with his friend. This "boy" stuff continues to yield me gray hairs and wrinkles weekly! Oy!


Needless to say, with all the ick in this house, I have neglected Foto Friday (amongst other things) for a month. Here are some of the better moments from the last several weeks... with some more to follow in the next few days!

Happy Birthday, Daddy!
John's birthday was February 28th. When he got home from work, we had dinner and then a very low-key celebration with a chocolate chip swirl cake (too sweet for frosting!) made by the kids and me. The hat was quickly fashioned as the candles sat on the cake at Preston's insistence!

Leapin' Lizards
We have lots of lizards in our area... lots. As much as Preston enjoys watching them scurry on our backyard wall, he's not overly fond of being too near them. John caught a little one a while back and helped Preston get a closer look.

He's still not convinced... and I am so glad! I do not look forward to the day when he wants some cold-blooded pet, or worse, a rodent!
(A lizard got in the house the other day and Preston, in one giant leap, made it from the floor to the seat of the chair, all while screaming that there was a lizard in the house. As he screamed about how scared he was, the baby lizard froze in fear. I stuck a tupperware container over it and waited for John to get home and rescue all of us!)

Can your toes do this???
Recently taken during what we affectionately call "Gracie Yoga," I have hundreds of pictures like these. Gracie's feet can do amazingly flexible things! Her big toes are more like opposable thumbs and she can bend her other toes every which way. Sweet, petite feet, indeed (size 6 toddler shoes at nearly age seven), but super-powered in their own right!

An afternoon with Papa
The afternoon before Gracie was blind-sided by pneumonia, Papa was here for a few hours. He hung out with Preston and played (rough-housing, soccer, tennis... you name it!) until Gracie got home from school.

Once Miss Gracie was home, she settled into her favorite spot in the world. (And he was afraid she'd forget him when he was in Afghanistan for a year... ha!)

While the boys are being silly boys, Gracie's content with Papa's dogtags in her hands.

Oh-so-very sweet!

Update #2 - This, too, shall pass... right?!

Um... don't even know where to begin.

- Preston is still sick... still has a nasty cough, his fever finally broke on Sunday and his tummy is still bothering him... everything he drinks and eats (not wanting to eat much still) goes right through him (TMI!). He hadn't thrown-up since Friday around 3:30pm... until tonight at 7:30pm... what?! We were, in vain, trying to get him to eat some dinner. He whined, "I can't... I'm too sick." I said (in all my mommy ignorance, thinking he just didn't want to sit at the table), "You're still sick, Bubba, but you're not that sick."
To which he responded by throwing up all over our kitchen floor... twice! Poor little dude.

- When I got Gracie out of the car from school on Friday, I noticed she had blood in her left ear... what?! Never have had that experience - - after easily over a hundred ear infections - - so I was startled. I cleaned her up, fully inspected her ear with a flashlight and it seemed to have stopped. I thought maybe she scratched herself or got scratched. It was back again Saturday morning, so I called the doctor and he said that it's clearly infected. I told him she's never had blood drain out her ear from an infection and he said, "It's common, ma'am." Oh... so that should make me feel better about it? I was appalled that he didn't want to see her right away.
I took her in today to have it looked at. He suctioned it... forever. She hated every minute of it. He said, as though I couldn't tell by the amount of suctioning he did, that it was a terrible, terrible infection. He put in an antibiotic-soaked sponge, prescribed ear drops and yet another oral antibiotic. (On the latter, I informed him that she's been on "everything under the sun" over the last 28 days... her bottom could really use a break... was it really necessary to start her on another antibiotic when she just ended a course of a different one this morning? He said it was. Mommy is so sorry, Gracie Girl... for you and your very, very sad bottom.) He also pulled the "almost out" tube from her right ear and did a tympanogram... full of fluid. Ugh. We go back in ten days.

The good news on all this... with the exception of sleeping more than usual over the weekend, you'd have never known anything was bothering her.

- Like a good little boy, Preston shared with his mommy and I had to call John at work on Saturday around 2:30pm to tell him that I was pretty sure I was getting the stomach portion of his "ick." By 3pm, I had it... full-on. By 4:15pm John got home and I spent the next several hours getting well-acquainted with the fine details of the tile and grout on our bathroom floor. I was incredibly weak all through Sunday, but rallied to take care of the kids for a couple of hours while John went to the grocery store and Blockbuster.

Let me just say this... as bad as I felt (worst stomach flu I can remember as an adult... every muscle in my body still hurts) it hurt my heart far more to realize that my little man had also felt that bad, not to mention that Gracie feels that bad all too often. Not that I needed the reminder, Preston... please don't feel compelled to share again, little man. (And, please, please, don't be going for round two as I type this. Let that incident earlier tonight just be a fluke.)

- Like a good wife, I shared with John. He woke-up today feeling green. He was "lucky," though, and didn't actually get the full-blown ick. Just a very wimpy version of it. He spent five hours in bed, rallied for a while and then turned in early tonight.

- So, Big Swann is sleeping it off. Little Boy Swann is asleep, hopefully sleeping away round number two. Little Girl Swann is supposed to be asleep. Instead she's giggling in her room and watching, "Signing Time." Thank goodness for small favors!

A little levity and an update

Fact of Life:



After Monday and Tuesday...
even the calendar says

W T F

My mom sent me this a few weeks ago...
It made me laugh...
I hope it made you laugh, too.



For the second week in a row, a little Swann woke up in the wee hours of Wednesday night as sick as can be. This time it was Preston. Fever, barking coughing like a seal and too congested to sleep soundly. By just after midnight Friday, he was throwing up every hour and as of late morning still can't keep any liquids down. He's resting next to me at the moment, watching "Dora" and trying to be brave even though he's super sad to be missing school and his friends. We are headed to the doctor at noon... where I am so thrilled, again this week, to sit on the "sick side" and breathe in even more of the community's current "ick" with one of my children. Before getting back into the car, we will go through a full decontamination process that might rival what would be done at Three Mile Island! The last thing anyone needs around here is to pick up another bug.

I am super happy to report, though, that Miss Gracie avoided the hospital and is on the mend. She woke up this morning with a twinkle in her eye that's been missing for days. While talking with the school RN this morning, I was told that everyone there also noticed that her sparkle was back. Yay!

Each day this week has been small step toward recovery. On Monday night, she gave me her special hugs and asked for kisses... the first real spontaneous communication we'd seen in days. She attended school on Tuesday for the last three hours of the day and fell asleep in the car less than ten minutes after I picked her up. She was pretty quiet Wednesday and Thursday, not working much at school, and napping at home in the afternoons. We've skipped all her therapy appointments this week and hope to return to her full routine next week.

Thanks to everyone for all your well-wishes, emails, comments and prayers. Needless to say, I am so behind on responding to emails, reading blogs, etc. Please know how much we appreciate all the love and support you show our sweet girl and us... it means more than you know.

Pneumonia

For the third time since her heart cath in January, Gracie's really sick. This time it's pneumonia. Our girl can't seem to catch a break. Ten (most of which were busy and wonderful) days after ending her course of Cipro for a completely different kind of "ick," she's down for the count again. Big Time.

She woke up around 1am on Wednesday night (Thursday morning) with a 103.1 fever and violent retching (her fever has since reached 104.2 but seems to have leveled out in the low 102s now). By Thursday afternoon, though I couldn't yet hear much in her lungs, I suspected she was brewing pneumonia. Something about the way she was "presenting" reminded me of how sick she was a few years ago. On Friday afternoon, her doctor confirmed it in her right lung... base of the lobe... so likely not an aspiration pneumonia. He gave her an antibiotic shot and prescribed a ten-day course of yet another antibiotic which she started today.

So far, we've been able to keep her at home (thanks to all the equipment that we have on hand) and my ability to keep up with breathing treatments, chest percussions, hydration, etc. Her "team" agrees that as long as she's not any worse, it's better that she's not in the hospital where she'd be more uncomfortable and likely get sicker from exposure to all the other "ick" there. If she sounds any worse, starts having lower oxygen saturations or seems to be struggling more despite her numbers, I will take her to the ER. My biggest concern is her hydration (she's retching all the time) and her CO2 levels. In the past, she was notorious for working hard to keep her sats up and then suddenly down-turning because she'd retain too much CO2. (Doc also gave her something for nausea in the hopes that it will become easier to get fluid in her, though I don't think it's made a dent.)

This is the first pneumonia she's had since July of 2006... and that was the onset of heart failure prior to her third open heart surgery. Her heart looks good, so this is "just" pneumonia.

Here she is last Sunday (Daddy's birthday) chillin' on her favorite bench at the park.
It's amazing how fast things change.
Hopefully, those drugs kick in and she is back to herself again, ASAP. I miss her.

Foto Friday 2, vol. 6 - Toothless Wonder and Little Daredevil

February 14, 2010

February 18, 2010
This time, last year, Gracie lost her first tooth. It wasn't much later that she lost the one right next to it. This week, she lost two more... for a total of four. Her bottom two permanent teeth are growing in (in opposite directions!) and now she's toothless on the top! As far as grins go, she couldn't look more like an almost seven year-old! Tooth fairy is scheduled to arrive and collect both teeth sometime in the wee hours tonight!


Daredevil or Athlete... you decide!
If it's there, he will climb it!




Scrimmaging with Daddy while Grandpa John cheers him on

Growth Hormone Deficient

Gracie update: Within 48 hours of starting Cipro, she is definitely resembling herself again. However, as much as Cipro knocks out bugs, it also knocks out her gut and gives her a horrible diaper rash... the side effects are brutal for her and, thus, we only give it as a last resort. Unfortunately, it's nearly the only antibiotic that works on her bugs. She had a good day at school, but is not tolerating her feedings well at all and is still pretty weak.


Two weeks ago, Gracie's Endocrinologist called to discuss the lab results from the day of her heart cath.

The good news - - unlike they initially thought the day they drew her blood, they did, in fact, draw enough to run all labs the Endo ordered. So, no trip to the lab this month. Good.

Other good news - - Gracie's Vitamin D and Calcium levels were normal. I was floored. I thought for sure, given the difficulty we have getting nutrition in her, she'd be deficient in both areas. She's not. That's good.

Now... for the rest of the news - - Gracie's growth factors are both low. They always have been, but not in the "we need to treat" range, rather in the "they are low and we'll monitor every two years" range. One is low, but not low enough to justify treatment on its own. The other growth factor is very low... normal is 1.5... Gracie's is 0.7.

So, what does this mean? For the moment, it means we wait. No treatment action will be taken at this point until we spend the next several months getting all of her specialists to weigh in on the pros and cons from their perspective. Then we'll put everything together, including our own opinions along with the advice and wisdom of parents who've already walked this road, and try and make the best decision for Gracie.

At this point, what we do know is this:

- She is clearly very tiny... which we've known for a long time, obviously.
(She's between 37.5"-38.5" depending on how stretched and straight she is and she's 25 pounds. Despite every effort, we cannot keep weight on her. Her heaviest weight was at age 4 and she was 30.5 pounds. Her highest weight in the last 16 months is 26.5 pounds. However, she is incredibly small regardless of her nutritional status. I've kept an obsessively accurate log of her caloric intake and, in theory, she should still be bigger in weight and height.)

Her doctor (whom I like very much) kindly and gently made a point to tell me that the decision is ultimately ours as her caregivers. She wants us to consider, first and foremost, how we would handle Gracie getting bigger as we continue to get older. Obviously, our dream is that Gracie will progress with her ability to stand, walk and transition independently. We won't give up believing that she can do it. Likewise, we won't give up believing in her ability to make great strides and live a more independent life someday. As time moves further and further along though, we also have to consider much more seriously the fact that these things might not happen for a really, really long time... or perhaps not at all. It doesn't mean that we aren't hopeful for our daughter; our dream is for her to reach her fullest potential - - whatever that may be. As her parents, we give her every tool to which we have access (and fight for access to those tools we don't have) and we don't allow a definitive line to be drawn in the sand about anything regarding her potential. That being said, we are keenly aware of what reality will look like if those things don't happen.

This piece of the "do we want her bigger?" decision is easy for us. We are not considering ourselves... we will figure out how to manage if she gets too big for us to easily care for as we age. If she's smaller, then it's obviously much easier for us to carry/transition/help her with all mobility tasks. But... we don't want to keep her small for our sake when there is still hope that she'll be independently mobile. There is plenty of equipment to help us with those things and if we need to hire help someday when we're older, we will. And, in all reality, even though she has a lot of very tall family, there are some shorter women, including me... I'm 5'4" (according to my driver's license!) so Gracie wasn't necessarily destined to be huge... and likely wouldn't have tremendous growth with growth hormone treatment.

- Typically, with Gracie's numbers, an MRI of the brain would be ordered to get a good look at her brain, specifically the pituitary gland. While the labs are very informative, more information about the brain would give clarity as to exactly how deficient she truly is. Gracie's last MRI was done in August 2004. There were some abnormalities noted about the pituitary gland, but her doctor would prefer to get another MRI done now that she's nearly seven. Unfortunately, because of her pacemaker, she cannot have an MRI. So, we base it on the labs, her size and the MRI from 2004.

- With the Orthopedist, we need to discuss the fact that Growth Hormone is contraindicated for patients with scoliosis (because with more rapid growth can come faster and more severe curvature). He might not consider the scoliosis piece to be too much of a concern as Gracie is already slated to have spine surgery someday... when she is bigger, ironically. Perhaps his biggest concern about her spine will be how much/how fast the curve deteriorates rather than if it deteriorates.

There is also a potential side effect (though not common) for hip issues. Since her Orthopedist is already concerned about her potential for hip growth plate separation (thus the full-body brace that's been casted... that experience is another post in and of itself), he might be less inclined to support GH treatment for that reason alone.

- We need to discuss with the Cardiologist, too. She will, when she is bigger, need an additional open heart surgery to replace her mitral valve. It is our assumption that her Cardiologist would be in favor of this treatment for that reason. Obviously, with growth, she'd be more closely monitored to be certain that her heart can handle the work for her increasing body size. (But, really, we are not talking about rapid growth. If we treat, we'd start incredibly slow and monitor her very closely with all of her specialists.)

- With GI, we need to discuss what the risks would be if we do treat with GH and yet continue to have a difficult time increasing her tolerance for caloric intake. How would she be affected? Would we definitely need to go the route of TPN (IV nutrition) and bypass her digestive system entirely? This is something we continually debate for several reasons... one of which is the big concern about her psychological tolerance of being continuously attached to an IV... she most certainly would not tolerate it.

- Another possible (though, again, not common) side effect is for increased brain pressure and headaches... sadly, all too familiar territory for Gracie.

That's "it," in a nutshell. We ask, we listen, we think... and at some point in the next handful of months, we make a decision.

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