Saturday, April 28, 2012

A Birthday fit for a Princess

Today, we celebrated Sierra's 5th birthday...complete with...
  A mommy-made Princess Barbie cake (reason #9,999,999 I am so glad to be a mom - to have an excuse to bake!)
Cute as can be friends to party with (could this angel BE any cuter???)...
With her big brother, fellow HLHS warrior, Townes
Little princesses and princes running (and SCREAMING) and dancing throughout the house
An attempt at a family picture (which, of course, wouldn't be complete without 3 of us grinning and the remaining member sobbing hysterically)...
Hot dogs, chips and watermelon (I mean, seriously, is there anything cuter than 4 and 5-year old little girls, all caught up in the excitement of being princesses?)...
and cupcakes...
and...5 hours later, after our friends (and their amazing parents, who mommy actually got to talk to since the kids were playing SO nicely! hurray!!!) finally filtered out, we helped Daddy clean up...
SUCH a fun day. We are so very blessed to have the friends and family that we do and were so sad to see them leave! Thank you for helping us celebrate today! Happy Birthday Sierra!!!

Tuesday, April 24, 2012

Turn Around...

Where are you going, my little one, little one? Where are you going, my baby, my own?
Turn around and you're two. Turn around and you're four. Turn around and you're a young girl going out of the door.
Turn around. Turn around. Turn around and you're a young girl going out of the door.
Where are you going, my little one, little one? Little dirndls and petticoats, where have you gone?

Turn around and you're tiny. Turn around and you're grown. Turn around and you're a young wife with babes of your own.
Turn around. Turn around. Turn around and you're a young wife with babes of your own. 
 Happy 5th Birthday to our precious Sierra Rose. Your daddy and I couldn't possibly love you more. It seems that overnight, you turned from our tiny little baby into a big girl. We are more amazed by you every day, by your zest for life, by your compassion for others, by your love for Jesus. We cannot wait to see what your future holds and are so privileged that God gave us the gift of YOU, sweet, amazing YOU. Happy Birthday Baby Girl. 

(To check out this amazing song, google Kingston Trio "Turn Around").

Monday, April 23, 2012

The All Clear

After a fever followed by 3 days of horrific mouth sores accompanied by a nasty rash all over his face, arms, legs and groin area and an ear infection, followed up with a round of hives all over his neck, abdomen and back on Saturday, I am thrilled to report that Bodie feels 100% better and just got the all clear from his pediatrician to return to the general population (which, of course includes TWISPP)! Praise God - and THANK YOU all for all of your prayer for him!

How does Bodie feel about this? 
Yep, I'd say that about sums it up. :-)


Friday, April 20, 2012

And the rash goes on...

I am thrilled to report that Bodie seems to be on the upswing. THANK.THE.LORD. The rash is still continuing to spread (I counted 2 new blisters below his lip today alone), but thankfully, although they look terrible, other than occasional itching, they don't seem to be bothering him. He hasn't had a fever in several days and the sores inside his mouth seem to be healing. The last time I gave him the Benadryl/Maalox solution was 7am this morning and he seemed fine all day - very playful and eating/drinking almost back to normal. So, yes, definitely on the upswing. What a pleasant surprise, since we didn't expect him to be doing this well until closer to 7 days out. Sierra hasn't showed any symptoms (please pray this continues) and Dusk and I continue to fight off whatever we're fighting (hoping it's just colds). But in honor of Bodie being on the upswing, I thought I'd share a few observations on life with a sick kid... 

1. If we ever change our minds and decide to have a 3rd child, I'd estimate there's a 50/50 chance that child will be named after whoever came up with the ingenious solution of Maalox mixed with Benadryl (even though they clearly had to be high on something to come up with a mixture like that).

2. Since my child happens to be one of the 5% who bounces off the walls from Benadryl (as opposed to passing out) and actually desperately needs sleep when ill, if we ever met said genius, I would ask if they could possibly come up with a Benadryl-less version of the ingenious Maalox/Benadryl solution.

3. My children's desire to cooperate with oral medication is inversely proportional to their need for said medication. 

4. My need for sleep is directly proportional to the number of times a sick child on the mend will show up at my bed throughout the night saying "mommy, mommy mommy" - or remain in bed screaming "MOMMY!!!" at the top of their lungs. 

5. As parents, we often say (and really, truly mean) that we'd take our kids illnesses on in a heartbeat. But I gotta say, maybe it's not a bad thing that they get them instead of us - their resilience never ceases to astonish me. As an adult, it can take me a week or longer to recover from 1 canker sore - and yet my son can recover from 10 in less than 3 days. AMAZING. But then, he's kind of a rockstar. 


Thursday, April 19, 2012

Hanging in there...

24 hours further into this Hand, Mouth and Foot thing and we're hanging in there. Bodie seems to be feeling a bit better. Getting a 4-hour stretch of sleep last night definitely helped him - although his eyes are still red, he doesn't seem to be in quite as much discomfort. 

The rash has definitely spread (now to his entire arms and hands, legs, groin and face - you can see it on his arm in the picture above on the left) and it looks terrible, but it doesn't seem to bother him too much, thankfully. The whole Benadryl/Maalox and Popsicle combination seems to be working pretty well for the mouth sores. He actually felt well enough to eat a bunch of pasta for dinner tonight, which shocked me. 

The rest of us? Meh, we're not hanging quite so tough as Bodie. This morning, I had to load both kids into the car and take them down to Torrance for the ultrasound on Sierra's hand. Since we scheduled it weeks ago, I didn't want to cancel it simply because of Bodie's current condition. So, I loaded the kids up and figured I'd force Bodie to stay in the stroller and not touch anything. We got there, they didn't have our paperwork (apparently, I was supposed to bring it - who knew?), so then we had to wait for them to call and get it faxed over (you can imagine how excited Bodie was to be confined in his stroller for even longer). And then, when we finally got in there, I told the ultrasound tech she might not see anything since it felt to us like the cyst might have burst. She stopped what she was doing, looked up at me like I was a total moron and said "wait, there's no lump anymore? Then, there's no point in doing an ultrasound. We'll just cancel it." Honest to God, I started crying right then and there.  She said "I can see you're having a rough day. I sure hope it gets better." It took all my strength to not reach out and punch her. ;-) I had to resist the urge to give her my entire life story right then and there, including how my child has 1/2 a heart and leprosy at the moment and I was just trying to be a good mom in not canceling my other child's doctor's appointment even thought I thought the cyst was gone. In my crazy-mom state, I imagined crazy toxic fluid building up in her hand that we needed to look at to rule out. Turns out, not so much. We left without the ultrasound. Of course, the silver lining is that Sierra's cyst miraculously resolved on its own. Total answer to prayer! :-)

Dusk and I are both coming down with something. I suspect it's the "I haven't gotten near enough sleep this week" sickness, but Dusk thinks his might be the flu - or maybe Hand, Foot and Mouth? Man, I shouldn't even joke about that one! Hopefully just exhaustion that can be remedied with a good night of sleep. Hoping tonight will be the night! Oh, and his hip is completely inflamed - his doctor isn't sure why, but they're getting him in for an x-ray next week. And we ended the day with a fight over giving Bodie Gentian Violet. It was one of those stupid things that wouldn't be a big deal - if you both weren't exhausted, stressed and feeling under the weather. Fun times. Short story is that Gentian Violet is supposed to help heal the mouth sores more quickly. BUT you have to apply it directly onto the sores, which, in Bodie's case, happen to be at the very very very back of his throat, almost near his tonsils - oh, and the Gentian Violet has to be applied very precisely so you kinda got one shot and hope it doesn't trigger his gag reflex. Suffice it to say, Dusk and I were not in agreement on whether we could actually pull it off. So, after a heated debate, Dusk won - no Gentian Violet for Bodie. Hoping he can kick this on his own.  :-)

But I do have to say that today wasn't all bad. Since Dusk wasn't feeling so great, he ended up coming home from work early and was able to stay with Bodie so I could take Sierra to swimming and gymnastics (thanks honey!). Not chasing Bodie around gave me a great opportunity to take some pictures of the fun...

In the pool...

(This picture cracks me up - Sierra is sitting there happily waiting to get back in the pool, while the kid next to her is splashing and goofing off - is this the difference between boys and girls or what?!?)

And, on to the gym...

Please keep praying for healing for Bodie - and less stress and better health for all of us! Thank you!

Wednesday, April 18, 2012

Hand, foot and what disease?

There have been 4 times in my life as a parent that my mother's intuition kicked in BIG TIME. Where I just knew doctors were wrong. In each case, I was right. I tell you these stories not to point out how great my "Mommy's Intuition" is (for how can I brag about it, since I know in each case, it was simply God prodding me?), but instead to remind us all to make sure to listen to that voice. It can be more powerful than we know.

The first time, Sierra was an infant and beyond sick and I knew something serious was wrong. But she wasn't clinically showing it to the pediatrician, so we sat by as she got sicker and sicker. It took them a week to determine that she had bacterial pneumonia - and by Day 6, it bought her a hospital stay. But I knew on Day 1 that we weren't dealing with something simple. I knew by Day 2 that she needed to be in the hospital, that it wasn't something we could handle at home. I didn't know what was wrong, but I knew something was serious.

The second time, we almost lost Bodie and I knew there had to be an explanation for why he decompensated so quickly. The CTICU docs were trying to tell me it was aspiration related. But I knew it wasn't. I KNEW there was something more. It would take him coding twice and some divine intervention for the doctors to realize his problem was low cardiac output and that he needed a pacemaker. But I knew. I didn't know what was wrong - but I knew it wasn't as simple as aspiration.

The third time, Bodie was admitted to the hospital for blood in his stool. I knew it was c-diff. I kept asking the docs if it was a tummy bug, if it was c-diff. I couldn't shake the feeling that it was. For whatever reason, Bodie's initial test was negative, so they threw that theory out the window and instead chased a milk protein intolerance theory around for a week until he had decompensated so badly that they were having to decide whether he would survive the trip from the step-down floor to the CTICU to be intubated - or whether they would have to intubate him right then and there. When he got to the CTICU, the first test they ran showed that it was indeed c-diff. I could have told them on Day 1. Oh wait - I did.

This week was the fourth time. Out of nowhere on Monday night, Bodie spiked a fever over 102. We tried to convince ourselves it was teething since he was gnawing on his binky like it was going out of style. But then he kept us up all night, coughing, whimpering and whining. By the morning, he looked TERRIBLE - red eyes, runny nose, the whole nine yards. I immediately called the pediatrician's office and got him in. His regular doc wasn't in yet, so we saw someone new. He was great and understood my concern that it might be Influenza. He checked Bodie over and determined that he had an ear infection (yes, AGAIN - if you're keeping track, that's 3 in the past 6 weeks) and some sort of infection in his throat, though he wasn't sure what (the strep test came back negative). He did a flu swab and sent us home on Amoxicillin, ear drops and Tamiflu (to be used if his symptoms worsened to the point where we really thought it was the flu).

I can't explain it, except to say that I felt like were missing part of the puzzle. I've seen Bodie with ear infections, and he's inconsolable and miserable, just like he was yesterday - but he hasn't run a fever with an ear infection since getting his tubes in September. His sats were low all day, his color was bad and he was on and off miserable and lethargic. I haven't been that worried about him in a long time. I kept waiting for the antibiotics and Tylenol/Motrin combo to kick in. By last night, he wouldn't let us get near him with meds (although he goes through phases of being more "anti-meds," most days he takes his meds without too much struggle). But it was like we'd put the meds in his mouth and he'd scream and scream until they all drooled out. Fun times. Another sleepless night and then he woke up this morning with a rash on his legs and arms. Awesome. And he started drooling. Like as in, huge giant St. Bernard, soaking everything in sight drool. I've actually never seen anything like it. (Scroll back up to the top picture as "Exhibit A" - yes, his shirt is literally soaked in drool.) 

So, back to the pediatrician we went this morning. By the time we got there, I'd actually had to change his shirt twice because he had drooled so much he'd soaked through 2. Fun times. It took one look in his mouth for her to confirm 100% that he has Hand, Foot and Mouth Disease. In the approximately 2 and 1/2 seconds that he allowed her to look in his mouth, she was able to easily see 10 blisters. Fantastic.

What is Hand, Foot and Mouth disease, you ask? I'll be honest. I had heard of it (I mean, I think every parent of a toddler has at least heard of it since it's pretty much as common as the Chicken Pox and other nasty toddler ailments), but I had never really given much thought to it. But let me tell you, IT BITES.

In the grand scheme of things, it's not that big a deal. The only thing you really have to worry about is dehydration and even if your child gets dehydrated enough to need to be hospitalized, they just give them IV fluids and once the symptoms clear enough for them to want to eat and drink again (7-10 days from what I understand), you're out of there. But the day to day living it? Ack. It is literally sucking my will to live. My resolve is wearing thin. I am exhausted. Utterly spent. I know it sounds silly to say, and I know in my mind it is nowhere near accurate to say this, but damned if this doesn't feel as hard as watching all the other crap my sweet boy has been through, which, I think we can all agree, has been a mighty big load already.

It is SO damn hard watching him just want to eat and drink and be unable to. I mean, imagine - you know what it feels like to have 1 canker sore - now multiply that by 10 and put them on the back of your mouth. So, everything you eat or drink has to pass by them. Talk about painful. Oh, and add an ear infection to the mix. Oh, and Antibiotics and their lovely side effects (yes, I'm talking about diarrhea). And he's still running a fever on and off (VERY low grade - as in, hardly breaking 100 degrees, but still there nonetheless). Oh, and you're a heart kid, so you have to get your meds in even if your throat is so sore you don't want to swallow anything. I'm having to give Bodie meds by mouth approximately 10x a day (heart meds 3x a day plus antibiotics 2x a day plus alternating Tylenol and Motrin throughout the day). Do you see why the poor kid hates me and starts screaming the second he sees me reach for the syringes? Oh, and he (and I) hasn't slept more than 30 minutes at a time in 2 days. (His poor eyes are SO red and puffy from lack of sleep.) My sole goal is forcing him to eat and drink to keep him out of the hospital. Suffice it to say, my PTSD left over from knowing we'd have to take him to the hospital if he missed 2 feeds interstage has been triggered approximately 13 million different ways by this experience. And I can expect this to continue for approximately 7-10 days (maybe less if we're super lucky)? Ah yes, now you see why I hate this seemingly innocuous Hand, Foot and Mouth Disease...

Sorry to vent. Been a rough couple of days. We switched him from oral Tylenol/Motrin to Feverall (a suppository) - not ideal, of course, but any chance I can take not to get near his mouth I will, just to give him a break. And his pediatrician recommended a crazy combination of Maalox and Benadryl that actually works well enough coating his throat that he's at least able to tolerate Popsicles without screaming. Praise God! (Again, something to have to put in his mouth via syringe, but the effects are SO worth it as it seems to have him out of the excruciating pain for at least a couple of hours).

So yes, I know in the grand scheme of things, this is NOT THAT BIG A DEAL. He is home. He is thriving. This should not affect his heart function. He should be past this with no long term repercussions fairly quickly. BUT it is often hard to remember that as you're going through it. If you could keep us in your prayers in the meantime, as we go through it, we would really appreciate it. Please pray specifically that (i) the sores heal at lightening speed so that he can tolerate drinking again, (ii) his body settles into the antibiotics so that the diarrhea stops (trying to prevent further dehydration, of course), (iii) that he doesn't lose too much weight from not eating much for a week or so, (iv) that the poor kid would get some sleep so that his body can start healing and (v) that no one else in the house gets it.
(This is what Bodie thinks about Hand, Foot and Mouth Disease)



Thursday, April 12, 2012

The Art of the Guilt Trip

I'm going to come clean about something. I feel guilty. A LOT of the time. I never realized that adding another child was a recipe for 24/7 guilt. Make that child a medically fragile child and the guilt goes through the roof. I now finally understand why moms specialize in the art of the guilt trip - turns out, we have so much guilt inside, it just comes spilling out, so we have no choice but to give some away. :-)

My guilt is generally triggered when I think about Sierra, when I think about everything she has to go through as a sibling of a medically fragile child.  For whatever reason, my guilt isn't focused much on Bodie, perhaps because he's so young he doesn't yet realize how different his life could be. I'm sure that'll change as he gets older. But sweet is impossible to explain to someone who hasn't walked this path. I suppose there is guilt involved even with all healthy children, but there is so much involved in being the sibling of a medically fragile child - how the whole family stops to focus on the ill child, and the siblings often get left in the dust, wondering what happened. I am constantly wondering "am I focused on her enough? Is she getting enough time and attention from me? From Dusk? Are we making sure she's happy? Is she feeling safe and loved all the time?" and the list goes on and on.

This is something I'm working on - I know it's not healthy, and I know it's not a biblical emotion. And I know it's a BAD place to parent from (it's unbelievably hard to discipline effectively and consistently when you're coming from a place a guilt). But like I said, I'm working on it. In the meantime, I wallow a bit. Hey, I'm only human. 

My newest source of guilt lately has been realizing that I kind of missed the boat on enrolling Sierra in sports. I don't know - I guess it just didn't occur to me that, at 4, she was ready for sports. And she's never really shown an interest, outside of the dance class offered at her preschool. And, well, we've been focused on Bodie for so long that it just kind of slipped my mind. Not a good excuse, since apparently every other parent on the planet realizes that 4 is the magic age for enrolling in sports, but, hey, it's what I got, so there ya go...

Anyway, I started seeing pictures of her preschool friends on Facebook, in their soccer uniforms...and their softball uniforms...and my guilt skyrocketed. NO Mother of the Year award for me, that's for sure!!! Well, this week I decided to do something about it. I enrolled Sierra in gymnastics and today was her first day. Can I just say that all of my guilt disappeared the first time I saw this smile?
This girl was BEYOND ready and ecstatic to be in gymnastics! She had the sweetest face-splitting grin the entire class! And she did so well! I initially enrolled her in the 2-4 year olds, intending to put both kids in the class. What fun, right? Well, let's just say that Sierra's gymnastics experience was a smashing success and she's actually ready for the next class up. Bodie's, on the other hand? Epic failure. The kid spent more time running out the gym door than anything else (which of course made everyone laugh as I'd have to sprint across the gym to catch him). He had a great time climbing on top of and over everything - just never when they wanted him to. Suffice it to say, next week, she'll be in the 5-7 year old class...and he'll be in the Child Play area. ;-)

And, in other guilt trip relief, I enrolled her in swim classes 2 days a week. Ahhhh...feel that? That's just a pinch of the guilt slipping away. So nice...

Sunday, April 8, 2012

Project 52.15. Redemptive...and a whole lotta Easter fun!

 Happy Easter from the Bennett clan!!! We had a wonderful Easter, which included a last-minute trip to the desert (along with an earlier than scheduled departure back to town to get back in time for Easter service at church!!!)

To celebrate the weekend, we...

...spent our first night wandering all over the house saying "swim pool...swim pool" - and by "we" I mean Bodie...and by "our first night" I mean all night long (I woke up at 3am to him headed out to the garage looking for the swimming pool - and that was probably the 4th time I'd woken up to find him wandering) - clearly being in a big boy bed at home does not necessarily translate to being in a big boy bed somewhere else. (Needless to say, the pack and play came out the second night!)

...spent a whole lotta time in the pool (had to include both side by side pics in this one since of course, I couldn't get them both looking at the camera at the same time - and I'm not snazzy enough to photoshop them!)...
 ...we learned to jump into the water...
 ...we learned to use the new water guns daddy got us...)...
 ...we were just plan squeezably adorable...
 ...we got in some Easter Egg hunting. Even though this holiday is about JESUS and his RESURRECTION and not about a bunny, there's a place for everything - including letting kids participate in fun traditions like a massive Easter Egg hunt. We found one at a church in the desert which was neat - they had a huge egg hunt, a bounce house, lunch and praise music being played live the whole time (Bodie was totally rocking out). But, I do have to say that I now understand exactly why most hunts have age brackets (my poor kids were lucky to get 2 eggs as the big kids whizzed by - luckily, Bodie was literally so enthralled with his 1st egg that he couldn't have cared less - and Sierra was thrilled to hunt in the out of the way places the big kids had overlooked with her daddy)...
 ...we put cones on our heads and thought it was hysterical (I gotta say, I so love this kid, but the term "meathead" does come to mind occasionally! haha)...
 We gave mommy goofy looks when she tried to take Easter pics this morning...
 ...and we pretended to nap on the front porch's that for a whirlwind of an Easter weekend?
In the hubbub of the Easter weekend, we hope you'll take a few moment to revel in the meaning of the Holiday, of our savior Jesus Christ, who died on the cross for each and every one of us, so that we might spend eternity with him in Heaven. Ah, the blessed power of redemption!!!

Happy Easter everyone!