Friday, October 28, 2011

Stepping on Up

Today is a bittersweet day for me. It's Bodie's last day in his Two Steps Program. Next week, he starts in TWISPP. Let me back up a minute, since most of you (ok, probably everyone but Dusk and my mom) have no idea what that means.

Bodie has been receiving Early Intervention Services through our Regional Center since he was 10 months old. Initially it included Physical Therapy twice a week (for significant gross motor delays due to all of his hospitalizations early on) and Occupational Therapy once a week (for feeding issues related to his vocal cord paresis and difficulty transitioning to solid food). Everything was home-based, which was such a blessing during last year's cold and flu season, when we really didn't want little man getting sick (well, catching anything more than he already caught, which was a fair amount of junk).

After about 6 months of that, they dropped him down to 1 session of PT (at the center), 1 of OT (still at home) and enrolled him in August in a program called "Two Steps." TWO Steps is a graduated therapeutic program designed to prepare children and their families for participation in all facets of society (education, recreation, ADL, wellness).  The child to staff ratio is 2:1, there's 5 kids in Bodie's group and Bodie goes 2 mornings a week for 90 minutes. It's sort of like a really abbreviated pre-school (free play, circle time, gym time, snack time, etc.) Technically, Bodie scored too high cognitively to qualify for Two Steps, but his therapists petioned to get him in because they really thought he would benefit from a little separation from me and learning to properly harness his ridiculously high energy levels, sit still, etc. We were really lucky that he qualified and he has just blossomed in the program. It has helped tremendously with his separation anxiety - he no longer even glances in my direction when I leave (for the most part) and generally has a great time. He loves his therapists.

Now that he's mastered that, they tell me he's ready for the next step, TWISPP. TWISPP is a center-based early intervention group program with support from OT, PT, speech and mental health. It is a program for children who are at risk for developmental delays, children with identified disorders and for children who are typically developing. Children range from 18 months to 3 years of age. The child-to-staff ratio is 3:1. The emphasis of this program is on prevention, early intervention, and enrichment in a playful and supportive environment. Think of it like a preschool run by therapists.

So Bodie starts in TWISPP next week 2 mornings a week for 3 hours. He's been approved for 3 days a week, but we're going to start with 2 and see how he does. I'm really excited for him. I suppose it might seem like I'm pushing him -he is, after all, only 20 months and it's a little early to be thinking about preschool. But I really think this is going to be SO good for him. He's such a social kid and clearly needs the exposure to other children, both on a social and developmental level. Socially, he will love interacting with other kids. And developmentally, I think it will be great for him to be around other "typical" kids (which there are a fair amount of in the program as well as kids who have various developmental delays) who can model age appropriate behavior for him. And I LOVE the fact that the whole program is run by therapists! Although Bodie hasn't shown any big red flags for developmental issues at this point (other than the excessive amounts of energy, which could just be typical boy stuff), we do know that he's at-risk for other developmental delays. I like knowing that therapists who are trained in spotting and treating developmental delays run the program. Not to mention that, because it's through our Regional Center, it's free!!!

So, as I said, it's a BIG day for us. I got teary-eyed when I dropped him off this morning - and so did his therapists. Even though TWISPP is literally across the hall from Two Steps, he'll be working with new therapists in a new room. Big changes. Good changes for Bodie. But change, nonetheless. And if you've been reading my blog for very long, you know this mama does NOT do well with change. So, would appreciate a little extra prayer over our whole family this next week, that the transition goes smoothly (and that I can get both kids to school/therapy on time, now that they have to be 2 different places at the same time!) and that Bodie thrives in TWISPP as he has in Two Steps.  

Oh, and in completely unrelated news, the ENT was able to find Bodie's "missing" ear tube! Last week, either he or I stuck the thermometer too far into his ear canal, resulting in his ear bleeding literally for 3 days straight. (Oh my word, the ear can bleed (especially for a kid on aspirin)! Who knew?) When the ENT could finally get us in, she confirmed it was in fact not his brain matter leaking out his ears (as Daddy had thought), but probably just a scratch. But the blood and fluid we had seen draining out of the ear probably dislodged whatever was blocking the tube when the pediatrician had been looking. So, the bad news was he hurt his ear- but the good news was that in the process, we found the missing tube!


Friday, October 21, 2011

Gaining some Perspective

There's an old parable about the power of gratitude, where two poor farmers were walking together and met their Rabbi. Upon being asked "How is it for you?" the first farmer responded "Lousy. Terrible, hard, awful. Not worth getting out of bed for." God was eavesdropping on the conversation and upon hearing this thought "Lousy??? You think your life is lousy now, you ungrateful lout? I'll show you what lousy means." Upon being asked the same question, the second farmer responded "Ah, Rabbi, life is good. God is so gracious, so generous. Each morning when I awaken, I'm so grateful for the gift of another day, for I know, rain or shine, it will unfold in wonder and blessings too bountiful to count. Life is so good." God roared with mighty laughter upon hearing this saying "Good??? You think your life is good now? I'll show you what good is!"

I try very hard to live like the second farmer, focused on the beauty that life brings, and being grateful every day. But I'm only human and I slip - I think my last blog entry was a great example of that. And I'm pretty sure God was thinking "Tough??? You think your life is so tough right now, that you have the luxury of worrying about a surgery a year or two away? Let me give you something else a little more timely to worry about!"

Literally, within hours of hitting "Publish" on my blogpost, Sierra woke up with a 102.5 fever. Completely out of the blue. And here's the thing about Sierra. She's a great kid, but, well, taking medicine is not her thing. She used to be great at taking medicine - until she spent 9 days in the hospital with bacterial pneumonia at 8 months old, and since then, hasn't met a medication she trusts. Anytime I have to give her medication, I am pretty much guaranteed the first (and sometimes second or third) dose will get thrown up on me within seconds of administration. From about the age of 8 months to 3 years, Tylenol suppositories were our fever reducer of choice, for this very reason. But I don't know, it just doesn't seem right to do that to a 4 1/2 year old. So there we sat, on our kitchen floor, hours after posting that blog entry, begging and pleading with a 4 1/2 year old to take 1 1/2 teaspoons of Tylenol. Took her 15 minutes to get 1/2 of it down, before throwing it all up and starting all over again. Fun times.  The next 24 hours were spent checking her temperature, stressing about administrating Tylenol and Motrin, administering said meds (through a lot of tears, pleading, threats and throwing up - from just about everyone involved) and trying to keep the poor thing happy...all the while praying Bodie wouldn't catch it.

Her fever broke about 24 hours after it started...just in time for Bodie to get all snotty and start coughing his little lungs out. First real cold of the season. Awesome. And then...yesterday afternoon, his fever started. So we were up all night with him last night, checking his temp, checking his sats, watching his breathing, listening to him whine. He seems to be handling it ok, other than being fairly miserable. Leave it to Bodie to get his sissie's virus on top of the cold he was already brewing. He actually had a well-check scheduled for today anyway, which was ironic since he was anything but well. But we went anyway and his pediatrician said she thought he looked great other than the sad eyes and snotty nose. (As an aside, it was kinda fun to see her jaw hit the floor when she asked how many words he has and I told her about 80! I tell people this kid talks all the time, but no one seems to believe it until I tell them how many words he has!)

And, since God is apparently trying to teach me a lesson about focusing on today's problems instead of worrying about tomorrow, we got some unexpected news at today's appointment. While the tube in his right ear looks fine, the pediatrician couldn't find the left one. Looks like, less than a month of getting it in, it's already fallen out. Boo. (There's always a chance it was just "hiding" but that's pretty unlikely - they're bright blue and there's only so many places they can be, so if she didn't readily see it, it's probably not there.) We kind of had an idea we might be up against this, since it's looking like he inherited my ears, and all 4 sets of temporary tubes I had put in as a kid fell out within a month each, so I ended up with "permanent tubes." We were hoping to avoid that route with Bodie, but we'll see what the ENT says when we see him next week.

So my lesson of the day? Focus on the joys (and troubles) of today - tomorrow will bring enough of its own. And, on that note, here are a few recent pics of the kiddos...
Bodie, upon discovering a squirrel in our front yard...
 All proud of himself, after having climbed up on the barstool at the kitchen counter all by himself
Me with the kiddos at the park last week
 School pic time!!!
At lunch today - my poor baby...such sad, sick eyes...


Tuesday, October 18, 2011

The "F" word seems it's all I can think about these days. I'm not sure why, but something has triggered it to move from the safe recesses in the back of my brain to the forefront. Any of my followers who have single ventricle kids don't even have to ask - you already know what word I'm talking about. For those of you who aren't, I'm speaking of the Fontan, the "final" stage in the palliative surgical approach to HLHS. I use quotations because for many kids it is truly the final surgery for a very long time and they have years, some even decades, afterwards with no surgical intervention. But for others, it's just the beginning of a different type of path, one that includes further surgeries and sometimes transplants and then rejection fears. The thing is, you kinda don't know which path you'll be on until you get past the Fontan. But in most cases, it is the final "planned" surgery - the route that we knew before Bodie's birth would entail the Norwood, the Bi-Directional Glenn and then the Fontan.

I'm usually really good at pushing Fontan thoughts to the back of my mind. We're in the glorious days of the "normal" Glenn life, where you're so far beyond the Norwood and Glenn you kind of forget what it was like, and you're so far out from the Fontan it seems like an eternity away. So you just kind of live life normally and enjoy life and do normal stuff. And you kinda forget your kid even has such crazy physiology. But then, as you creep closer to the Fontan, you start to remember. Thoughts start to seep in. Doubts start to creep in. And that's where I find myself suddenly.

I'm not sure what is triggering it these days, though I do have a few guesses. Since CHLA prefers to do their Fontans between 2 and 3 years old, we should still be a year, maybe 2 years out from Bodie's Fontan (we're looking at next summer or even Summer 2013 if he can hold out that long). So I shouldn't really be thinking about it yet. But a lot of surgical centers do the Fontan at 18-24 months, so maybe it's that Bodie is in that window that's making me think about it and I'm seeing some of his heart buddies gearing up for their Fontans. The knowledge that, were he at another center, he'd have already had his Fontan by now. Oh.My.Throw up now. Maybe it was watching him try to run around and keep up with Sierra and her friends at the museum this past weekend, where he got so winded and his little lips turned purple from all of the exertion. Maybe it's the rapidly approaching 2nd birthday of sweet angel Travis, a fellow HLHS warrior who unfairly and so tragically lost his fight last spring - the knowledge that, were it not for this stinking disease, he would still be here with us, celebrating his 2nd birthday running around and loving on his mommy and daddy, like he should be. Don't even get me started on the tears that flow when thinking about that incredible kid and his family. Ok, deep breath.

Yeah, I think I know why I seem to be fixated on the "F" word these days.

As moms, we are consummate multitaskers, right? Apparently, that even holds true with regard to our emotions. As I think of the Fontan, I am filled with excitement, that he could be "past" all of the surgeries we always knew were coming, that he would have the stamina to keep up with his peers (the difference between pre-Fontan kids, who, like Bodie, pant going up the steps and whose lips turn purple the second they start to run around, and post-Fontan kids, who can run circles around their peers, is amazing from what I hear). I am filled with gratefulness that, as far as we know, he is a good Fontan candidate (with the caveat, of course, that this could change at any time - but, from what we know right now, he should be a good candidate). This is not true for all hypoplasts, and some do have to go to transplant at this stage in their journey, if not sooner. I am beyond grateful that Bodie is still with us and we're even having the luxury of worrying about a surgery a year or further away.

But it is major open heart surgery. I know families who have lost their heart warriors to this surgery, sweet children they have come to know and love, children who have been interwoven so deeply into the fabric of their families. Families with children who have walked into the hospital for this surgery with game faces on, said "I love you" and "goodbye" to their parents and that was it. I know kids who've had strokes, who've had horrendous recoveries and one child who had to have a "Fontan takedown." I know of 3 kids alone this last summer who had staph infections and ended up going home on IV antibiotics. Sigh. THESE are the thoughts that hit me in the shower, that literally take my breath away, make me nauseas and start shaking, make me cry out of the unfairness of it all.

And yet I know of kids who breezed through, were home in a week or two and had relatively minor complications. The tough reality is that we won't know which camp Bodie will fall into. I can only hope and pray that we fall into the latter category. Truly, I know far MORE kids who fall into that last category than any of the aforementioned ones. And even many of the kids who had rough complications ended up ok when all was said and done. So, for tonight and all of the nights I find myself fixated on thoughts of the "F" word, I focus on those success stories - the post-Fontan kids I know who, despite whatever complications they did or didn't have, are doing incredible today. The kids who are finite examples of all of the HOPE there is for HLHS kids these days. Kids who, unless you saw their chests, you would never know what they'd been through. Today, they are my hope.

And Jesus is my ultimate HOPE. HIS promises and HIS love for my family, and my son, holds us together more than anything we could ever find here on earth. I take incredible comfort in knowing that HE loves my son far more than even I can fathom (which is such a hard concept to even understand as a parent, since our own love for our children is so immense). And for that, we are incredibly grateful.

And I focus on the here and now. Because really, when it comes down to it, that's all we have with anyone, healthy or not, right? We have the opportunity, today, to love our children and to cherish them. Thankfully, tomorrow will come in its own time, which affords us the wonderful opportunity to cherish just today. And to love these two children as much as humanly possible. What an incredible gift.

So I think, for now, I'll tell the "F" word to take a hike. ;-)


Tuesday, October 11, 2011

Pumpkin Madness

This past weekend, the kids and I did our annual treck up to my parents in San Luis Obispo to pick out pumpkins and Halloween costumes and see a Cal Poly football game. We had a blast. :-)

The kids LOVED the pumpkin patch and Bodie couldn't get enough of either the maze (which, in hindsight (as in, I realized approximately 5 seconds into it), was NOT the best move for a claustrophobic mama) or the hayride out to the pumpkin patch. The second we got off the hayride, he started pointing back at the tractor saying "More! More! More! Ride!" (In fact, later that day, when I was relaying the story to my dad, Bodie overheard and took off away from me. I asked him where he was going and he said "More! Ride!" Apparently he thought the the tractor had followed us home. Poor guy. Here are some of my favorite pics from pumpkin picking:

The super nice driver approached us and asked if Bodie wanted to sit in the driver's seat of the tractor!
You can't really see here, but Bodie faceplanted into the pumpkins right before we got back on the hayride, so he has dirt all over his little face. 
The Poly game was a different experience. I knew Sierra would love it. This is her 3rd year going and she has been talking about it FOR WEEKS. My mom even got her a little Poly cheerleading outfit (oh my goodness, she looked so cute!):
But Bodie was, well, Bodie. From the moment we got there, when I tried to carry him from the car to the tailgating area, and he started thrashing, pointing at the ground and yelling "WALKING! WALKING! WALKING!," I knew I was in trouble. (For the record, I'm not sure why he says "walking" instead of "walk" but heck, who am I to argue with a toddler who wants to properly conjugate verbs?) He did great during the tailgate, because he had free reign to dig through the food and wander everywhere. But as soon as we got into the box, it was a whole different story. He was up and down, climbing over people, standing on the chair to get to the row behind and then clapping for himself once he had done it, climbing over the divider between boxes to the next box over (requiring a man in that box to lift him up and hand him back to me), throwing food everywhere, spilling water bottles, grabbing pompoms and tearing them, etc., etc. Then, we would go inside where he would stand at the door and say "Outside! Outside! Outside!" and promptly throw himself on the floor melodramatically screaming if I wouldn't immediately open the door and let him roam the halls outside the boxes. Are you getting the picture? Apparently folks, we have hit the terrible 2's...4 months early. Awesome.

Can you say troublemaker???

But the silver lining (and it is a HUGE silver lining) is that, even though he didn't sit on my lap for more than approximately 2 and 1/2 seconds at a time and wore me out, his energy is such a blessing. We were there for a total of maybe 5 hours and I don't think he slowed down once. He never showed signs of fatigue, no panting, etc. What an incredible blessing to see a kid with a half a heart have that much energy. As exhausted as I am, I know we are incredibly lucky.
And who wouldn't be lucky to look at faces like this on a regular basis???
So all in all, it was a WONDERFUL weekend and we loved it!!! Thank you mom and dad for hosting us!

And in other news, Bodie passed his first hearing test EVER last week! HOORAY! The tubes seem to be doing their job!

And, in the category of random tidbits you probably wish you didn't know about me and our family, I had measurements taken at bootcamp this week and the instructor literally had to stop and double check in the middle of measuring my biceps. I said "oh well, I carry  my son on my left side, so my left side might be a little bigger than the right." Uh...try an inch bigger. (That's kind of a big difference on something as small as a bicep.) Apparently all 25 1/2 pounds of Bodie are wearing on me. Thanks a lot big guy. :-)

Tuesday, October 4, 2011

The sisters of my heart

This past weekend, I had the.most.amazing.opportunity. I had a chance 1) to leave my children for the first time ever and 2) to get together with my fellow Sisters by Heart board members. This past weekend was our official "Board retreat." (But let's start this off right by clarifying, right off the bat, that NO Sisters by Heart funds were used to pay for the retreat - partly because it wouldn't have felt right, and partly because, well let's face it, we just don't have that kind of money. I know a lot of our faithful donors read my blog, so rest assured, your kind contributions were not used to finance a weekend getaway!)

But what a getaway it was!!! For one thing, you have to know I'm not the type of person who leaves their kids for a weekend unless it's for a really good reason. I've only left Sierra twice in her 4 years - once, when I was a camp counselor to my sweet 6th grade AWANA girls at winter camp (fun, but given that I was 10 weeks pregnant, and sicker than a dog the whole time, I wouldn't exactly call it a vacation) and the second time, when I was recovering from my c-section delivery of Bodie (which no one in their right mind would call a vacation). And, outside of his hospital stays, I have never left Bodie. So, this weekend was BIG. To have the opportunity to get away from my kids and RELAX and bond with other heart moms was nothing short of incredible!

7 of our 9 board members were able to make it out for the weekend. My parents have a beautiful home out in Palm Springs and graciously agreed to let us crash it for the weekend. A huge shout-out to Bill and Nancy Gerrish for their generosity in allowing us to do that!!! So, the other board members (coming from Virginia, West Virginia, Michigan, Arizona and other parts of California) made their way out here for a weekend of planning, strategizing and bonding. I'm happy to say that all 3 of those things were definitely accomplished!!!

In terms of planning and strategizing, we had a great conference call with the parent arm of the The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) (a collaborative of pediatric cardiology programs nationwide working to improve dramatically the outcomes of care for children with cardiovascular disease) - they were having their conference this past weekend as well, and since we weren't able to send anyone to the conference, they were kind enough to arrange a conference call so that we could meet some of the other parents involved. It's a really exciting initiative!

We also got a lot of packages prepped (let me tell you, the process is SO MUCH easier when there are 7 of us prepping packages instead of just 2 - I couldn't believe how fast it went!)
and A LOT of time spent planning and strategizing where we want to take Sisters by Heart over the next couple of years and in the long run. It was really wonderful to get us all in the same place, both literally and figuratively. I am so excited for everything we have planned and where we're headed! I think we've only scratched the surface of what we can do to help these newly diagnosed moms.

From a purely personal perspective, it's hard to put into words just how meaningful this weekend was. Honestly, if I could have handpicked a group of women I'd want to work with, I don't think I could have dreamed of a group as amazing as these women. It's hard to explain, but we just gel. We just get each other - and work so well together. I have to say it was BY FAR the best Board retreat I've ever been to. We conducted our "official" Board meeting business on rafts in the swimming pool. I don't know that it gets much better than that, does it?

I love these women. I honestly can't remember the last time I laughed that hard. I think I laughed for probably 12 hours straight on Saturday (a touch of it might have been the alcohol ingested during those 12 hours, but truthfully, just as much of it had to do with just who these women are - they are incredibly strong, brilliant, funny and resilient women). I would not wish HLHS on any family, but I am so grateful that Bodie's journey allowed me to meet these women. Something so beautiful and amazing has come of such a tough diagnosis.
I seriously cannot wait for next year's retreat!

I carpooled home with 2 of the other moms (Sara, mom to Townes, who lives 10 minutes away from me, and Laura, mom to sweet angel Gwen (who passed away at 2 months old), who caught a flight out of LAX the morning after the retreat). We dropped Sara off first and it was so fun to watch her homecoming, to see her kids come spilling out of the house with just pure excitement that mama was HOME. :-) My homecoming was no less sweet. My kids did awesome all weekend with daddy, which honestly, surprised us both a little bit! ;-) When I walked in the door, Sierra of course came running to me, screaming "MAMA!", and jumped into my arms for the biggest hug ever. Bodie, on the other hand, was completely different. He came walking as fast as he could behind Sierra, but he did not utter a word. I think he was so stunned he didn't know what to say. His entire body was bursting with excitement - it was like he was lit up like a Christmas tree. I picked him up and he just kept touching my face and looking at me with this wide-eyed wonder and beautiful smile. I think he honestly thought I was gone for good. It was the best welcome home I've ever gotten!!!

I have so many incredible stories I could tell from the weekend - memories made, jokes told, tears shed, bonds deepened. But there is one moment in particular that stands out. On Monday morning, Laura (angel mom to Gwen) watched Bodie for a few minutes while I hopped in the shower. I peaked out the window, to watch her pushing him on the swing and to see him smiling and giggling at her. Just being so silly with her. Although he has gotten better, Bodie still doesn't open up to just anyone, particularly when mommy has been away all weekend. Typically he is much more guarded. But he didn't have any guard up at all with Laura. He just gave her the most radiant smile. It's like all of his barriers were down, like he somehow knew she was safe. I think he connected with Gwen in her and he just knew. She was safe. That's how it is with us Sisters by Heart. These women are my safe place. They are truly the Sisters of my Heart. I feel so abundantly blessed to have these women in my life.