Birthday fun and Ninersmania!!!

Josh celebrated the big number 7 last week and had such a great time!
It was like fate that the 49ers Youth Football program came to our school and put on a training camp for "7 and older" 2 days after Josh turned 7!  The stars aligned.
The training camp was such a blast for the kids and Josh was such a little stud out there.  I think since he's about the size of a 4 year old people just don't expect too much out of him, but he so coordinated and has so much agility he surprises everyone!  It was a really special day for Josh to be a part of an official 49ers event because he's a huge fan!
It was kind of funny, when the Niners truck pulled up all of the kids raced over to it & they all expected Kaepernick to climb out of the back.  These kids were more excited for this truck to arrive than they would be if Santa pulled up in a sleigh full of gifts....really!

It was so good to watch Josh run and play football with a huge smile on his face, without a care in the world.  It was as if all his dreams came true that day.  I couldn't help but feel so much gratitude for the 49ers program.  Watching him just be an ordinary kid (with some crazy good football skills:), I thought back to our visit earlier that week at Stanford.  As I watched my boy laugh and throw passes and I had so much peace knowing that despite his heart and the fact he must feel pretty yucky inside, he doesn't let anything stop him from enjoying his life.  He's such a good example.

Now onto his Birthday...we went to my parents house this weekend to celebrate with family.  Since Josh is a huge Niners fan he of course wanted a Niners party.  He had so much fun playing football with his uncles and cousins.  He was a lucky boy because we were connected with an organization called Icing Smiles.  Icing Smiles put us in contact with an amazing baker, The Cake Boxer, here in San Francisco.  The baker created an amazing cake for Josh!  It was definitely a highlight of his birthday!

People ask all the time how Josh is doing.  Overall, I have to say he is doing well.  His vomiting has lessened (only about 3-4x a week) and he's in good spirits.  If you read my previous post you know he's not doing well on the inside.  But it sure goes a long way when his quality of life is still good.:)

Stanford

It's been quite some time since I've sat down to update.   Mostly we were busy having fun this summer and I didn't want to take the time to sit and process all that's been going on with Josh.  I think part of me avoids posting because I'm forced to really think about the seriousness of his condition when I write it all down (or at least the information I'm willing to share), and its much easy avoiding it.
Really, it's not all doom and gloom, but honestly our first visit to Stanford was very difficult.  To keep it simple I'll just say that the cardiologist explained in broad strokes what the process of transplant looks like.  It's not pretty.  It's not easy.  It's scary.
At that initial visit, I spoke with the doctor and nurse practitioner at length about Josh's history & his more recent symptoms.  They laid out several tests that they wanted preformed to help us decide whether or not transplant is a viable option.  One of those tests was a cardiac catheterization.  He had the cath in July & it went pretty well.  But the results showed some troubling findings that confirmed Josh's heart isn't doing very well & the long term expectations are very low.
That being said, today I took Josh back to Stanford to further discuss his case and the results of all of the testing he's had done in regards to transplant.  It's pretty clear that it's no longer a matter of "if" but "when".
It's taken me several months to wrap my mind around the initial consultation with the heart failure team & I'm feeling as ready as I ever will to begin the transplant process.  Lucky for us, Josh has a high quality of life right now so this process can happen at a somewhat leisurely pace, which we much prefer.    
Since before he was born we knew his heart condition would lead to transplant, we just never knew when.  We had always hoped it'd be when he was an adult, but it seems he'll be ready much sooner.  We still don't know exactly when his day will come, but know it's nearing.
Anyway, on a much happier note, tomorrow is Josh's 7th birthday!  We are incredibly blessed to be celebrating 7 years with him...something that was never a guarantee.  So despite our bummer situation, above-all we are celebrating our wonderful little boy and his awesome life!!

(I'm dumping some photos into this post since I'm not so good about regular posts.)

This week...

Still haven't haven't gotten Josh in at Stanford yet, but we were told it'd take a week or two.  This week Josh needed a lot of encouragement to do things he normally likes to do.  I'm not sure if it's another symptom of poor heart function, or if it's just end of the school year burn out.  His teacher is so good, she's very in-tune with his energy level, his temperament etc.  She keeps such a close eye on him I know I don't need to worry about him while he's at school, because she's so on top of it!  She's been such a blessing.  I swear, sometimes I think we ended up moving here simply because she was destine to be in his life, she's been such a positive influence on him, there are just no words to properly thank her.  This is the first year (of the 5 I've had kids in school) that I kinda don't want school to end...that's how much we love her!
Anyway, besides needing an extra nudge to do things, Josh has also held his chest and said it hurts several times this week.  It hasn't been too extreme, mostly seems to just irritate him, but it makes me more anxious to hear what the specialist at Stanford think.
As I said before, I'm going to do better about blogging so those of you we don't see much anymore can still know what's going on.

 Josh & Sammy with their best buddies:)

Heart update....

On Thursday I took Josh to see his cardiologist because he's been experiencing some new symptoms the past few weeks and we wanted to be sure there was nothing new going on inside that little body of his.   We were lucky to have been squeezed right in & Josh was able to get all of his ordinary tests done, except his pacemaker check which is  coming in a couple weeks.
The results were pretty similar to his previous results, but his echo looked just slightly declined.  Given the new symptoms, Dr. Pererra decided to refer Josh to the Lucille Packard (Stanford) Heart Failure Clinic.  Josh is in heart failure (he actually has been for some time), and Dr. Pererra feels it's time he's seen by the heart failure specialists.  This is the team that will ultimately decide if and when he's ready for transplant.  They will determine his treatment plan & will do their best to get his heart is the best shape possible.  In addition, Josh will begin seeing Dr. Pererra every month.  It's easy to forget how severe his condition really is, until times like these.
I know I should be a nervous wreck right now, but I've known for a long time that things aren't going too well for Josh & I feel like this is what he needs.
Overall, Josh has been in good spirits and is really loving school and life in general.  In the past when his health has declined his mood was terrible (because he felt terrible) and he seemed sad all the time, not the Josh we know.  We feel encouraged that he's happy and the same ol' kid despite his health issues.
I'll do my best to keep this blog updated with the latest.  I haven't done so well lately, but I'll do better!

Spring time....

Well it's about time for a post!  Josh is nearing the end of Kindergarten, and as much as I long for summer break, part of me is really sad for this school year to end for him.  He's done so well and has learned and developed so much, thanks to his amazing teacher and his very good friends.

This year at our new school we were really excited to learn that the kids could participate in the Junior Olympics.   The city holds community track meets for all of the schools in the district, and my kids were eager to participate.  For about a month and a half they practiced after school, training for their meets and I helped out with the coaching.  It was really fun for all of us.

I didn't know how all that running would go for Josh but told him to walk whenever he was tired.   (His cardiologist was just fine with his participation.)  He's such a competitive little athlete that he never wanted to walk, but it went fine for him.  He really kept up well, however in the evenings he was clearly much more tired than normal.

By the time the meet came around Josh was so excited for his big day, I was also excited but full of a wide range of emotions on his behalf. :)  As I watched the little guy put his toe to the start line, I started crying; tears of happiness, joy, maybe even a little sorrow that his whole life has been a scary race of sorts.  But overwhelming pride was what really filled my heart.

The best part was his huge smile as we met after his race.  He said, "Mom, I got last place and I didn't even cry!".  He's so funny.  It was a really great experience for us and we look forward to doing it again next year!

I don't think I posted about Josh's last cardiologist appointment.  Josh has a new cardiologist since Dr. T retired in December.  I was a little nervous about the idea of having someone totally new take over his complicated case.  However, we feel really good about our new doctor.  I feel like she's very proactive and listened to me thoroughly.  She has some concerns about Josh's function and some other things as well.  She wasn't terribly optimistic upon seeing his echo, but I'm happy to have some fresh eyes take a look and make some changes that are hopefully helping the situation.

We'll go back to see her pretty soon, we've been on a 3 month visit routine for a while now.  But even with the frequent visits, and the amount of meds Josh has always taken, its so easy to dismiss the complexity of his condition.  Day-to-day he does very well.  Lately he's been vomiting quite a bit after he eats, which is concerning because it's a sign his heart is functioning poorly, but even so, he just goes right back to running around and wrestling his little brother.  We're really happy with his quality of life, and that's all we can really hope for with  HLHS.

Another Anniversary & Congenital Heart Defect Awareness Week!

Today marks 6 years since Joshua underwent his second major open-heart surgery.  Six years!  In many ways it's hard to believe it's been so long because I remember the experience vividly.  I remember thinking that I'd already done this before, so this time I'd surely be stronger.  Wrong.
Once I was told surgery was over there was a huge sigh of relief, a weight lifted from my shoulders, all was well with the world!  But then when I saw his little body, carefully put back together, badly swollen, I knew my nerves were no match for the pain I saw on his sweet face.  I'll never forget walking into his room and internally having a mini panic attack, but not wanting to get kicked out of his room while he was made comfortable, I did my best to stay calm.

As a mom you have no choice but to swallow those very tender emotions, pull-it-together and carry on.  We spent 6 weeks in the hospital as he slowly recovered.  During those 6 weeks it was determined that he needed a pacemaker to ensure his heart rhythm stayed consistent, and he ended up having yet another surgery during that hospital stay.  All this and he wasn't even 6 months old yet.  Welcome to the world, little guy!

Looking back, I'll admit I had moments when I'd see other moms with their babies and feel so sad at the "normal" moments Josh and I were missing out on.  Simple moments like holding my newborn in my arms, snoozing together on the couch, bathing him, trying new baby clothes on him, going on a walk to the park, going to church and showing off my cute new baby.  There are so many "normal" moments that we missed, too many to list, too many to even realize.

Honestly, those thoughts have (and still do periodically) cross my mind, but the thoughts that more frequently occupy my mind are thoughts of gratitude.  I have so much appreciation for Josh and all that we've experienced.  I have so many sacred memories of the joys and the pain, I wouldn't trade them.  I also really appreciate how well he's done over the years.  There is not a child with Hypoplastic Left Heart Syndrome who doesn't have their own unique challenges, I feel like our challenges (though difficult) have been bearable and have taught us many lessons.  The perspective that we have thanks to these experiences is priceless.  Sure, these are lessons I wish I could have learned in an easier way, but I'm grateful for the perspective.

Today's anniversary just so happens to fall on Congenital Hear Defect Awareness Week.  In general I don't recount these events often because it's hard.  But this week I always like to do what I can to make people aware of the astronomical number of children born with heart defects & the need for more research and funding.  I'm partial to UCSF because they are miracle workers and have helped give Josh a very high quality of life.  We have been part of countless studies over the years with Josh and I know first hand the good that comes from these amazing people and the work they do.  So if are in a position to donate to a worthy cause, please do!  And help spread awareness anyway you can!

Happy New Year!

Well, as always I'm a little late to the party, but I just wanted to briefly post about the past few weeks. We had such a nice winter break, Jon was actually home for most of it, which was so nice! I don't think he's ever been able to take as many days off just for fun.  In the past when he's had more than 2 consecutive days off it's due to a hospitalization so this was a real treat!
In mid-December Josh finished up a great season of basketball. His final game was full court and boy did he ever play hard! He spent the entire game giving 100% as he always does & sprinted from one end to the next...it was exhausting to watch! I was a bit worried that full court was gonna be too much & he'd end up pooping out half way through the game.  He never did.  Afterward his coach had some very nice things to say about Josh...

                                       

That night he slept very well.  By the next day all that running had caught up to him.  He felt pretty darn crappy and his little body ached.   So we took it very easy for a while.

Over winter break we really had a lot of fun.  We were able to go back home and visit all of our family (well, most of them).  Besides all of the excitement of Christmas Eve and Christmas day another highlight for the boys was the annual holiday football game. Josh and Sam thought they'd get a little more playing time.  There's always next year. :)

This was our first year to spend Christmas away form our home.  It was just as special, if not more, being at Grandma and Grandpa's.

We also took a little trip to Bodega Bay.  Grandpa Steve has a trailer he keeps there and so we're pretty lucky that we get to go stay there from time to time.  We had so much fun!  One morning we decided to go on a little walk before breakfast...a little walk turned into 5 miles!  We didn't get back until after 11am! It was not what we intended but somehow it happened.  I really had no idea we were gone that long since we didn't bring our phones we couldn't keep track of the time.  I can't believe the boys made it that far with out being fed along the way.  They are like puppies and we have to bribe them with treats usually if we expect them to cooperatively hike that far! Good memories!

Here are a few other pictures from December that are worth posting....

Happy New Year everyone!

Good News X3

This has been a week of good news for Josh!

In his opinion the best part of his week was his basketball game. He played really well! There were no subs since only 5 kids showed up but playing the whole game was no big deal. He was just fine!  He had one play that was awesome...he stole the ball underneath the opponents hoop, dribbled down the court and made a basket on the fast break!  I was laughing and crying, everyone was cheering, I was so proud of him!!  He's a fun little guy to watch. :)

He's been loving basketball & I'm so happy he keeps up just fine.  He's really doing well.

Besides the basketball we went to see his cardiologist in the city & got a glowing report!  At the appointment the doctor was satisfied with what he saw on the echo.  We had a good long conversation.  He told me that generally school age kids with HLHS are on much less medication than Josh requires & that they are typically seen 1x a year.  Josh is seen every 3 months by cardiology.   I told him about Josh playing basketball and having no trouble keeping up with the other kids.  He doesn't ever need extra time to recover, he just keeps going.  His cardiologist told me he was very encouraged by this.  He said that Josh can have several tests done to check the function of his heart, but there's no better indicator of his heart's well being than him being able to run up and down a basketball court for 30 min.   He seemed surprised to hear how well Josh is able to play.

Last night I got a follow up e-mail from the doctor and he said he took a closer look at Joshua's echo and he was very pleased with what he saw.  He said that Josh's heart looks incredibly better than it did last April.  He said he could even see improvements from the echo he had in September.  Such great news!

If that weren't enough, today his teacher told me how well his reading is coming along.  She was really impressed with him and told me he's at a beginning first grade level for reading!! I give her all the credit because she really takes the time to teach her students according to their learning style.  She's the best! Couldn't have asked for a better teacher for Josh.  

I've been meaning to write down some things about Josh that I don't ever want to forget.  So here it goes...

Josh is such a funny kid in that he always wants to know the height of everything.  He's really into Mt. Everest and uses it as a measuring stick for most of his inquires.  For instance, "Mom, is the Sutro tower like 50, 000 feet tall? Is it like 50 times bigger than Mt. Everest?" or "How many feet tall is the Golden Gate bridge, like 80 thousand-million feet? Is it as tall as Mt. Everest?".   He's a very curious boy when it comes to the size of things.  His questions are constant, he wants to know about everything, especially things that are particularly tall.  He's been asking about Mt. Everest for probably 6 months now.  It makes us laugh to ourselves every time.  

Josh loves to play sports like crazy.  The minute Jon comes home he want to either throw the rugby ball, the football or hit baseballs.  Everyday.  It's his favorite thing in the world & he's such a coordinated and focused kid.  Anyone who knows him at all knows this about him. 

Josh is also a very neat boy.  You'll never find him with food on his face, hands, or clothes.  He's very tidy and likes thing just so.  He wears a watch on his right arm, a survival bracelet on his left & they never leave his arms unless he's bathing....and then he replaces them before drying off!  He has to have his shoes the exact same tightness.  If the left she is too loose he'll take both shoes off and start over.  He may have a touch of OCD. :)  

He is always my first kid ready for school each day, I never have to remind him to brush his teeth, get dressed, come for a hair-do or pack his backpack.  He just does it all and waits by the door, he's ready at least 10 minutes before the others.   The girls on the other hand...ugh!! 

I can't even begin to contrast Josh today, with Josh a year ago.  The most notable difference is his happiness.  He's finally himself again, the goofy happy-go-lucky boy we all love so much.  I'm sure a lot of it has do do with him feeling much better with good heart function.  It's true that going through the hard times help you appreciate the good times.  I'm not sure I would be nearly as grateful for Josh's circumstances today had we not passed through the past two difficult years.  I thank Heavenly Father everyday for these wonderful blessings.  

Fall Fun

Since my last post a lot has happened for Josh.  He started basketball, went on his first field trip & we celebrated Halloween.  Basketball has been a lot of fun for him.  He keeps up with the other kids just fine.  He's got pretty good endurance which I'm not sure I expected.  He's playing for the Boy's & Girl's club & his coaches are great!  They don't know he has a heart condition, I figure I'll let them know if he seems like he needs more breaks, but since he's doing just fine, I'm going to just let it be.  Watching him play has been so much fun! He's so focused and tries so hard.  It's adorable!!  He played in his first game last Friday & has several more in the coming weeks...I'll have to get some video of his skills.:)

Last month Josh went on his first field trip to a pumpkin farm in Half Moon Bay.  Sammy and I went along too and we had great fun!  It was fun watching Josh interact with his little buddies. He's made some great friends & he's really enjoying school this year.   His friends are such a blessing.  He's got the best little buddies and it's such a relief for me knowing they've got his back. :)

Halloween was so much fun at our new school! The kids got to dress up and do a costume parade.  It was a really memorable day for them.  Josh is real into zombies lately and so naturally he had to be a zombie.  It was the easiest costume I ever made & as soon as Sammy saw it,  he too had to be a zombie.  So my boys were pretty creepy and the girls were pretty cute. 

(These are his two best friends, the football player was a tad nervous to be around Josh I think, haha!)

That's about all that's been going on over here.  Josh seems to be doing well, but the other day I noticed his tummy looked a little bigger than normal.  Immediately I thought, "Great, it's that time of year again." - the past 2 years at the end of November Josh has been hospitalized do to fluid retention and an enlarged liver.  Then he spends the next several months trying to bounce back.  It's been pretty rough on him so I am hoping and praying that I'm just imagining things and that everything is fine.  I'm going to give it another day or two and see if his tummy goes down at all and if not I'll call the doc.  It's not that I don't personally want to spend time in the hospital, it's that I don't want another set back for Josh when he's finally really thriving.  I might just lose my mind if history repeats itself 3 years in a row.  But, I'm an optimist (or in denial perhaps) and won't stress over this, we'll just see how it plays out. 

school and sports...

Last week I was able to meet with the teachers at school for conferences and it seems like the kids are all doing really well at their new school.  They've made friends and they are good students, according to their teachers.
As I was talking with Josh's teacher I realized that he is the luckiest boy to have been placed in that class.  His teacher told me about several of the activities they do daily that really help the children with their fine motor skills.  Last year, I took Josh to an Occupational Therapist because he was falling behind with his poor fine motor skills.  Writing with a pencil was such a chore.  This year, I have seen vast improvement over the course of about a month!  The activities his teacher has the children doing are the exact activities OT did with him.   I told her she may as well have been a trained OT, but she just has so much experience she knows what these little guys need.  He is doing so well and it's all thanks to his amazing teacher.  The areas I really worried about last year don't worry me anymore.  I can see that if we keep doing our part at home, he's going to do just fine this year.
Another concern I've had is more on the social side of school.  I have really worried Josh would get bullied since he's significantly smaller than the others.  I volunteer in the library, I've been to the cafeteria for lunch and recess & we wait for 45 minutes on the playground each day for Abby to get out of school, so I've been able to do a lot of observing.  The first observation I've made is that Josh is always drawn to the athletic boys on the playground & they just so happen to be the biggest boys too.  Josh can really hold his own as he's a great little athlete and no one cares that he's small because he's good.  He really fits right in.
Last week I saw two older boys getting into it after school and Josh defended the kid who needed it.   I was proud of him on a number of levels.  When I asked him what was going on over there he said, "Mom, that boy needed help.", it was that simple.  I don't worry as much about him being bullied after watching him at school because he can handle himself pretty well as far as I've seen.
It also helps knowing that he's got good friends who have his back.  One of his buddies goes to church with us & it's been great for Josh to have him as a friend.  They will be playing basketball together through the Boys and Girls Club in the coming months which will be fun to watch! I just can't wait to see him in the uniform, ha!!
I'll most definitely post lots of pictures!  It'll be his first organized sport, something he's dreamed of since he was big enough to throw a ball.  He's spent countless hours watching Abby play soccer and Callie do gymnastics, finally it's his turn! :)