Friday, September 27, 2013

visiting our friends...

Since moving to San Francisco we've wanted to go visit the unit at UCSF where Josh spent a good deal of time.  So yesterday we baked a huge batch of cookies and dropped by the unit.  It was so great to see so many of the friendly faces we grew to love over the years...and not just the amazing nurses but also, child-life specialists, receptionists and social workers.  We love them all!

I think it's been a year and a half since Joshua's last procedure, but it feels like it was just yesterday, its all too familiar.  I am so glad that we were able to have a friendly visit, with no agenda other than saying hello!  I wasn't sure if Josh would have any memories of the hospital but he did. As we walked down the hall & passed a family eating area he said, "Hey mom, that where we ate pizza!".  He was right!

The first person we saw was our favorite nurse of all time, Janet! Just thinking of her makes my eyes well up with tears.  She was really excited to see Josh & told him about when he was a tiny baby.  Janet was our nurse quite often during the Norwood. I tell ya she's the only reason I didn't have a breakdown during that long hospitalization.  When I think of all she did for us I can't help but think of the night before Joshua's Norwood, when the doctors spent the better part of the night trying to get an IV in my newborn baby.  I think as a mother I would have rather been water-boarded the entirety of the night than have any baby lay there getting poked for hours on end.   But thankfully, Janet was there.  Not only did she preform her duties as a nurse, but she also lovingly sang to Josh and stroked his head during the whole process.  To her it was nothing, it's just who she is, but to me it meant the world. It still does.

Another person we were thrilled to see was Beatrix.  She was his child-life specialist and his friend.  There was a time after his most recent surgery that Josh checked-out emotionally.  He wouldn't talk to me, look at me or smile, at all.  It was really hard to see him this way and I just wanted to make everything better for him, but I couldn't.  During that time Beatrix was his friend.  She'd bring him games, toys, books, and new fun things all the time.  She was always an advocate for him & I was always so grateful for all the help she provided while we were there.  It was so nice to chat with her & let her see how well Josh is doing now.

Before we left we had one more stop, the step-down unit.  I was so excited to see Martina, one of his nurses who has treated Josh through all three surgeries and after two of this caths.  Martina has always been a good friend to me.  She is a great nurse, soft spoken, gentle and kind to her patients, but I always loved having her as Josh's nurse because I really enjoyed talking with her.  She asked me yesterday to remind her what Josh's condition was, when I told her she said, "I thought so, but he just looks so pink!".   We heard that from a few of the nurses, they were all happy to see how pink & healthy he looked.

They were also really happy to see the other kids too, they were shocked that "the baby" was so big, and they couldn't believe how big the girls had gotten either!  The girls used to cause quite a stir walking into the unit together, especially during the Norwood, Callie just turned 2 & Abby was 3.  They were just so little and cute.  They filled the air with laughter and happiness whenever they came around!  As we walked into the hospital yesterday Callie said, "Whoa, this reminds me of when I was a baby!" she's always had a great  memory.  Likely she's recalling when she visited him more recently, but so cute.
I'm so glad that we were able to visit with some of our dear friends, my heart is full.  Josh will start being seen at the hospital regularly for his pacemaker, so we'll most definitely drop in more & hopefully we'll get to see others who we didn't get to see this time around.  There are so many people who mean the world to us there & others who have since left. I just can't help but feel grateful to everyone at UC (past and present) who played a role in Joshua's care on any level.

It won't be long until the new Children's Hospital is finished being built in Mission Bay.  I can only imagine how it'll be to have this amazing staff in an amazing facility.  Great things are in store...great things!

Tuesday, September 17, 2013

I blinked and my baby turned 6!

I wish I had more time today to write a lengthy post but we have a lot to do today to celebrate Josh!  5 was a tough year for Josh, but looking back, he sure learned a lot during his 5th year.  Here are a few things that come to mind:
He mastered the monkey bars (huge deal in every boy's life!), he became an even better baseball player (ask anyone who has seen the kid play), he learned to ride his bike (pretty much the second the training wheels came off),  he perfected his karate skills using his brother as a training tool,  he got brave and jumped off the top of grandma & grandpa's pool stairs into the deep end,  he became skilled with a kendama, he learned to do killer handstands (and often out handstands even Callie)! 
Now of course there's the school stuff too, but when you're a 5 year old, mastering the above skills is far more important than learning your letters and sounds.  He may tire out quicker than most kids but he's incredibly athletic & that pesky heart may be able to slow him down a bit, BUT it has no power over his coordination & skill! 

Happy 6th Birthday are such a blessing and a miracle! We love you and are proud of you, buddy! 

Friday, September 13, 2013

Follow up

A few days ago I posted about Joshua's latest appointment.  The doctor mentioned they had seen a potential problem in the echo & wanted to compare it with his previous echo before coming to any conclusions with Joshua's condition.  As it turns out, the leak that they had found in the echo and were concerned with, was a leak that has been there all along.

Josh had a severe leak of the tricuspid valve as a baby.  Dr. Azakie was able to fix it quite well (which is great because valve repairs aren't always successful apparently).   After the repair there was still a "trivial leak" as Dr. Rivera referred to it.  But it's something he's kept his eye on over the years & hasn't worsened.  Our new doctor, Dr. Tyndell, wasn't aware of the leak.  So his communication to me somewhat scared me.  He went into the whole process of leaks and the serious problems they present.  Had I been thinking clearly I would have mentioned the nature of the leak I was aware of & it may have saved me a bit of worry to discuss it further right then and there.  But at the time of our visit Dr. Tyndell wasn't yet aware of the extent of the leak, he was simply relaying the tech's finding to me.
So it was a bit of a scare hearing the 'leak speech' and not yet knowing its severity, but everything is just fine.

I actually sat here the night of his appointment and thought about it...I realized that Josh wakes up at 7am, goes to school for 6 hours, comes home and plays hard until he falls asleep at about 9pm each night.  I had to be logical and not get worked up thinking, "what if?"....he certainly wouldn't be able to keep up if his health was declining again.

Dr. Tyndell also relayed to me that his function actually looks slightly improved from his last echo, so that's always great to hear.  I sure hope we can keep moving in this direction.  To be honest, I keep thinking back to how he was hospitalized the first week of December the previous two years.  It's silly to think it's going to happen 3 years in a row, but I sure hope we can forgo the set back this time around.

In school news...we are really excited, this week one of Josh's buddies from church was placed in his class at school!  I am so relieved with the way this year is shaping up for Josh.  His teacher is amazing, he loves her, he loves school (which I NEVER thought I'd say), he has several good friends at school & he comes home with a big smile on his face everyday!  I know lots of kids have a smile on their face after school, but compare this to last year, it's a miracle.
Good things in store for my boy!

Monday, September 09, 2013


I'm a little embarrassed it's taken me so long to update Joshua's blog.  So much has changed since my last post, I don't know where to start.  I guess I'll start at the beginning....

Jon began working for USCF in May.  He spent his weeks in SF, and came home on the weekends. Meanwhile, I stayed at home in Roseville with the kids as they finished school and we sold our house.   Our house sold pretty quickly, but the process felt very long since I had to keep the house spotless with 4 kids on summer break - while my husband was semi-permanently out of town.  In hind sight the process was seamless and the timing was perfect, but living through it was challenging. Jon's mom was our realtor & she was amazing.  I think I would have lost my mind without her, she was great!

After our house sold we found a perfect little home just south of the city.  We moved at the end of July (thanks to our families & their tremendous help with the process) and had plenty of time to get acclimated with our new surroundings before school began.

Once we got settled in, the only thing on my mind was ensuring the kids had a memorable summer. Poor kids spent the first half of their summer at the mercy of potential home buyers walking through our house with little - if any - notice & then had to pack up the only home they ever really knew and say goodbye to family and friends.  It was pretty hard on them so salvaging what was left of our summer break was really important to me!

Now onto the fun part...
We have just loved our new home town. We are minutes from the city about a mile and a half from the beach and steps away from hiking trails. We feel like we've hit the jackpot living in this small community, so close to so much fun & less than 15 minutes from Jon's hospital.  With so much to do, we've really kept busy going to beaches, exploring hiking trails, camping, fishing, discovering new parks and making new friends.

Except for the fact that we miss our family and friends back home we couldn't be happier at this moment in our lives.  Coincidentally, this leads me to my next topic...Joshua's heart.  I think I've spent the past month just completely letting go of the issues that have caused us stress over the past year and a half.  It's been such a blessing the way our path has lead us to where we are right now & has taught me to always remain faithful even during the most challenging moments.

During the past month I've been able to more fully enjoy my role as a mother and grow closer to my kids and Jon.  During this time I think I've almost forgotten about Josh's condition (well as close to forgetting as you can - you never really forget).  That is until today, when he had his first visit with his cardiologist in SF.  We've actually known his new doctor,  Dr. Tyndell, since Josh was born.  He was Josh's cardiologist while he was hospitalized at UCSF (for all 3 surgeries) and Dr. Rivera was his 'home' cardiologist.  So we felt very comfortable knowing he'd be transferring to a doctor we already have a relationship with & we really like.

Since this was technically Josh's first visit as Dr. Tyndell's full-time patient we spoke at great length about Josh and his recent history.  Several topics came up and after discussing it all I felt somewhat overwhelmed by it all.  I think I generally speak about one issue at a time as they arise, but discussing his whole case felt daunting.  There was one new issue that I wasn't aware of, but the doctor will be in touch with me since he didn't have all of the information in front of him at the time.  We don't know the full extent of the problem just yet. It could be quite serious, but then it may not be too concerning just yet.  Sorry to speak so cryptically, we are praying it's going to work out okay.  In general, things look pretty much the same as they have and so we are grateful for that.

Josh started Kindergarten about two weeks ago and I thought I would wait a few days before I let the teacher know about his heart. Now trust me, if he were so critical that she needed to know day 1...she would have known.  I wanted to let her get to know Josh without any preconceived notions and see how things went.  Her report to me at the end of week 1 was that he's a great little boy and she really enjoys having him in class & he's a good listener.  She seemed surprised I was concerned with Josh because he was pretty well adjusted by this point.  I didn't go into great detail, but I gave the "Josh has half a heart..." speech in a nutshell.  I am kind of on the fence with how much I tell people and when the appropriate time is to pass along that information.  Not that we are ashamed in anyway, nor do we want to hide it, but I don't want him being defined by his heart defect, or being labeled as limited in any way because according to his doctors, he doesn't have any limitations placed on him.  As far as his kindergarten teacher was concerned he was no different than any other kid in the class.  I am really pleased that despite all he's been through & despite the fact that  his physiology isn't ideal, he's able to do normal little boy things and no one knows any different.  I don't know how long he'll be able to keep up, but I'm very happy that he's able to at this point.

I was concerned with Josh starting kindergarten since TK was pretty tough for him last year.  He did well enough, but he really didn't enjoy it.  On many occasions it took strong persuasion on my part to get him out the door.  Thankfully, he absolutely loves Kindergarten. His teacher is phenomenal.  She's been teaching for 40 years, she is a fun, engaging and an experienced teacher who is a perfect fit for Joshua.  After several conversations with her I just know her teaching style and personality will make for an amazing year for Josh.

As a mom, I have to say it makes life much easier sending him to school happy with a smile on his face rather than tugging at  his little hand and easing him through the classroom door and hoping it'll be a decent day.  We really feel blessed with the way things are going for Josh.

Finally,  apologies for the delay in posts to those of you who follow this blog and have been wondering how Josh is doing. We appreciate your love and concern so much & hope you are well!