a few more days...

 

In a couple of days we'll load up the car & head to UCSF, unsure of when we'll return. We're hoping to fall within the 'typical' 7-10 days, but we learned with the Norwood & Glenn that it doesn't always work out the way you hope.

The past several days we've been busy getting our lives in order so that family can slide into our place & take over for us. Jon & I will take Joshua to UCSF, & my family will take over our typical family/home responsibilities.  Its hard to imagine life goes on for the rest of the world, as we face this trial.  But to be honest, we feel encouraged as we enter this phase of the journey.  

Again, we are endlessly thankful for all of the help, the kind words, the prayers. I'll do my best to update the blog as things progress. I may not get to post substantial updates, but I'll do my best to keep the blog current.

**Thanks Carrie for snapping the cute picture :)

giving thanks

Well here we are, about a week away from surgery. The time has passed by so quickly, as I knew it would.
I had been feeling pretty well prepared for surgery, but I realize I still have a lot to do.  Josh is still over-the-moon excited to go to "Sam Francisco"...he is convinced Dr. Azakie is turning him into Ironman. I've told him otherwise, but he's pretty sure he's going to wake up post-op "red & flying!"...his words.
I'm happy that he doesn't have anxiety leading into surgery, although I don't want to mislead him, so it's a balancing act.

I wanted to say thank you to those of you who have been eager to help us through this process. I can't even keep track of all of the offers we've had to babysit, cook meals, drive to-and-from school, etc. We appreciate it so much. We feel very loved. Last night we had a beautiful plate of cookies dropped off at our house from some of the girls from church. It was incredibly thoughtful & very much appreciated! We are blessed to be surrounded by such caring friends and family! Thank you all!

Lastly, Joshua's best buddy recently gave him this awesome Play Mobile set:

It's so cute & Josh has had SO much fun playing with it! Such a thoughtful gift! We are beginning to feel spoiled!

 

As always, we so appreciate all of your kind thoughts and prayers.  We've definitely felt lifted by prayers preparing for next week. Thanks:) 

Second time's a charm?

 

We're giving the Holter monitor another shot! Last time it stopped recording six hours into the test. Hopefully this time we'll get 24 straight hours recorded. Wish us luck!

Happy Heart Day!

 

3 year Glenniversary - CHD week

Three years ago today, Joshua had his 2nd open heart surgery. He was 5 months old.  He had a rough recovery, but as soon as he was 'out of the woods' he thrived & never looked back! I am amazed daily by how normal a life he leads. People are always surprised to learn about his heart defect (if they ever learn of it at all). In fact, think many people don't realize the severity of his defect because he's doing so well! 
We are incredibly blessed to have Joshua in our lives. He has changed our lives for the better. We have learned so many life lessons that we otherwise may not have. 
We found out of his heart defect during pregnancy. We had many worries about  his quality of life. We wondered if the majority of his life would be spent in pain, dealing with sickness, hospital stays, medications, learning delays, feeding issues, etc. While we've experienced all of the above in small doses, in general Josh has exceeded our expectations. Sure we've had hard times, but overall his life has been a really rewarding journey.
We would do it all over again in a second.  It isn't always easy, but it has always been worth it! 
On a side note - surgery is 3 weeks from today. I'll start requesting prayers now! :)

Getting set...CHD week

 

Last week was the Holter monitor & this week it's the dentist. Joshua got a good report yesterday...no cavities!!! Hip hip hooray, thank heaven for that! So we have yet another appointment checked off our list. Today Joshua said goodbye to his gymnastic classmates & teacher. We are officially on lock down, no more church class, no more gymnastics, no more playdates. We have 3 more weeks that we HAVE to stay healthy. That's right, surgery is in 3 weeks!

In that time we have a couple more things on our to-do list, but we are getting there. As surgery draws nearer we are feeling very encouraged, but have moments of anxiety every now & then. Luckily they are just moments.  

I have decided that I will donate blood for Joshua's surgery, we have the same blood type. My dad is going to as well. Joshua has been the recipient of countless units of blood, thank heaven there are willing donors! I am going to make an effort to give blood more frequently since we have directly benefited from others who made the sacrifice. In honor of CHD week you should go to your local blood bank & donate too! You never know who your blood will help or perhaps even save!

CHD Awareness Week

This video is pretty awesome! It's a story of a little girl with Joshua's same diagnosis. My favorite part of the video...it features UCSF, our AMAZING surgeon, Dr. Azakie  & one of our very favorite nurses! They feel like family to us, it's really cool to see them recognized in this way!

Holter Monitor - CHD Awareness Week

 

Joshua wore the 24 hour Holter monitor this past Friday-Saturday. I was a little concerned about the whole thing, but it went very well. I always have expectations that things aren't going to go smoothly, and I always realize that I under estimate my boy. He loved wearing this thing! After it was place on him, as we headed for our car, he sang, "I am a lucky boy, I am a lucky boy, I get a new cell phone!" (he loves to sing & has the funniest little singing voice:)

I suppose it's all perspective. He thought it was pretty cool...fine by me!

Although I won't be surprised if he has to start all over & wear it again because I caught him pushing buttons on his "cell phone" and suddenly the screen changed on the device. I'm pretty sure he reset it.  But hopefully I'm wrong & they have usable results.

On another note...today is the first day of Congenital Heart Defect Awareness Week.  I wish I had time to write a thoughtful CHD post each day this week, but I don't right now. And maybe some of it has to do with the fact that surgery is on the horizon & I don't want to remember the seriousness of Joshua's condition just yet.  I'll have plenty of time to live that reality in March.

There is such a push to spread awareness because CHD's are the #1 birth defect. In fact, CHD's kill more children than all pediatric cancers combined, yet gets 1/10th the funding. The medical community has made great steps with limited funding. Imagine what could be done with real research money! The first step is spreading awareness!

Picture day...

 

This week in gymnastics the kids had their official gymnastic pictures taken. Before class I pulled out my camera for a few practice shots. Umm, lets hope the photographer did a better job than I did!

My view of the pictures they were taking was from the back. They could be a disaster, but lets hope for a pleasant surprise!

This week...

 

This week Joshua is going to wear a Holter monitor for 24 hours in preparation for next month's surgery. I'm hoping it'll go well, but you never know with a 3 year old boy...he may decide it's not so much fun being attached to a device after a few hours. I'm going to have to remind him that he's Ironman. We've gotten away with a lot by telling him he's Ironman! Hopefully it'll work again.

On the drive home from UCSF, after having his cath last month, Josh shouted out, "Wait, I didn't get to play in the play room, OR see Dr. Zakie!" I think he was hoping that Jon would flip a U-ey right there on I-80, tires screeching. So naturally, he was thrilled when we told him that we are taking him back to "Sam Francisco" in March.  Of course he doesn't realize what this trip to UCSF entails. As surgery draws near, I will talk to him more about what to expect. I know him well enough to understand what he's ready to hear & when he's ready to hear it.

I am very lucky that he has no negative memories associated with hospitals, doctors or nurses. That's not to say he hasn't had any negative experiences, because after all he has undergone 2 major open-heart surgeries, surgery to repair his diaphragm & pacemaker surgery, requiring two 6 weeks stints in the hospital.  And even after all that, my sweet boy is hopelessly excited to go back. We'll just ride that wave as long as possible.  We know that it will crash ashore inevitably. 

But in the mean time, we'll continue enjoying his cute prayers that go something like this:

"Dear Heavenly Father, thank you for this day, please bless the food & please bless Sam Francisco. In the name of Jesus Christ, Amen."

Whether we are waking up, eating, or going to bed he offers the same prayer. I love my boy.