Monday, April 16, 2012

a little happy news...

At the beginning of the new year Jon & I looked back on 2011 & deiced we were ready for 2012.... 2011 had been a rough year.  Joshua's surgery/recovery & then learning he is in heart failure took an emotional toll.  The first few months of 2012 turned out even more difficult than 2011 and we just did our best to focus on all of our blessings and press forward.  Finally things seem to be turning around a bit.
Joshua went in for his 6 week check up last week and Dr. R finally saw some improvement! Thank goodness. His function is beginning to restore.  We have worked so hard to keep him as healthy as possible because even a slight cold can wreak havoc on his system.  Thankfully, we haven't had as much a a sniffle in our house for months.  Well, that is until last week:(
We let our guard down on Easter Sunday & allowed the kids to go to their church classes & unfortunately Sammy brought home sickness. Rats! So naturally Josh has caught the same bug & he hasn't been feeling too hot. But we are hoping it won't last much longer.
At the appointment the Dr. asked how Joshua's appetite has been. WOW....let me just tell you, the boy never stops eating all day long. I mean it.  And some how he weighs about a half pound more than he did last year at this time. Goodness, were does it all go?  But he's getting taller, so there is some growth, just not as rapid as a kid with a healthy heart.
It's so hard to believe that my boy could be starting Kindergarten next year. Blows my mind.  He'll do another year of preschool and start Kindergarten just before his 6th birthday. I am in no rush to get my boy out the door.
This whole experience with Josh has taught me a lot about life.  We've learned is to find joy in the journey.  Overall Joshua is doing ok, sure his nose is runny & he's feeling a little pooped, but we are so fortunate to know that his heart is responding to the medicine.  These early years in any child's life are so precious and we never forget that thanks to Joshua.
Another lesson that I've learned is to remain flexible and open minded in all aspects of this journey. For example, from the start we were told that Joshua would most likely have oral issues of all sorts, from speech to eating.  Joshua was my earliest talker, that was never an issue.  As for the eating, he was tube fed 100% for 6 months, until the day he decided he was going to eat. It happened that fast. One day we were worried sick over the fact that he never took anything by mouth & the next he was eating like a little piggy.  On the flip side, just when we feel like he's doing great we learn he's in heart failure.  I guess the point is that everything changes, no matter what the circumstance, we've learned not get too comfortable with it.
Joshua will continue to see the cardiologist regularly for a couple more months but if he keeps improving he should go back to his normal 6 month schedule.
Next month Joshua will have his wish granted!!! We will be going to Disney World for a special Star Wars V.I.P. weekend! I get all choked up just thinking about it.  It's so amazing to me that there is an organization out there -and there are people out there- that do this for little guys like Josh. I am so excited for him to live out his every dream!  He asks me every morning when he opens his eyes, "Is it my wish day today?"...I think that he's afraid I'll accidentally forget & he'll miss it all. :)
Anyway, thanks to everyone for all of your prayers and well wishes. We've had so much support from everyone it really has made the harder times more bearable.

8 comments:

Katie said...

So happy to read that his heart function is starting to improve!!! Have a wonderful time at Disney World! Sounds incredible :)

Hetrick family said...

I am so glad you got this happy news. And REALLY happy you are headed to the east coast for all joshie's dreams come true. May I suggest a detour by way of PA on the way home? We would LOVE to have you!!! <3

OLIVIA said...

Rats! Those Primary germs! We're so, so glad that on the whole he's on the up and up though. What a blessing, and what a trip! We are so excited for you!

The Simmons Family said...

He looks so great! What a fantastic update! I love some good cardiac news!

Jenny said...

Great news! So happy to read that things are heading in the right direction for Joshua! Hope you guys have a FANTASTIC wish trip! Can't wait to see pictures! :)

rudysbeat said...

Really excited for you all. We got visited by the Make-A-Wish crew last week so we agree just how moving it is that people do such special things for these amazing kids. We'll be watching eagerly.

Numbers and tests are part of this, but the way Josh looks are also important. He's strong and active and looks so great. Some of our best docs often say that--sure the numbers are what they are, but then you look at the bouncing happy kid and realize maybe the numbers don't tell us everything. Love the active pics of Josh--something tells me that you have to work hard to get him still enough to get a good shot. He must be quite an experience to witness in person.

Go, Josh, Go!!!

Jen said...

So happy to hear this! Hope 2012 brings plenty more good news for you guys! I can't wait to hear about your trip!

The Fiscus Family said...

So thankful for this good news! He really does look great! Have a blast in Disney & I second the suggestion to swing on up to PA :)