Thursday, October 18, 2012

Day 194

At Jacob's most recent appointment two Mondays ago, his heart looked exactly the same.  I went in hopeful since his fevers had stopped and his cold symptoms seemed to be gone, but his heart hadn't cleared out the fluid yet.  He has an appointment this coming Monday and he will have another echo.  We are enjoying two whole weeks off from doctors appointments!  I call this progress! :)  With his appointments spaced out like this, once his heart heals, we can have his central line removed.  It is coming soon.  I can feel it.  That will be another huge milestone.

Here is all the big news since my last post:

I removed Jacob's ng tube!  A lot of you already know this from my Facebook pictures, but just thought I'd make the news official on our blog.  It made me nervous losing access to his tummy, but it had to be done at some point and his doctor kept asking me about it at each appointment, so out it came!  I'm so proud of Jacob.  The first few days of oral medicines were very difficult for him, but we persevered.  At first it took about an hour for him to muster up the courage to take his 4 weekday meds.  (He takes 5 on the weekends.)  He earned a coin for every medicine that he took, and was also rewarded with a new blue Power Ranger and blue Ninja Turtle.  Now we are done in less than five minutes and all it takes is watching a Ninja Turtle episode to give him courage while he takes them.  My hope is that within the next month, he will be down to 1-2 meds and his multivitamin.  He has done well off immunosuppression, so we can slowly start peeling off his prophylactic medications.  The other issue with no ng is Jacob has to eat and drink enough on his own.  He continues to do well with both. :)  Here is Jacob posing after getting his tube out.

The next big news is that Jacob went on an outing to the apple orchards in Oak Glen!  With his doctor's permission, of course, Dan, Judy, Ethan, Jacob and I all drove up on a weekday afternoon and it wasn't busy at all.  We took some pictures (also shared on Facebook), and enjoyed apples dipped in caramel.  It was so fun letting him do something "normal."  Here are Ethan and Jacob at the orchards.

Jacob had his first hair trim since his hair grew back in.  Barber Dan (Grandpa) gave him a little trim around the ears and neck.  He looks so handsome!  Here is Jacob getting ready for his trim.

Lastly, Jacob got to go out to a restaurant for the first time.  I can't even recall the last time he ate a restaurant.  Our family of four, plus grandparents and great-grandparents went out for brunch.  Jacob was so excited on our way there, he kept saying things like "woohoo!" and "yay!" as we were driving there.  It was awesome to see him so delighted!  He loved looking over the menu and wanted to try almost everything.  It was such a fun new experience for him.  I can't wait to show him more of the world he has been missing out on the past several years!  Here is a Long four generation picture.

He is not free to do everything yet.  But as long as we avoid crowds, he can start venturing out a little more as he moves further out from transplant.  The doctor said now that he is past 6 months, we can begin with some of his immunizations again.  I thought he had to wait a year, but as I was going through some of my literature from Seattle, they do say that he can begin with some of them after 6 months.


Jean Arnott said...

I would ditto Jacob's "woohoo!" and "yay!" He's got it exactly right! You have kept such a meaningful journal of this whole experience. What a blessing it will be to Jacob and how interesting and special it will be when he can add his own thoughts of the experience. We are so happy and grateful that you've gotten to the "woohoo!" part.

Alice said...

Wow! What a progress :) J looks so good. Hoping, praying for continued recovery to perfect health :)