Friday, February 14, 2014

So much to say.

Happy Valentine's Day, friends!

We hope that this blog entry finds you all happy, healthy and loved.

It's been awhile since our last blog update. It's been so long that I had to go back and read the last post to remember how much has happened since our last post!

Well, this little man turned two years old!

We celebrated with several little family celebrations because of isolation season...but he still had a BIG time!

And, yes, this cake has dairy products in it because Jude is no longer allergic to dairy! Yay! Strangely, he is not a fan of many dairy products. He doesn't like milk or cheese unless they are baked into food.  So, we've gotten creative and he is still taking calcium supplements.

A few weeks after Jude's birthday we celebrated Christmas...well, sort of. We were hit with out first seriously family illness. Somehow (thank the Lord!) Brian was able to remain well but the kid's and I were all very, very sick. And in the end, Jude ended up with pneumonia. He really struggled for several days and under the close eye of our awesome pediatrician (and some antibiotics) he was able to avoid a hospital stay. We are SO thankful that he did not need to go to the hospital!

So, the photo above is actually a re-creation of what Christmas day might have looked like. This photo was actually taken around New Years Day! 

And our biggest news?

In my last post I shared that we had not been using Jude's g-tube since our visit to MUSC and we've not used it since. And thankfully the Lord has helped Jude grow and gain weight.

And so, at the beginning of this month Dr. Hebra and his team decided that it was time for Jude's g-tube to come out!

The last photo of Jude's tummy with his g-tube! 

Jude was a little nervous because his most recent doctor's visits mean a shot. Jude is still getting Synagis shots every month to help his little body fight hard against RSV if he ever caught it. And when the nurse pulled out the syringe to remove the water from the bubble that holds Jude's g-tube in he totally freaked out! And before we knew it, the g-tube was out. And his sweet sister was by his head reminding him, "No more tubie brother. No more tubie" His daddy beamed. And mommy cried. 

I was a little emotional about that little tube. 
It fed my son when he was unable to eat on his own.
If it were not for that tube, Jude would not be here.
And when we learned about Jude's CDH diagnosis I was terrified that Jude would need a g-tube. 
I refused to believe that it would happen to him. 
But it did. And man, I'm so thankful for that g-tube. 
And I hope he will always be proud of that scar. 
I hope that he will know that the Lord moved in great ways to help Jude learn to eat all of his nutrition by mouth. 

Gosh. We are all so proud of Jude. And so was Dr. Hebra!

After this photo, I asked Dr. Hebra when we would see him next. We've become so used to our visits every six months and I was anticipating that we'd be stretching out visits out to a year. Instead, Dr. Hebra said that we would not need to see him unless we need him! And he added, "I don't want you need me.I only want to see you for happy reasons."

And again I broke in to tears!I think Brian and I each thanked Dr. Hebra a 100 times. 

And even after he left and we gathered our things, I stopped at the nurses desk and asked her to thank Dr. Hebra again for saving my son's life so many times. 

I wasn't expecting this: such a mixture of sadness and joy!

During our visit we also met up with several of our favorite nurses, therapists and doctors. It is always so good to see our friends again. 

It was such a special and emotional day in Jude's journey with CDH. 

Thank you to all of you for continuing to pray for Jude and cheer him on. We are so thankful for all of you too! 

Onward into 2014!