Thursday, August 22, 2013

Busy boy!

Wow! Is it really August (and nearly September?!?!) already?

Thanks for sticking around to follow our sweet Jude and his progress!

So, the last time I wrote Jude had just figured out his sippy cup and was in the process of mastering a straw. And with a lot of hard work, prayer and help from our amazing OT (Amanda!) Jude is now a skilled drinker! Yay!

In the beginning he really struggled with getting enough volume. He wasn't taking much in and it was stressing this mommy out! So, at the end of the day we'd give him some extra water through his g-tube to "catch him up" on his fluid intake. To be honest, I spent a lot of time stressing about the amount of liquids that he was taking in by mouth. I thought he would never drink enough to sustain him!

But, again, after a lot of hard work and prayer Jude started drinking more. And started eating more liquid rich foods (many fruits and veggies) and it started to look like he might be able to handle this drinking thing on his own. But I was still so, so nervous about him getting dehydrated!

Fast forward to 2 weeks ago: We go for a visit to MUSC for Jude to see Dr. Hebra for a follow up appointment. Dr. Hebra is super pleased with Jude's height and weight gain and tells us to simply stop using the g-tube. He thinks Jude is totally capable of drinking enough and that the important thing to watch is the number of wet diapers he is having. And Dr. Hebra said that he'd take Jude's g-tube out in February if we can not use the tube until then! (Side note: Dr. Hebra asked us to wean Jude's reflux medication because Jude doesn't seem to be showing any signs of reflux. So, in two weeks he will be completely off all medications. Isn't that amazing?!?!)

So, we left MUSC that morning and haven't given Jude a single "catch him up" bolus of water. And you know what? He has done just fine! He drinks enough to have plenty of wet diapers and we are just SO proud!

Additionally, shortly before the visit to MUSC our sweet OT was able to discharge Jude from feeding therapy! I think my facebook status sums this up pretty well:
"Yesterday was a day that we thought would be years away. Yesterday was a day that I was certain we would all fight hard for. Yesterday used to seem like an eternity away. But what happened yesterday came much sooner than I expected. Jude was officially discharged from occupational/feeding therapy. We can only give praise to our Lord for the unbelievable progress that Jude has made in his eating journey. I'm pretty sure we all thought he would be facing feeding struggles until he was a pre-schooler. And miraculously it only took him 19 months to learn to eat like a healthy kid. The Lord is good. And we thank Him for making Katy, Elecia and Amanda (all Jude's feeding therapists during this journey) a part of his life. Thank you for loving on our little guy!"

And yesterday?
Jude was discharged from physical therapy!!! And again, HUGE thank you to our outstanding physical therapists that the Lord placed in Jude's life during this part of his journey. We are so thankful for Susan, Shannon and Kacie!!

Jude is completely finished with all of his therapies! WOWEEEE!

So, the Over the Rainbow celebration was such a great day! We were surrounded by so many sweet friends and new friends who had prayed for Jude and our family over the last several years. It was so amazing to celebrate and enjoy the evening with everyone. There were musicians that shared their talents with all of us and truly set the stage for a night of remembering the gifts the Lord had given us! Thank you to everyone who joined us! It was such a reminder of how the Lord surrounded us with the body of Christ during Jude's hospitalization. 

Jude, Daddy, Mommy and some of our favorite nurses and therapists at the Over Rainbow celebration!

We've had a busy summer too! 
- Jude and Annabelle enjoyed the zoo with us and their Nana Beth and Papa Jack
- Celebrated the 4th of July at the lake house with all of their cousins
- Had playdates and pool time with our neighbor buddies
- Enjoyed some time at the beach before Jude's appointment at MUSC
- Celebrated Annabelle's birthday....which by the way included the meeting of two very cute CDH super heroes! 

Leslie, Bonnie (a.k.a. Baby B), Jude and Mommy