Monday, February 25, 2013

Waving goodbye to February

Hi friends!

Welcome to the end of February! We are thrilled that we are nearly rounding out cold/flu/RSV season! Jude's official "coming out of isolation" date is scheduled for Easter weekend!

We are excited about the end of isolation! And we are well...I guess we are also really nervous. Technically, Jude has really been in isolation since he came home from the hospital (for the first time) back in June. So, as you might expect, we are ready to share our little man with the world! But we are nervous about what the world (more like people and their germs) will share with our Jude. So, please bear with us as we ease back in to normal life again. We will still be washing our hands and sanitizing more than the average family does but we hope to get out and enjoy the joys of warm weather, friends and family! We will take it one day at a usual!

So, here's what we've been up to since our last post:

- In early February we made a little trip down to MUSC to see our favorite surgeon, Dr. Hebra, and his awesome team. Jude's appointment went wonderfully and Dr. Hebra was all smiles. It is such a blessing to be on this side of such traumatic surgeries for Jude. I don't think Brian and I will ever forget the grave conversations that we had with Dr. Hebra during Jude's stay at MUSC. And it is because of those moments that a smiling Dr. Hebra makes our hearts glad. He celebrates with us!
So, according to the surgery team Jude looks great. No need for x-rays at this point because Jude looks good, feels good and is thriving! They were pleased with his size and weight gain...and also happy to hear that Jude is not throwing up anymore! (Three cheers from mommy too! More on that later) At this point, the plan is to see Dr. Hebra and the surgery team in 6 months!!!! 6 months?!?! That is by far the longest amount of time that we've been away from MUSC! Praise God for making it so!

- So, back to the throwing up. I'm not sure if I'd mentioned this on the blog or not but for several months Jude has continued to throw up every single morning in the middle of his breakfast feed. And it just broke our hearts. We tried everything....slowing the rate of his feeding pump....decreasing the volume...venting his g-tube....changing when we gave him his reflux medication......etc. And finally one night we decided to stop giving him his evening feed (we usually fed him in bed once every evening). And it WORKED. So, since that night we've stopped feeding him in bed and we've increased the volume of his daytime feeds. And it has been AMAZING to watch our little boy live a life without vomit. You have no idea how much it means to see him go through the day without throwing up. He feels SO much better.

- We've been trying out a new plan for encouraging Jude to eat with our awesome OT, Amanda! (We are SO lucky to have her) And it seems to be working. Right now we've been dropping a variety of foods on Jude's high chair tray and encouraging him to participate in family meal time with no pressure. (Before we were trying to get him to eat by  putting food into his mouth....but he hated it and would cry/spit his food out/refuse to participate.) And in the last several weeks he has made GREAT strides with getting involved with his food.
First he was just interested in touching it....then he became interested in feeding us...then he would take a tiny nibble every few days....and now he is physically tasting and trying to eat food (mostly crackers and crunchy things) at every meal. A majority of his "eating" involves putting food in his mouth...chewing...letting most of it drool out....but swallowing a little bit. And you know what? That is PROGRESS. More than we've EVER had before. And we are THRILLED and THANKFUL. And EXCITED! And we'd love your prayers for more steps towards oral feeds. We know Jude will get rid of his g-tube one day with the Lord's help.

- In more digestive news: We've officially started introducing Jude to real foods through his g-tube. Preparing food in a blender and feeding it through a g-tube is often called a blended diet or BD. In the last month or so we started adding a little baby food to Jude's boluses of water to expose him to real foods and to see if he had any allergies. After that, we started blending food in our Blendtec blender (which is A-mazing....another post on that coming soon) and giving a little bit to him at each meal. It has gone beautifully and we are thrilled that his digestive system is enjoying real food! (And his nutritionist is on board with our plan! Whoopee!!!)  I'm convinced that he can taste the goodness of real food just a tiny bit in his stomach. And I think the BD has someone given him a greater desire to taste real food. I know that sounds crazy...but I really think it is helping.

- Jude got a little cold (first one this season) that lasted a little more than a week. We were thankful that it did not travel to his lungs and that it did not turn into anything major!

- Jude isn't walking yet...but he is SO SO close! His PT Kacie is phenomenal and Jude loves her! He has simply "taken off" in the last month or so with his physical abilities. We are so proud of him and certain that he will be walking soon!

Thank you for your continued prayers for Jude. We continue to worry about re-herniation and bowel obstructions (both are still possible) but we are going to live, celebrate and soak up the beauty, love and joy that the Lord has given us. Brian and I were talking this evening and we realized that Jude is about to pass another milestone. Soon he will have been out of the hospital longer than he was in the hospital. Praise God for his good works in our son's life. What a journey!