Wednesday, November 7, 2012

So much to say!

Hi friends!

Wow! I can't believe that nearly a month has passed since our last post! Thank you for being patient with us. I know that you are eager to hear an update on our little man.

First, I must tell you that I will have to share some of our most recent pictures with you in another post because I left my camera with a friend a few days ago. But do not worry! Pictures are coming!

So, since our last post Jude has been trucking along. He is making some progress with his physical development. He is stable with sitting and reaching while sitting. He rocks when in a crawling position and has done just a little bit of pulling up. I'm not sure if our little guy will actually crawl (Annabelle did not do much crawling either. She rolled around most of the time and then just started pulling up before walking.) and he may just go straight to cruising on furniture.

Jude is pretty much in the same spot with  his oral feeds right now. We are feeling a little "stuck" but we also know that each day...each little taste...each mealtime at the table with our family is a step in the direction towards eating by mouth. Please keep praying for our little guy's desires to eat by mouth. It WILL happen. It will be on the Lord's and Jude's timetable!

So, in other news:
A little more than three weeks ago, Brian was given the opportunity to return as an employee to the place where he worked before (and for quite awhile after) Jude was born. We were so excited that the Lord opened the door for a way to return back to our home in Greenville and for Brian to return to work with a wonderful group of people.

But we were also sad to be leaving my (Rose's) family in Florence. Nana and Papa Jack (and all our kiddos Aunts, Uncle, cousins and Gee Gee) had become such a special and close part of all of our lives. We clearly know that the Lord completely ordained for us to be back in Florence for the last several months of our journey. There is simply no way that we could have made it through without their direct love and support.  What an amazing blessing it was to be surrounded by family who have always cheered us on (and prayed without ceasing).

But the longing to be "home" in Greenville never truly left our hearts. You see, when we were pregnant with Jude (and for most of his hospital stay) we had always envisioned bringing our son back to our little house. We imagined introducing him to our neighbors, bringing him to our community group, showing him off to Brian's co-workers, having him loved on by my MOPS buddies, sharing him with our church friends....but the Lord's plan looked different than ours. And Florence was the right and good place to be after Jude's discharge from the hospital. And again it was the right and good place to be when Jude had to be re-hospitalized for his 3rd reherniation. The Lord's mighty hand was certainly leading us *exactly* where He knew was best.

So, when given the opportunity to return to Greenville (and with Jude's health improving every day) we began talking about the possibility of returning. We prayed. And talked. And prayed and talked some more. We shared our thoughts with my parents and siblings...and asked for their prayers too. We asked our closest friends to join us in praying too. And the Lord opened the door for us to return. And, our house had not sold!

Brian interviewed for his now current job and within days they offered him the position. We moved back into our little home on a Saturday and Brian started work on Monday. It was quick. But it was so good.

Brian and I continue to have moments of overwhelming praise and awe over the journey for our family and Jude over the many months that have passed since Jude's diagnosis. Our faces are continuously covered in tears of joy during little moments spent back in Greenville...at home...

Watching our children play together. In Jude's room. Jude's room, where we weren't sure he would ever be.

Lying in bed remembering the nights spent in our bed with tears and prayer. Over our son's life. Who is now sleeping in his crib. Right down the hall.

Sitting at our table in the kitchen. Enjoying a meal provided by our closest friends. Who prayed daily. Sometimes hourly.

Seeing the joy and tears of people who have loved Jude from the moment they heard about him. Watching their eyes as they see themselves the miracle the Lord has given all of us.

And lastly, baptizing Jude at our church in Greenville...
One Sunday after we were given the news of Jude's life threatening diagnosis there was a group of babies being baptized in service. Brian and I held hands and sobbed through the baptisms. (I hope the parents of those children don't remember our crying. How awful of us!) We wanted so badly for the Lord to spare Jude's life and provide a way for our son to be baptized and loved on by our home church. We prayed consistently that the Lord would answer our prayers to have our son baptized in front of our church family and friends.

And this past Sunday, the Lord answered our prayers. A-men! What an amazing day!

My heart is still so FULL from that day. The Lord is good. Praise him forever. I am so thankful that he heard our prayers and gave us the desires of our hearts.

(I have pictures, but they are on my camera....I will post them as soon as I can!)

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Since we've been home Jude started throwing up a little bit. Just a tiny vomit every few days. But it was enough to scare us! 

We thought that Jude should be unable to throw up because he had a Nissen. So, we were totally freaked out that something big was wrong again. We've been so nervous for our little guy but he seems perfectly happy and normal despite the occasional vomit. He hasn't been showing any signs that anything else is bothering him.

So, yesterday I took Jude down to MUSC for his 2nd follow up appointment with Dr. Hebra and the surgery team. We had an x-ray completed before the appointment to check on the status of Jude's diaphragm.

My sweet Mama tagged along to the appointment with Jude and I so that I'd have some extra help (and so that she could catch me when I fainted in the event that we got more bad news). We had an overnight stay and celebrated my upcoming birthday with a nice dinner and a little shopping. I'm so lucky to have my mom!

Anywho...

Doctor Hebra walked into the exam room and told us that Jude's x-ray looked great. "In fact" he said, "it looks better than the last one!"

Wow! What wonderful news! I almost did not believe him!

We also talked about Jude's occasional vomiting and  Dr. Hebra and the surgery team explained that sometimes kid's reflux is so severe that the Nissen alone will not totally resolve it. Over the last several months the hope was that Jude could be free of reflux medication but it appears that Jude is one of those kiddos who need a little extra medication to manage their reflux despite having a Nissen. Things should hopefully improve even more as he grows and gets moving as a toddler.

So, in the next few days Jude will start a new medication to help manage the reflux that is hanging on. We will continue with the medication for 3 weeks and if the vomiting continues then we will add another medication. Please pray that things improve!

Right now the plan is to see Dr. Hebra in three months (unless something happens) and at this point there will be no reason to do an x-ray before our appointment. Please join us in praying that Jude's patch will continue to hold and that his scar tissue will form and create a strong hearty faux-diaphragm that will hold for years and years to come.

Thank you for continuing to remember Jude in your prayers. We are so thankful that so many of you have continued this journey with our family. It is so hard to believe that in a month Jude will be 1 year old! We wish that all of you could celebrate with us! But since it is cold/flu season we will be limiting our celebration to family. However, please plan on joining us in the Spring for a celebration. We want you all to have the opportunity to meet the little miracle you've been praying for!

Speaking of cold/flu season...my next blog post will tell you all about how Jude (and our family) will be spending the winter months. Please pray for us during the next several months of isolation.

And finally, a few pictures of Jude and Annabelle celebrating Halloween in our neighborhood! Happy Halloween from the princess and her frog prince!









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