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

A Normal Day?

This morning, I woke up and dropped Annabelle off at her little pre-school summer camp.

Brian was off work and we decided to take Jude to his first toddler friendly program at the library.

Jude had a tantrum and lasted only 5 minutes. So we left.

We had some free time so we went to the mall. Got Jude a little cookie and strolled around.

Jude ate his whole cookie and took several gulps of water.

After strolling for awhile, we had an early lunch. Chic-fil-a.

Jude ate 4 chicken nuggets and countless french fries. Dipped in generous amounts of ketchup.

All dipped by Jude himself. Oh, and more water.

Then we picked up Annabelle from camp. And Jude joined his sister in plenty of laughing on the way home.

And now he is taking a long, hearty nap.

Today is June 26, 2013. 
And I LOVE, LOVE, LOVE that today felt like a normal day.
With a fussy kiddo who couldn't sit still at the library.
And a meal with my husband and son.
And my son ate and drank food by using his mouth.
And he sat in his car seat and laughed with his big sister.
And he slept in his own bed.


On June 26, 2012 this is what we were doing:

 Riding the elevator down on Jude's discharge date.

Some of our favorite nurses holding up a goodbye sign for Jude.


It sounds strange...but I kinda feel like June 26, 2012 was Jude's 2nd day of birth.

On that day, we really felt like he was ours to keep. Kinda like a "gotcha" day.

We'd loaned him to MUSC for 6.5 months and on that day we were finally bringing him home.

We were thankful, frightened, excited and REJOICING!

I remember how overwhelmed I felt with the blessing of taking our sweet boy home. The Lord was so gracious and never left us during this long, hard journey.

My heart was sad to leave the dear friends (doctors, nurses and CrossBridge friends) we'd made. But I knew they were cheering our boy (and us) on as we packed up Jude's stuff and loaded him into the car. And their prayers followed us.

I get seriously weepy just thinking about that day. Precious Lord, you are so good. Thank you for the moments in life that you give us to remind us of Your glory and Your love for us!

As we rode the elevator down on June 26, 2012 with Jude in my arms, I don't think I could have ever imagined the journey the Lord has planned for us. It has been SO hard some days. But it has been SO amazing on other days. I never thought that we'd have "normal" days like today, June 26, 2013.

Thank you Lord for the year that you've given our family!

Over the Rainbow

As many of you know, July 27th 2004 (Rachael's car accident) and July 27th, 2011 (Jude's CDH diagnosis) were very difficult days for our family. This year, instead of remembering how awful those days were we've decided to celebrate the blessings the Lord has given our family since those days. 

Throughout both journeys we experienced rainbows as reminders of the Lord's presence in our lives during these difficult times. So, we are calling this our Over the Rainbow Celebration to help us remember and celebrate the joy the Lord has given us from his abundant blessings during our "storms".

We will be celebrating all evening, so come anytime! Bring your own picnic dinner to enjoy the evening with your friends, family and all of us. We will have cake and drinks to share with all of you. And we are hoping to have some live music (let us know if you are interested in playing for the group that night). Plus, plenty of fun outdoor activities for everyone.

No gifts please. Instead of gifts we would love to give a large group donation to Cross Bridge Ministries of Mount Pleasant, SC. Cross Bridge is the organization that helped Jude's family during their long stay in Charleston during his hospitalization. (Check out their website: cross-bridge.org).

This event will take place in low-state SC. For privacy and safety reasons, please contact us by email for event location information and to let us know that you plan to attend:
Just.enough.for.the.journey@gmail.com

We are all very excited about sharing this day with all of you! Thank you for being a part of Rachael and Jude's journey. We are so thankful for your prayers, love and support!

When: July 27, 2013 5pm until 8pm

Our God who heals

This is a short little post...but I just wanted to share this with you....

At bedtime tonight, Annabelle, Jude and I snuggled up into Annabelle's bed. (Brian was working late tonight)

We read the story of Jarius' sick daughter from the Jesus Storybook Bible. As many of you may remember Jarius' goes to Jesus to ask him to heal his daughter who is very ill. And as Jesus is traveling to Jarius' house to encounters a crowd and a woman that also needs healing. And by the time He arrives Jarius' daughter has died. I can only imagine the depth of the hope that was followed by the immense pain that Jarius and his family felt in that moment.

But Jesus tells Jarius and his family that his daughter is not dead, she is simply sleeping. And he speaks to her...she awakens...and rises from her bed. A true, amazing miracle. As I read this story to my sweet children I imagined the joy and the amazement felt by Jarius and his family. They witnessed the complete healing of their daughter.

And as I snuggled up to my kiddos I was reminded that we've been witness to a miracle as well! Jude should have died....many times. But the Lord provided miracles and healing for our son. How thankful we are to have witness a truly miraculous healing!

And then I was reminded also of the sweet babies with parents who prayed for miracles...just like us. But the Lord choose for their complete healing to be with Him...in His loving arms.

My heart rejoices from the joy I've been given from having my son with us today. But my heart is also holding closely all of you out there who have lost your precious children. We did not lose Jude. But we nearly did...so closely I could taste death's sting. And I just feel it is important to tell you that you (parents of children who left so early) are not forgotten. And your children are close to our hearts as well. We will always remember and pray for you. Always.

May Update

Hi again! :)

Time for your monthly Jude update...

Jude has been BUSY again!

Since my last post Jude figured out how to drink via zippy cup and just last week he figured out how to use a straw! Big steps (or I guess big sips) for our little guy! He is having to work extra hard when drinking out of a straw but he is getting the hang of it pretty quickly! In the last week he has been drinking more and more by mouth. We are super excited about his progress! The g-tube will remain with him still but we plan to talk with Dr. Hebra and his favorite MUSC team in August about their thoughts on when to remove Jude's g-tube.

Jude has also learned how to eat with a spoon and he has nearly mastered eating with a fork. Here's a little video of his spoon skills:

This past weekend my parents were in town to watch Annabelle in her first dance recital (she was SO cute and she had a BLAST!). When they first arrived at our front door Jude was working on walking with our awesome physical therapist, Kacie. As I opened the door he saw my parents and took several steps towards them with a giant grin on his face. He hasn't stopped walking since. He's on the move and on his way!

In not so fun news....
Since our last post Jude had a cold, followed by an ear infection and then a week later an infection in his g-tube. Those were some seriously not fun days for our sweet boy. But he has pushed through and recovered well.

But, we have some great things planned for this summer:
- 1st trip to the zoo
- 1st trip to the lake
- 1st family vacation
- 1st visit to the neighborhood pool
- 1st 4th of July get together (big deal in our family each year)

I'm sure there will be even more exciting events in Jude's summer!

Especially with his awesome big sister by his side.

Steak and potatoes kinda guy

Hi friends!

I guess I'd better go ahead and say that it seems that I am only capable of writing a monthly blog update. I always plan to write more but the little people are just keeping me too busy.

So, I'm sure you are curious about the title of this blog post.

Well, our boy is eating.

Well, actually....it's more like he is pigging out!

We've been amazed by the progress our little man has made with eating. He started a little slow and now he is a real pro!

Our awesome OT encouraged us to try all kinds of food to see if he has any texture issues or trouble chewing different types of food. The kiddo eats it ALL. No joke.

Thus far the only food he refuses to eat is lima beans. Who can blame him?!?!

Jude's favorite foods are the "man foods". Steak, potatoes, beans....you get the idea. He's always been a big boy....now the food he is eating is going to make him even bigger!

We are SO proud of him!

So, I am sure you all want to know about his g-tube. Does it stay or does it go?

As of right now, it will remain with Jude.

Right now Jude doesn't know how to drink so he is still receiving most of his fluids (water and soy milk) via g-tube. In the last few weeks he has been "drinking" a little bit here and there. He never learned to suck so pulling fluids into his mouth is a challenge. Currently he is working on drinking via a squeeze straw....kinda like a juice box. For the last week or so he has taken about 2oz 3 times a day. And this evening he took 4oz at dinner! (Mommy did a happy dance)

So, that is one of our big prayers right now....that Jude will learn to drink with his mouth. It is so hard to imagine him receiving all of his nutrition by mouth. But I'm confident that the Lord can get him there.

And thank you for your encouragement and prayers during this feeding journey. It has been a lot of work and we are so thankful that Jude jumped on board so quickly. We know of many CDH families that struggle for years with eating by mouth. It is such a hard spot to be in and a huge commitment to practice eating meal after meal...day after day.

Earlier this month Jude had a small procedure done at our local hospital. He went under anesthesia and was placed on the ventilator for the procedure. He remained stable throughout the entire surgery and came right off the ventilator without any trouble. Praise God for making it so! The original plan was for Jude to stay overnight so that the doctors could monitor him. But Jude handled his post-op time so well that we went home in the late afternoon!

Jude isn't walking but he could be! He is just so dang hardheaded (guess that is a plus when you are fighting a life-threatening birth defect. The boy just won't give in!) and clearly wants to walk on his own timetable. Crazy kid!

We are still slowly coming out of isolation. Jude is experiencing more and more of the outside world. We are still keeping him out of nursery at church and keeping him away from anyone that we know to be sick. Thus far he hasn't been sick and we are so thankful for that! Thank you to everyone who continues to help us keep Jude healthy until his lungs can grow bigger and stronger.

Jude still appears to be allergic to dairy products but at our last allergist appointment Jude's doctor did a blood test and the results of that blood test suggest that Jude might be able to pass an in office "challenge" of drinking/eating dairy. We of course would LOVE for him to have dairy products because (you know the boy will love cheese!) it would greatly expand his menu options. His in office "challenge" will be on May 31st...we will keep you posted.

In other fun news, a friend of ours captured our two cuties in some sweet Springtime photos:
ALL PHOTOS BELOW CREDITED TO CHERI RITTER PHOTOGRAPHY

I nearly cry every time that I look through these pictures. Love our kiddos so much. The Lord has been so good to us.

P.S. You can check out Cheri Ritter's website and Katie Preuss' website (she did our Christmas photos) on the sidebar of our blog. They are both amazing!!

Here comes April!

First, I must share this...

This photo was taken nearly one year ago. Look at my sweet chubby little man! This photo brings up so many emotions for me:

First of all, he is just plain beautiful! Those eyes? Be still my heart!

Secondly, my heart aches when I look at this photo. At this point in his life he has already experienced so much pain and such a rough journey. And when I see this photo I also know that it was only the beginning of his traumatic journey.

And lastly, when I see this photo I see the many gifts that the Lord has given Jude and our family. It is truly miraculous that Jude is the busy little boy he is today despite all of the medical challenges he has faced!

____________________________________________________

 So, what have we been up to over the last few months? Well, we still spent a lot of time inside in isolation as we waited for the cold winter days to pass. Don't get me wrong...these two kiddos have soaked up every moment of time together. I love how their relationship is growing into a playmate stage. Jude's favorite room is Annabelle's bedroom. There are tons of cool toys and Annabelle is always game for entertaining her brother. Right now they both enjoy playing in her kitchen with all of the fake food. Usually she sets up a little picnic and they take "bites" of every item of food. Jude LOVES it!

 I can't tell you how many times I've teared up over the last several months as I watch them play together. I wished, hoped and prayed that one day these sweet kiddos would enjoy the simple joy of being in each other's company. I love watching him study Annabelle's face when she talks in her funny, squeaky baby voice. I love how she insists on giving him a hug and kiss several times during play.

 Jude has also been enjoying his time at the dinner table a little more. Over the last month he has become more and more receptive to tasting new foods. Right now his favorite foods are Ritz and saltine crackers. But he is expanding his menu to Chex cereal and Sun Chips. He is not a fan of slippery textured foods like oranges or strawberries....but he is becoming more and more receptive towards actually chewing them and swallowing them. He is still a fan of all types of beans and today he ate some chicken. We are so excited about the steps Jude is taking towards eating all of his nutrition by mouth. We are still a long ways away from being g-tube free. Right now the amount of food he is taking by mouth is not enough to sustain him so we continue to give a majority of his food via g-tube. He is still receiving part of his meals from a blended diet and we are still giving him pediatric formula as well. Our hope is that we will be formula free soon. And there is NO WAY that we could do this amazing blended diet without our Blendtec blender. This machine works wonders, you guys!! We can put ANYTHING in this blender and it makes all of the food so finely blended that it goes into his g-tube without effort. It is truly the best blender on the planet! Hands down.

This month Jude also encountered his first GI bug. No fun friends.

Mommy had it first....and poor Jude was soon after. Thankfully Annabelle and Daddy avoided it! It left our little man feeling pretty crummy and his digestive system was pretty slowed down for several days. I was totally nervous that this GI bug was going to mess up all of the progress that Jude made from an eating standpoint. But I was wrong. The boy came out of the GI bug hungry as can be! Whew!

Jude did not have any doctor appointments this month...so we've been working hard with his therapists. Jude isn't walking yet but he is a brave little cruising kiddo. He does a lot of independent standing and moving without holding on the furniture....but he's just not quite confident enough to take a few steps completely on his own. We've tried to convince him to take steps towards us but he just drops to his bottom and fusses. And one thing we've learned about Jude is that he wants to do things in his own time in his own way. So, it has to be his choice...but we know he is SO SO close to walking on his own!

We've mentioned before that we are hoping to have a little party/celebration for Jude so that many of the people who have prayed for Jude can come and finally meet our little man. At first, we thought that we'd have a party this Spring. But the more we thought about it and the more I talked with my mom....we decided that the best day to celebrate would be July 27th. Some of you who have been reading our blog for awhile now may know the story of July 27th. But for our new readers, let me give you a quick history.

On July 27, 2004 my (Rose's) baby sister was in a terrible car accident that nearly took her life. After her accident many of our family members and friends began to see rainbows. And we began to see them as ways that the Lord was telling us He was present and carrying our Rachael through the storm. For years we'd celebrated "Rachael is Alive day". Then on July 27, 2011 Brian and I went for our 20 week ultrasound for Jude. On that same day, years later, we received devastating news of Jude's diagnosis. And again...we began to see rainbows and encouragement from the Lord.

So, my mom has decided that we are claiming July 27th as our Rainbow Day! And each year we will celebrate the joys and the gifts that were given to our family on that day. We are reclaiming that painful date as a beautiful date....to share the stories of our faithful God.

So, details will follow in the coming months...stay tuned.

There are a few things coming up for Jude in the coming weeks/months....look for another blog post soon!