Home again, home again…and an opportunity to help!

October 11th, 2013

Yes, it’s true!  Back home already, hurray!

A quick update while Daniel and Laura are taking turns reading aloud to the younger children on this our weekly Reading Day–

While we were in duPont this time, baby Ben cut his first tooth and learned to roll over from his back to his belly.  He also received lots of attention from his many fans on the 3F wing at the hospital!

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Tommy’s G-tube was able to be placed laparascopically rather than via open surgical procedure, and it was decided that he didn’t need an additional procedure called a Nissen fundoplication, which is often done at the same time.

So the deed is done, and we are unequivocally happy about it!  The new feeding and treatment plan is allowing him to finally begin to put on some weight and keep it on–four pounds at last check!  We call that success!

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Our little boy’s joy is contagious and makes it a pleasure to care for him despite the many challenges!  He brought a smile to the face of one of his doctors who hadn’t smiled all day up to that point!

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During this hospital stay, he didn’t screech one time, not even during his wheelchair ride back to the front entrance!  He’s healing without complication and is already doing well back on his normal feeding routine, thank the Lord!  That allowed him to be discharged quickly.  As highly as we think of all the staff at duPont, home is always our favorite place to be!

Our biggest immediate challenge is in finding a way to prevent Mr. Houdini Sticky Fingers Musser from taking off his no-no’s and pulling the tube out during his overnight continuous feeds.  If that happens within the next couple of months, it will mean a visit to the emergency room.  For now, we’re trying to wear him out and keep him up later to help him sleep more soundly than usual.  And not start his feed until he’s asleep.

 

Then this Sunday evening, we’re on the road again, back to Delaware!

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Katie’s ear tube and tear duct stent surgeries are planned for early Monday morning, and Tommy’s sedated ABR test is set for Monday afternoon.

We’ve dug in our heels to get through this time, and then the next scheduled visit to duPont won’t be for a couple of months.

Just to illustrate for you how tenderly God is caring for us–

We didn’t know until this morning that Katie and Tommy’s surgeries would not occur at a similar time, necessitating a qualified someone over the age of eighteen to stay at the Ronald McDonald House with the child who is not in the hospital at the time.

Wouldn’t you know that my youngest sister just moved back east this week after several years and said she would love to help us out with this?  She is the right person in the right place at the right time and God had it all worked out before we had any idea we’d need her!

Okay, now that I’m on one of my favorite subjects, I have to tell you more!

Did you know that the $1000 feeding pump we use for Tommy cost us nothing?  Not long ago, we actually had two feeding pumps in our possession and gave them to another adoptive family with several large boxes of feeding bags and supplies!  I had to laugh when I realized that Tommy would need a pump after all!

Well, God has an endless supply of what we need, no matter what it is, and creative ways of getting it to us without benefit of insurance.  Most of Tommy’s needs are also not shared by Samaritan Ministries, of which we are members.

It looked something like this…

 

Sweet hospital social worker:  We’ve never had this happen before, but not long before you came, a family donated their feeding pump and travel case to the hospital for anyone who might need it.  And we have extra formula, an IV pole, and lots of boxes of feeding bags and other supplies to send home with you, too.

Susanna:  What would the charge be for all this?

Sweet hospital social worker with a beaming smile:  No charge.  This is what it’s there for!

Susanna, looking her in the eye:  You see how God makes it all work?

Sweet hospital social worker:  Yes!

Susanna:  I’m totally serious!  Years ago, we might have thought we couldn’t adopt a child like Tommy because we didn’t have all these resources!  I could tell you story after story of how God is providing everything we need!

Sweet hospital social worker, with amazement:  Wow!!

 

When we arrived home after Tommy’s last hospital stay, we had enough formula to last us several days, and there would be a gap of two days before our ebay purchase would arrive.  Not too hard for God!

We signed up for the Oley Foundation equipment exchange an amazing friend had told us about, and were told that it would be about a week to ten days before we would receive formula that way.  But…!  A ministry in our region had offered the exact formula Tommy needs, and allowed us to drive to their location and pick it up!  So for the price of gas, we received eleven cases of formula that would have cost over $1300 at its list price!

I wish I had the time to tell you all the ways God is caring for us, like a friend sending a pizza meal as a treat for our children, another friend visiting us at the hospital and bringing us clothing for our children, or yet another friend canning 50 quarts and 25 pints of applesauce for our family!  An adopting family in our church fellowship is still bringing a meal for us each week!  I could go on and on and on!  He’s giving us everything He knows we need and many extras to share, just as He did before He sent us children with special medical needs.  [Dear giving friends, I am so far behind on thank you notes, but they WILL get written!  Thank you for your patience!]

For a infinite and all-powerful God, it’s not harder to provide for a dozen children than it is to provide for two children.  What’s a little feeding pump to the King of the universe, I’d like to know?!

He has not set limits on His ability to provide for His beloved sons and daughters and we are seeing it every single day.

In fact, the greater the needs, the more it seems He takes delight in meeting them!

You might get tired of hearing me tell you this, but I don’t care!  I will never get tired of telling you that we are trusting Him for 100% of what we need, and He is proving Himself to be 100% faithful!

Praise HIM!!

 

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What about that opportunity to help?  What’s that all about?

Be watching here for an opportunity to help a certain family who very much hopes to bring home a certain little girl you have seen on our blog many times! 

In the meantime, please don’t ask more questions just yet, my friends, but I think you’ll know just how to pray!   So please do pray, pray, pray!!!

 

 

 

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19 Responses to “Home again, home again…and an opportunity to help!”

  1. MamaV says:

    Hooray! I am thrilled to see God providing for His people!
    love, Virginia

  2. Deanna says:

    Love to hear of His faithful provision!
     
     

  3. Our God, He is faithful (and generous and merciful and loving and…the list could go on and on!)  I’m so encouraged by how God is providing for your family!
     
    And what a lovely update on the g-tube ‘non’ surgery.  We’re praising God with you!  Now pack on those pounds, sweet Tommy!  (Well, not that many pounds, or momma won’t be able to pick you up!)

  4. Maureen says:

    What a wonderful update (again!!!) So glad you were able to share about God’s provision for Tommy.
    Curiosity is totally piqued….will be praying for a particular little one, whom I hope it is!

  5. lizzie says:

    Amazing!   Love these stories of provision!  Praise God!          Praying and praying.  CANNOT wait to hear more!!!!!   xoxoxoxo

  6. Katie says:

    I’m so glad to hear the surgery went well. I wanted to share this solution for keeping busy hands away from the G-tube: http://www.benik.com/peds/wrap/g-tube. There are also Button Buddies to soak up seepage around the tube from http://mybuttonbuddies.com/. I found both of these products on this blog post: http://articles.complexchild.com/july2011/00310.html. Yay for Tommy being on the road to good health!

  7. Susanna says:

    Thank you, Katie; these look great!

  8. Tami says:

    Fabulous fabulous news all around!!! 
    And I am eagerly waiting to hear more good news about the little girl you are hinting about….  so hoping it’s who I think!  :D
     
     

  9. Cindy W says:

    PTL for such progress and His tremendous provision. 

  10. Tina says:

    Great news! Do you mind me asking what kind of formula he is on? There is also a fb group callers “medical supply exchange”.  People post stuff free for shipping all the time- it is so worth it

  11. Cindy W says:

    What pump, bags and formula are you using, maybe some of us can find some resources for you.
    Praying the nights go well and for GI healing.  Great that he’s gained weight

  12. Melissa says:

    Praise God for his mercies! He is truly faithful. I am learning that lesson lately…I somehow can believe God for big stuff (healing, financial provision for adopting families, etc) but He’s been chasing my heart for the little things. “If I can do all of these, why do you think I wouldn’t be interested in all the others?” He’s whispered…
     
    I know you won’t, but Susanna, please never stop testifying to God’s goodness in all things, great and small. Your testimony is such an encouragement.
     
    Thank God also that Tommy is healing! He has such a fire in his eyes for life!

  13. Carol Z says:

    Lots of thanks for prayers answered and prayers for more miracles to come!

  14. Katie S says:

    Hi Susanna,
    My mom a bunch of buttonbuddy type tube pads for my little guy. Since we have more than we need I’d be happy to mail a few to you to try. Ditto on asking what formula he is on, I have some cans sitting around that we won’t use.

  15. Susanna says:

    Katie S, THANK YOU! I was literally going to order some tube pads tonight! Wow!

    He’s on Peptamen Jr. Prebio, any flavor or unflavored. We use the flavored during the day and let him eat as much by mouth as he’s willing to take, then put the rest through the tube. Unflavored is for overnight continuous.

    Thank you so much for offering this help!!

  16. Robin says:

    Do you like the button buddies? I can make some. 

  17. Susanna says:

    We would love to have some, Robin. You are a blessing to us; thank you!

  18. robin says:

    I have close to a dozen ready to go in the mail today. They aren’t super pretty who will see it anyway!

  19. Susanna says:

    I don’t care one iota what they look like, Robin! I’ve just heard that they’re more effective than gauze at preventing granulation, and it’s great that we can launder and re-use them! Thank you so much! Emailing you…

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