Category Archives: Our Journey

Going deeper and moving forward.

The Comeback

Our Journey, You are Not Alone, , ,

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Ever feel like this guy?  I have and quite often lately.  After developing The Poopinator I was sure Matt’s problems were over…and for a while they were.  Slowly it stopped working.  Before I knew it, Matt was back on Miralax and then some.  Each additional medication and technique would work for a while then stop working.  At one point I told his GI doctor in exasperation, “I feel like I am doing CPR on his colon all day long!”  The terms appendicostomy and colostomy began to circulate and I became worried.  How could this be?  He’s super hydrated and has the cleanest most fiber filled diet of anyone I know. What am I doing wrong?  Answer:  Absolutely nothing.  Even the best blenderized diet can’t fix a mechanical problem.

Eventually he ended up back in the hospital for yet another clean out. I needed answers to questions that sometimes even doctors can’t answer.  My thoughts became filled with “What ifs?”. Further tests were done that showed he did not have a specific area that had stopped working but that he was slow over all.  So we left the hospital cleaned out and back to square 1.  If the current regimen fails then we will have to carefully consider what is best for Matt. Even though the test didn’t show something that was an easy fix,  I still feel better.  Knowing is way better than not knowing.  Now we can move forward to whatever the future holds for him.  And always, I pray and hope.  God had a plan for Matt’s life when He placed him in our family (Jeremiah 29:11).  My job is to make that life the filled with as much quality as I can.

So, since quitting is not an option, I will blend on while listening to my new anthem “The Comeback” by Danny Gokey.  Feeling defeated today?  Click, listen and be revived.

Another PICC Line

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Another PICC line

Hands up.  Eyes closed.  Twisting at the waist as if the top half of him was actually a washing machine agitator.  Sunday morning worship is extra special when Matt is with us.  Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence.  Some would say, “Well, he doesn’t know any better.”  I beg to differ. He may not understand it (neither do I for that matter) but he feels it.  He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy.  Oh, if I could only live life the way he does-To be that strong.  I think I would have checked out long ago.  What joy he brings to others.  I truly believe that is his calling.  “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”.  But, as his mom, it is times like this that break my heart.

Another PICC line. Another g-tube stoma infection that won’t clear.  Another round of IV antibiotics.  A bowel that stops working no matter what I do with his diet. More unanswered questions.  More decisions to make for him.  Decisions that undoubtedly will involve more pain and more time away from home and school.   I try not to question God but sometimes it’s hard.  It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home.  Or,  every weekday when he says, “Mom.  Go school?” and I have to say “I’m sorry.  Not today.  You can’t go to school with a PICC line.”

I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion.  Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions.  Many live long, happy and even independent lives.  When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family.  I liken it to standing at the alter on your wedding day.  You stand before God and man and make a vow “til death do us part”.  Why?  Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day.  If He did, many of us would never marry.   And so it is with our children.  Some come into the world healthy and stay healthy.  Some come in healthy and get very sick or become disabled in some way.

So what do we do?  Just as we would for any sick or injured spouse or child.  We rise each day, ask God for renewed strength and deal with what’s in front of us.  If  Matt can  take it, we can make it.

 

Baby Steps

Our Journey, Tubie Talk, You are Not Alone, , , , ,

Yes, even veteran tubie moms can struggle from time to time.  Matthew can’t handle large volumes because of his slow emptying issues. He is a growing teenage boy who is now more active than he’s ever been in his life. It has been quite a challenge getting him the additional calories he needs without increasing volume. Recently I had to add another carton of formula to his daily routing because his weight was dropping. I have been hesitant to try coconut oil and/or milk because of extreme food allergies in the family. For years I have been making his oatmeal with formula. Helping a transitioning little one has given me the courage to try adding 1/2 tsp of organic coconut oil in his immune system cocktail (given through the g-tube) to see how he reacts. It’s been 2 days and so far so good. If he continues to show no allergic reaction I will make his next batch with fresh coconut milk instead!

I’m Back!

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It’s been very busy here at the Barton home lately.  Shortly after starting this blog we found out that Matthew needed major hip surgery.  I was a bit overwhelmed by the news because the x-rays from the prior visit with the orthopedic surgeon looked great.  On top of all the digestive tract problems, Matt also suffers from bilateral hip displaysia.  That means that both of his hips dislocate.  Because of their loose ligaments, kids with Down Syndrome are prone to it.  We found out when he was 4 and he wore a brace for 8 years hoping it would correct the problem without surgery.

The brace did work on the right but his left hip continued to dislocate.  So, at the end of December, Matt had his surgery.  Unfortunately he was back in the hospital 1 week later with an infection in his hip because of his weak immune system.  Now after 3 months in 3 different casts

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Cast #1
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Cast #2
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Cast #3

and 2 months in a new brace, he is walking on his own without the help of the brace or walker!

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Walker and New Brace

Now if that weren’t enough, 3 months before the surgery, he began having major problems related to his Hirschsprung’s disease. In my next post, I will talk about what happened and share my green smoothie recipe that worked where Mira lax failed. Stay tuned!