Tuesday, August 12, 2014

Our big secret!

Written: Summer of 2014

I think it may be time to announce our secret...well, first announce that we have a secret..then tell you what it is :)

Its all about our Liam.

Actually our whole lives have been all about Liam for the last two years.  All about Dr appointments, surgery's, tests, heart-breaking results and miraculous healings.  Its been about prayer, and nights that never end and never offer sleep.  Its been all about mucus, vomiting, and choking...tears and smiles all in one.  Its been about days on end researching information for possible hope and many long discussions between a very stressed out Mom and Dad who both are relentless on finding help for this sweet boy.  Liam...Liam...Liam...all night, all day, for the rest of our lives. 

He has changed us in so many ways that I cant begin to effectively reflect on the truth of that statement.  It is too deep, and in many ways much more then I can handle to look back on.  I am just glad we were ushered through the last 2 years and all the fear that came with it by the very hand of God.  Thank you my Lord.

Ready for the breaking news?? 

Well it begins with a time line and it goes something like this.

First, Liam was diagnosed with DeGeorge, 22Q Deletion...and permanent sickness so they say.
Then, they told us the many things he wouldn't do, which he does do and we are pretty proud of it :)
Next, we were released from physical therapy but at age 2 he still eats primarily via G-tube and speaks very few clear words (but uses sign like a pro!!) Go Liam!

Then we plateaued.... Anyone who has special needs kids understand the time of "plateau" and how long, boring, and hopeless it can be.  It is a time when all progress seems halted, they don't seem to gain new understanding or move in any direction at all.  Sometimes it only lasts a few weeks and sometimes a few months...sometimes, it remains.

This plateau was different from the rest.  It was around November when it started and we were heading in the direction of surgery.  The Dr says, "Liam just isn't a clear case, we have to keep trying to understand what is going on with him."  This is the same as saying, "We are not really sure, so lets try surgery and see if that helps."  The procedure was to inject botox into the muscle at the top of Liam's esophagus to see if they could relax it.  Their philosophy was that the muscle was tense and not letting food pass through into the stomach, thus making Liam choke and have a potential to aspirate.

Nothing about it every settled right with us... so we prayed.

2 weeks before surgery, Liam got sick.  I took him to his regular pediatrician who explained to me that if I didn't feel right about having Liam's surgery done, he would inform the other team of Dr's that he didn't feel it was in Liam's best interest to have surgery due to his recent illness/fever, and that we should postpone it for a later time.  This would give us time to regroup and decide if surgery was the route we really wanted to take.  I love it when you have people in your court like that, those that understand that sometimes a "gut" feeling may take you down a whole new path.  And that is exactly what happened.

Our delayed surgery meant more time and so we decided to have Liam tested for some not so popular things.

We had previous lab results from our team of Dr's in Columbus, OH. One was a sed-rate test that told us how much inflammation Liam had in his body.  It came back extremely high, so high that the numbers were in conjunction with someone who was fighting off cancer, had juvenile arthritis, or one of the many autoimmune disorders that can attack children.  Liam was evaluated and didn't show symptoms or signs of any of these things, the Dr's couldn't tell us where he was inflamed.

This didn't really settle very well with us as parents and so we decided to take him to an integrative Dr who checked for nutritional deficicies along with diatary allergies such as gluten, soy, and yeast. As we sat in the office listening to his test results, the nurse correlates with our previous testing and tells us that Liam is inflamed and it is only going to get worse. She explains that the inflammation will eventually cause a severe condition in him and to expect a autoimmune disorder to arise in the future unless we take charge now.  She revealed that the inflammation was in the gut and intestines, so much so that it was effecting his entire make-up...everything was related!

The first thing we had to do was get rid of sugar!  The yeast have a major overgrowth all throughout his little body.  First thing in the trash was baby formula.  This was huge for us...this formua is the same formula we fought to get when Liam was diagnosed with Eosophilic Eosphagitis, it is extemembly expensive and sopposed to be the highest of grade.  BUT...after looking closer at it, we realized that it consists of 45% corn syrup solids as its main ingredient.  This could clearly be part of our problem, this had been Liams only source of nutrition for nearly over a year.

Now here is the news we are celebrating at home!

Liam is eating everything by mouth!  His tube has been removed!  He is gaining weight for the first time in a year!  He is not sick!  His inflammation is gone!  His runny nose has decreased along with the complications of swallowing!  He is getting stronger!  He is being healed!

Could sugar have been the root cause?
Could it have almost killed our son?

It is a possibility and a good candidate at that!  We are so thankful to have witnessed this improvement and be a part of seeing Liam feel so good.  This is his first summer to be outside without sickness, be outside as a boy...running, playing, and learning.

All glory to the Lord for his hand upon this boy!