Little Man's answer doesn't come easy...

The answer we have all been waiting for has good news and bad news. We thought he originally lost weight because of being sick back in the end of January.  However, he continues to decline.  So far what I understand is that my son's body is starving himself, if not fixed, to death.  The food he eats is being "attacked," just like a virus, and being rejected. His digestive system is very inflamed and damaged.  The GI doctor's tests prove that my Little Man's body is basically eating itself.   Hence, the weight lose.  His body is burning his only stored fat as fuel.  His arms and legs are getting skinnier.  It's so hard to watch my baby struggle without being able to do anything about it!  I'm so thankful that I continued to fight all the doctors and people who kept telling me he was fine.  I knew he wasn't fine, I praise the Lord for the "mommy instinct"!!! The Lord is protecting my Little Man!
We also received the test results from Dr. Kevin, the nutritionalist.  This is where it gets a little hard to grasp.  This is where we sing praises for an answer to help my Little man, and also weep that the answer is going to be a challenging road ahead.  Little man is the doctor's worst case he has ever seen. Dr. Kevin ran a blood test to determine what foods Little Man's body is " allergic" to.  When a person with celiac disease eats gluten, it damages and inflames the digestive system.  If its bad enough, just stopping gluten doesn't repair all the damage.  Because Little Man was exposed to gluten in utero and then 9 months through breast milk, before we stopped eating gluten; that left 18 months of damage.  His body started "flagging" normal food as harmful.  Fast-forward to today (almost 16 months old) and my son's body now recognizes all food except apples to be harmful. Yes, he is essentially allergic to everything. If we fed him just apples, he would become allergic to that as well.  Which explains why he can't absorb nutrients or fat.  His body has said it won't absorb the food because the food is harmful.  However, in reality or the "real" world, so to speak, this food isn't harmful to him.  We have to "re-train" his body to unflag food as bad.  As of right now, all this food is continuing to cause his digestive system to be inflamed.  He continues to use his stored body fat as fuel and continues to lose weight as a result.  We need to put him on a special diet for an extended period of time and special supplements.  We are keeping him off of all the foods that the blood test showed as highly allergic. The foods that are slightly allergic and low we will feed him on a special rotation diet. These allergies are IGG allergies, meaning they aren't true allergies.  His body is intolerant of these foods right now.  We have to put him on a 3-4 day food rotation diet. Meaning he will not eat the same thing two days in a row.  Thus giving his body a break from different foods for a certain number of days.  I'm still not quite sure what this diet means but I'm anxiously trying to understand it so that we can help him as fast as possible.  Because of all these allergies, Dr.Kevin said it may take up to 2 weeks to find  all the necessary supplements for Little Man. Please pray he finds them quickly!  In an adult this type of diet usually takes 6-9 months to heal the digestive system enough for the body to unflag the food as bad or harmful.  Please pray that we see improvement and growth as soon as possible.  At a minimum, at least maintain his weight and stop losing it! We serve an amazing God who tells us to pray continuously.  1 Thessalonians 5:17 says "Pray without ceasing."  John 14:13-14 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son.  If you ask me anything in my name, I will do it." Please pass along our story and get more and more to pray for our Little Man.  You have my permission to copy and paste my blog to your Facebook page, twitter, blog, and whatever media source you have to get as many people as you can to pray for my son! God is powerful!!! Lets pray for a miracle!!! Lets save our Little Man! Galatians 6:2 "Carry each other's burdens, and in this way you will fullfill the law of Christ."
Please also pray for the financial part of this adventure we are about to embark upon.  Dr. Kevin and the supplements are not covered by health insurance.  Each visit is $125-$200 a piece.  He wants to see us every 2 weeks. The supplements, we are anticipating to cost hundreds of dollars.  God always provides and we trust in him.  Please join us in praying!!!

Romans 8: 28 "And we know that for those who Love God, all things work together for good, for those who are called according to His purpose."


Praise the Lord with us for answering our prayers for answers, Join us in prayer for healing!

Update on my Little Man!

We have come such a long way since the day our Little Man was born.  We all know the battle we were going through with him virtually his whole life.  First it was his PWS, the possible sturge weber, the scary seizure "watch", the constant pain and crying, the acid reflux, and the asthma; and then the  diagnoses that changed everything   My little man has celiac disease and this has changed our lives forever.  No longer is it easy to go to someone's house for dinner, have a play date, or even go out to eat with friends and not have to think about the gluten.  Gluten is all around us and this stuff is deadly for my son.  Our whole family has gone gluten free to protect my little man.  Celiac is a genetic autoimmune disorder.  There is a very high chance that SuperDaddy or I carry this disorder.  We are gluten free and at least SuperDaddy has reacted to gluten.  So we will continue to keep all of us gluten free.
Little Man has been doing extremely well these days.  He is happy, full of smiles, walks, runs, and loves to play with his Thomas the Train RC car.  He is sleeping very well at night in his crib from 6pm to 7am.  My son is a completely different boy without gluten.  His asthma is doing very well.  He only needs the minimum amount of medication daily right now.  His acid reflux is gone as far as we know it.  He has been off of that medication for over a week and doing wonderful!  My little Man is 15 months old and I am one proud mommy!  I was able to nurse him with God's help until 15 months.  That was my goal after my daughter stopped on her own at only 10 months.  Little Man is now happily using a sippy cup and drinking almond milk :)

Here is a happy picture of my little man...

And then this is where I ask for prayer.  My little man is doing exceptionally well in all areas except his growth.  Once we went gluten free his weight spiked up to the 40% back in september.  We are now in February, 5 months later; and my boy is still has not gained weight, he has fallen off the growth chart.  He grew 1 cm and has lost roughly 8 oz in weight.  The doctors are suspecting another problem going on.  We are seeing multiple doctors to try to find answers.  Poor Little Man has had too many pokes with needles that this mommy cares to count.  Please pray with us to find what is causing my baby not to grow.  If he was just a small boy, we wouldn't be concerned.  Please understand that his size does not matter.  What matters is that my boy isn't growing at all!  He has been labeled failure to thrive.  Please continue to pray for the doctor's wisdom to determine the cause behind this.  But like I stated earlier, look at that boy,  he is so happy, content, and growing intellectually in leaps and bounds!!!  The doctors said that they expect him to continue to grow intellectually because when something isn't right, the body feeds the brain first, when that fails, "they become very concerned".  So thankfully, my Little Man is still growing intellectually!!!!
So please don't worry about our Little Man, we trust him to Our Lord and Savior !  Please pray for his growth!!!!