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!!!!
