Tuesday, March 26, 2013

Our Adventures with our Little Man...

Little Man was getting worse about 3 weeks ago, the new diet wasn't helping him.  He lost 2 more pounds and I was getting scared.  I took him into his pediatrician for a weight check and I found myself in tears when the nurse weighed him.  I emotionally broke down and and prayed God would show the right path to take.  This particular dr visit was the worst I've had in a long time.  I had both kiddos with me.  My son was still losing weight and I had no idea how to move forward.  The diet was taking all of my energy.  I was preparing meals every night for the following day. Everything had to be made from scratch, right down to what he drank.  I was drained and so were our finances. My little guy was only 19 lbs, how much more could he lose before there was nothing left.  The doctor came into the room; reviewed the chart and said "something has to be changed."  The Ped decided to take over everything since the specialist no longer offered any help or hope.  He looked over all of Little man's test results from day 1 and looked at his charts.  He could not find any diagnoses or lab work indicating my son had celiac and the growth charts were indicating the gluten free diet was contributing to the failure to thrive.  I was confused, frustrated, and at my end at this point in the clinic room.  My kiddos were literally throwing books and diapers around the room.  I think Little Peanut even jumped off the examining table at one point.  I felt hopeless, helpless, and confused.  I felt like the worst mother in the world.  I cried.

After many more test results, second opinions, and seeing a dietitian in Marshfield; two weeks ago, we decided to try Little Man on a normal food diet with pedia sure as a supplement.  Yes, we returned him to gluten, eggs, and milk.  Slowly over the last 2.5 weeks, we introduced things back into his diet. It was such a hard decision to make as we saw gluten hurt my little guy so much.  I didn't want to willingly bring him pain.  But, his weight was getting so low.  At this point, he was now smaller than he was at 8 months old.  The doctors and dietitian agreed that he wasn't getting enough calories to grow or maintain his weight causing him to have failure to thrive.  It was all we had left to try here locally. The current theory is that his stomach was immature and couldn't digest the gluten when he was younger.  It wasn't a fantasy that my son got so sick from gluten.  His grandparents can attest that our little man was very sick from it.  We all hesitated giving it to him.  Now, after two weeks of eating real food, he is doing wonderful. He is not in any pain from it.  He sleeps great!  He plays continuously. He loves his Thomas the train.  He runs around the house after his big sister, laughing.  He has learned new words and letter sounds. He responds better when talking with him or giving him a directive. He loves to annoy his big sister. The scratching all over is down to a minimum.  He loves eating crackers and bread.  He loves drinking regular cow's milk. And most importantly, the clothes he has been wearing since last July are finally starting to get too small!!!! He even grew out of his infant carrier seat!!! He is now in a convertible seat!!  Yippee!!! He hasn't been weighed yet to officially know if this "normal diet" is working, but I have a good feeling about it.  April 1 is his next weigh in at the ped's office.  Please pray that he has gained his weight back and maintains it!  This normal diet is only a trial run until we see enough progress to keep him on it.  We are praising the Lord for answering our prayers.  God can only receive credit for Little Man's progress.  Not the test results, doctors, or lack of information provided from the specialist.  God is healing our Little Man!  If he celiac or not: we do not care at this point.  What we care about is that our boy is doing better.  We are in no way out of the red zone yet. Please continue to pray that he continues to eat, respond well, and GROW!!!  If he goes downhill again or continues to not gain weight, they will do a biopsy to confirm if he has celiac or not.  In order for the biopsy to be positive, Little man has to eat gluten for 3-4 months before preforming the biopsy. If he grows and continues to do well, we will not have to do the biopsy.  Meaning this trial normal diet indicates celiac is negative. Please continue to share his story and pray for him.  I know this current answer sounds so off the wall.  We as a family, could get so angry at the first doctor for even suggesting celiac, but we choose not to.  We could be so angry for how much money we have spent on gluten free living.  But we are not. We have chosen to be thankful for help and finding a doctor that truly cares and wants to see him get better. We are thankful that we can buy normal food, practically giving ourselves a raise because of the cost difference in food.  We choose Joy that we have gone through many trials to grow us closer to our Lord and Savior and each other.  Someone once said, "when life gives you lemons, make lemonade with them."  That's what we have chosen to do.

Philippians 4:4-9;13
4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you…13 I can do all this through Him [Christ] who gives me strength.

P.S.  Please pray for April 9 for our Family.  It is confidential but we hope to be able to share with everyone very soon.  April 9 is a very special date. Please pray for all the details to go smoothly and that the person with the authority to make a change chooses to.  Thank you so much for your prayers.

Tuesday, March 12, 2013

Little Man's Check-up

Little man's check up on Monday didn't go as expected. He is down more weight. We are seeing a pediatric dietitian at Marshfield clinic next week for a second opinion and possibly alteration of his current diet plan. If the diet doesn't start stabilizing his weight, his pediatrician will put him into the hospital for a controlled environment to figure out how to help him grow. Please continue to pray for wisdom as we decide which direction to pursue. There are thousands of opinions being brought our way and it becomes overwhelming. We are making the best decisions we know how given the circumstances, our prayers, research, and the doctors God has put in our lives right now. Under the direction of his pediatrician, Dr. Mathias, and as a family this is our plan. We appreciate the prayers and support greatly. Please continue to pray for Little Man's healing and growth. Please pray that the dietitian can offer some help to him. If these next steps do not help our little man, we will consider looking into other options across the nation. But in my heart, from a parent to a parent, I don't feel it will come to that. I trust Dr. David Mathias with my son. God put this pediatrician in our lives for a reason and I'm trusting God with my son's life. As of right now, we are still working with Dr. Kevin, the nutritionist, as well.
This experience with my son has brought my husband and I closer, even when we thought we couldn't get any closer. We are closer to The Lord and our hearts are full of Joy. True Joy comes from The Lord not our circumstances. Our greatest prayer is that God will receive Glory and honor from our son's story. Little man is a fighter, I have faith that he will grow, and know deep in my heart that we all are going to be just fine, better than fine; we will all be better because of this trail in our lives. Romans 5:3-5 says "we also glory in our sufferings, because we know that suffering produces perseverance, character, and character, hope. And hope does not disappoint (or put us to shame) because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us". We trust in our Savior, please join us in trusting God and praying for Little Man's growth and the doctors' wisdom. God never promised life would be easy just possible through Him! Philippians 4:13 " I can do all things through Him (Christ) who gives me strength."