Wow… can you believe it has been over a year since we received the news that our sweet Madi may have a birth defect that would need surgery when she was born. We remember starting our posts and updating everyone of our weekly appointments. Things sure have changed. I was reading through a post from a little less than a year ago when we found out that the seemingly small problem we thought Madi had was a much larger, more serious issue. (See that update below)

UPDATE:

Tonight, we come begging for our friend’s and family’s prayers. Madilyn was not able to have surgery today. She was sedated and went to the OR to have a camera passed down her esophagus and trachea and unfortunately it revealed a much more in depth problem than we had originally known. We won’t give you the long medical name for her condition, but basically it showed that her trachea and esophagus are not separated at all from her throat down into her neck. This will be a life altering condition for Madi, not just a simple fix. They are assembling a team to work with her with several surgeons and different people and will be doing surgery next Tuesday. This next week it is very important that she doesn’t get anything into her lungs and that she doesn’t get any type of infection. She needs to be as strong as possible for surgery next week so we are praying she stays very strong until then. She will have 3 different procedures done next week so we ask that you please, please lift her up in prayer. We love her so so much and are praying the Lord will heal her, or change the situation. He is the Great Physician and can do above and beyond what we can even imagine. We just love our baby girl so much and can’t imagine life without her in it so please pray with us! Prayer is the only thing that can help at this point!

We remember sitting in our living room, trying to put together the words to beg our friends for their prayers. We were devastated. Unsure of how the Lord would choose to work in the situation or what would happen to our family, we begged God to help us and save our daughter. In the last year we have never felt so much pain, devastation, fear, anxiety, joy, faith, love, strength,and friendship. There is no doubt that we would not be where we are today without our great God. We also know that there is no way we would be here without everyone who has helped us along the way. Every prayer mattered, every person mattered, every word of encouragement mattered, every thing mattered, no matter how small! You will never know until you reach eternity how much of an impact you made in our family’s lives, and Madi’s. We have rode a roller coaster this last year, which we know will continue for years to come, but we are ready. With God’s help, and continued prayers we intend to continue serving the Lord as well as caring for our 2 beautiful children.

The lessons we learned this past year were not for the weary. We watched others experience extreme loss, to leave the hospital with only the memory of their child. We watched friends come and go from our lives. We spent many a day wondering if we would watch our daughter slip away into eternity. We thank the Lord every day that He saw fit to let us keep our sweet Madi and for helping us to stay strong and stedfast no matter the obstacles we faced. We often say that you truly don’t understand what we went through until you are there, and that is the truth. It is hard to remember that sometimes, others just don’t understand. We pray that this last year has helped us to be a better friend, son/daughter, brother/sister, Pastor, Christian, etc. The Lord has taught us compassion in a whole new light that many don’t get to experience, and we praise Him for that.

Here in the next week we have a lot to celebrate, but first we want to celebrate all of you! When we say every prayer mattered, we mean that. We know we have no idea how many people were lifting our family up in prayers and there is no way we could ever thank everyone personally. Our hope is that through this and through our faithfulness you understand our sincere gratitude.

As far as our family updates… We will start from the bottom and work up!

MADI is doing wonderful. She is off of her 2 biggest medications she came home on. In December, she came home on around 21mg a day of methadone and 20mg a day of Ativan. Last week she was able to take her last dosage of those medications. The doses she came home on were unreal, much more than an adult could survive. We have seen huge improvements in her alertness and abilities since she has completed those medications. She is weaning off a medication patch now that will take 4 weeks before she is finished and then we will hopefully be able to wean her off of her seizure medication in the future as well. Madi has been fitted for glasses and should receive them soon. The ophthalmologist said she is a little more farsighted than normal which causes her to cross her eyes to focus. They weren’t sure how the medications affected her eyesight so we pray we see some improvements in that area when she is completely off the last few ones we are weaning. Madi’s feeding will be an issue for a long time to come. She still is unable to have anything by mouth and gets fed 24/7 in to her small intestine. Our goal is to work to feeding her stomach in the future which will make a big difference in her diet and how often and how she is fed. We praise the Lord for how well she is doing, considering everything she has been through we know she is truly a miracle!

HUDSON is now officially a first grader. He has been a real trooper this last year and we couldn’t have asked for him to have handled all of this any better. He is the BEST big brother he can be to Madi. He helps us so much and loves to play and do whatever he can with her. He is not scared of all her tubes or of anything she does, he really loves being a big brother. He has lost 4 teeth in the last year, 2 by accident and 2 by pulling. He managed to have the flu and not get anyone else sick. He had his first girlfriend and we’re certain not his last. He is ever changing and crazy as ever. We sure love him!

MEGAN officially became a stay at home mom in December. She has learned so much about caring for Madi and does that every day and night. In January she was finally able to get back involved at church, which she missed dearly over the 6 months Madi was in the hospital. She has made many, many new friends who have no doubt helped her grow and become a much stronger person. Most importantly she has grown in her faith, love, and compassion.

MATTHEW has continued to be the glue that holds this crazy place together. He is the calm in our storm and the wind in our sails. He has been faithful to his family, his friends, his job, and his ministry. In the recent weeks he became the senior Pastor of our church, which is very exciting. He continues to work full time at the bank, and work several other jobs to make sure our family is supported. He is the most sacrificial father I know. He never puts himself first and is always mellow (which is a necessity with the other 3 crazy people in the house ha-ha) Ultimately, besides the Lord, he has been our rock this year. There is no way any of us could have made it through this last year without him!

We are so thankful to be able to share happy updates and we pray that continues. Thank you all for all your prayers and we ask that you continue to keep us in your prayers as our lives are ever changing. We will be posting birthday pictures after our big birthday bash this weekend! So, so thankful to be able to celebrate this miraculous year!