Charlie’s celebration was such a blessing to our family. Thank you to the hundreds of friends, family, and Charlie supporters for joining us at the celebration in person and the via livestream. Here is a link to the slideshow we showed at the funeral. We had a wonderful trip to UT and ID to be with family and friends. We met and were able to hug so many people that have helped carry us through their prayers, what a blessing!
A Friend Writes:
“With hearts of celebration, we honor the giant impact of Charlie, The Lion-Hearted! There will be such lasting fruit from his legacy of courage and obedience, a giant footprint on so many lives. Faithfully fulfilling his assignment on the earth, the roar of his triumphant heart synchronized with the roar of heavens applause as the Cloud of Witnesses cheered his strong finish. What remains in the wake of such a champion? Spayed Giants and God’s glory! A job well done indeed! Charlie shifted destinies, unlocked treasures, deepened unconditional love and highly mirrored the image of THE Lion.”
-We love you AE!
Charlie is home with Jesus and free!
Our family has been honored and blessed by the love, prayers, care, and support poured in from each and every one of you! We are so grateful to have walked this beautiful journey with Charlie, and we will miss him much. But we are so excited that he gets to worship his KING where meds, tubes, and pain do not exist! What a glorious place! Charlie was courageous and peaceful and fought like a true warrior to the end.
We would love to have you come celebrate our sweet Lion-heart with us Tuesday, March 21st at 3:00pm ~ Reformation Church of Elizabeth (489 Rocky Cliff Cir. Elizabeth CO, 80107) We are working to set up livestream for those of you from afar, so stay tuned for details.
With great Hope in Jesus and with absolute knowledge of what lies on the other side of the river of death I wanted to update you on Charlie’s situation. With a new added infection today and the digression of Charlie overnight, it has become clear today that we need to bring Charlie home to be where he is happy and with the people he loves quickly. Hospice will be helping us out in these, what appear to be Charlie’s final days. There will not be a final push to try to get his gut to work as this would be more detrimental to Charlie at this point. We sense a strong calling from the Lord to bring Charlie HOME (heaven) to be with HIM. I love each of you!
With much prayer. With much love. With much faith. With much hope. With much joy and many tears. With great expectation. With great anticipation. We will be bringing Charlie home next week challenging his gut to nourish his body. With his line no longer being a good source of nourishment, we are asking God to resurrect Charlie’s body as we step forward and hope that his belly is capable of nourishing his sweet little frame. The doctors are not super optimistic but are helping us design the best plan to give Charlie the best possibility of being able to thrive by nourishing him through his belly. In order to execute this plan at home we will be set up with everything we need to give Charlie the very best shot at this. Charlie is feeling much better after beginning the correct anti-fungal drug to kill the fungus. He is playing in his bed throwing his toy balls around right now. Savannah will play with him today at the hospital so I can get some much needed rest at home.
The right direction for Charlie is crystal clear. My flesh is weak, but my Jesus is strong. Please pray for us as we step forward each day, each moment, each decision. Please pray that we would have strength, hope, courage, and lots of love as we press forward.
My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
(Charlie has an Instagram account that will be updated more frequently if you would like more regular updates and prayer needs: lionhearted_charlie – though we will try to keep the blog up to date as well.)
- loves giving hugs after he has missed you, wrapping his chubby little arms around your neck and squeezing
- cuddle bug
- loves his new squeeze bottle with water
- mobilizes by rolling places
- loves Pat-a-cake and Itsy-bitsy-spider
- talks and coos
- loves to be in the warm sunshine soaking up good Vit D
Charlie is the one of the biggest and best things that has ever happened to me! “Oh, she is just bias,” you may be thinking. Ok, well…maybe only a tiny bit. 🙂 But, seriously! I cannot even begin to describe the amount of love and joy this little guy can pull out of you….it’s amazing. I LOVE babies….but I never knew I could love one SO much! When I asked he Lord for a little Down Syndrome sibling, I had no idea what kind of package God would send. This journey has brought so much joy, many tears, lots of laughter, patience, perseverance, and ultimately…it has brought us all closer to the Lord. As we continue our journey with Charlie, the Lord constantly reminds me that:
His timing is perfect
His power is made perfect in our weakness
Nothing is to big for God to handle
Never underestimate His LOVE, CAPABILITIES, POWER
And so, with faith, we are asking God for another miracle. God is full of miracles and we know the Lord saved Charlie once, and we are asking Him to do it again! The clock is ticking and time is running out with Charlie’s IV feeds. If Charlie is to live, grow and thrive, his stomach needs heal. The Central line (IV port) is risky and its infections have been the cause of the last few hospitalizations. It has also believed that we are out of central line sites, so another infection could be hazardous. Also, his liver and heart can only bear the IV nutrition for a limited time before becoming destructive to those organs. We have tried many things to help heal Charlie’s stomach, but ultimately he needs a miracle. The Lord has been so good, so faithful, and so powerful in Charlie’s life. HE IS ABLE!
Will you join us in asking the Lord for a miracle? Charlie is the Lord’s and we trust in HIM!
With love and gratitude,
I am the Lord, the God of all mankind. Is anything too hard for me?
We have been celebrating that Charlie has found the strength to bypass the trach and make loud and strong baby noises! We spent many weeks in the hospital in the months of November and December with line infections but the day we returned home from the hospital he began talking! I will never forget the last time I heard his voice and cry before he went in for his tracheostomy. It was a very hard day for this boy’s mama… But today we thank the Lord for growth, strength and progress! We recently made a change on his ventilator which was a wean towards taking him off the ventilator. In April there is one more wean to make and then we can begin taking off the ventilator for trial periods. At that time we will take a peek at his airway to see if it would be wise to take out the trach or not in the very near future. Many babies with Down syndrome have a more floppy airway and struggle with issues like sleep apnea etc.. We are hoping to find a strong and open airway that will allow the trach to come out sooner than later.
Charlie brings great joy around our house. There are always a pair of arms itching to hold Charlie. We are still working on regaining strength, skills, and progress with feeds since our last hospital stay. Baby steps…
success this week with speaking valve trials, progress with belly feeds, protection from infection, strength/perseverance/hope as our family loves and labors for Charlie.
This morning, at 72 hours Charlie’s blood cultures were (and still are) negative! Praise God! Charlie will go to the IR (Interventional Radiology) at 12:30 today to get his short IV line made longer and put all the way to his heart. If all goes well we will be discharged early this afternoon, hopefully right after the surgery. Thank you for all your prayers and love for our little Lion! He looks great and is requiring very minimal oxygen
It has been a blessing to see some of our old NICU friends today. There is one family with a DS boy named Charlie, and his mom’s name is Debbie, its a fun similarity. Another little DS girl we know just went down for surgery to get an Ostomy and a few other things, she has a very sweet mom and dad that love her so much. We also saw a close (NICU) friend who’s one year old was sick. We love reuniting with these friends, it its fun to see how far they have come, and how much they have grown!
Thank you for your continued prayers for Charlie’s gut to heal and absorb nutrients well so we can move towards removing this central line.
Charlie has been so amazing! He is happy, playful, full of smiles, and SO cute! We were planning to go home today but the infection in his central line keeps persisting. The plan is to try to remove it the line tonight, and put a temporary line in until his body has a chance to heal, then they will put a new, more permanent line (like the one he has now) back in.
Please pray that…
The surgery would go smooth, and that the yeast would leave with the old line.
We could go home soon.
The doctors would start weaning his TPN (IV nutrition) so we can permanently remove the line.
Thank you all for praying! We are trusting the Lord, and we know He has a plan for Charlie and our family.
God IS good all the time, even though we have been re-admitted to “Hotel Childeren’s” due to a fever, we know it is in God’s perfect plan. Charlie developed the fever early on Wednesday morning, and because of his central line we have to go to the ER if his fever goes over 100.4 degrees (38.2 C). It was hard to have to bring him back to be admitted, and it was especially hard to leave the children early in the morning knowing that would wake up to find Charlie, mom, and I (Sarah) missing. However, God has been with us the whole time, he has put peace in the hearts of his little Fine children, and he is faithful to give mom wisdom, strength, and courage. I couldn’t even imagine what this would be like without Jesus, who is THE ultimate Healer, Physician, Counselor, Decision-Maker, Father, Friend and much more. When we got to the ER they drew blood from Charlie’s line to culture and see if there was any infection/bacteria. Charlie’s fever broke later that morning, but he had spiked four more after that, the last one being at 4am yesterday, we’re thankful he has not had one since then!
Yesterday morning at 24 hours (since his 1st labs had been drawn) one of the tests showed yeast in his blood. So far it is only showing up in his blood, not in the heart, eyes, or ears, or anywhere else- Praise God! As you all know we were here for eleven months the first time we came, so mom knows how this hospital system works. Slow. But many things were accomplished yesterday, thanks to JESUS! All day yesterday we had doctors and nurses coming in to check him such as, Pulmonology, cardiology, opthamology, GI, and wound care, he has had his eyes tested, an ECO done on his heart, labs drawn, lots of “big picture” Doctor visits, and many more. It was a very long day for all of us, but the Lord is taking care of us. There have been a lot of decisions to be made (some of them being hard), but our El Deah (God of knoweledge) is in control, and we will trust him to provide for Charlie’s needs! Sometimes there are fears that can come sneaking in when we are down, or not on guard.
Every day since we have been here, the Lord has put little things in my path that make me smile, such as a trisomy 21 girl making my omelet yesterday morning, or a very elderly gentleman laughing hysterically at a sign that said “Orange you gonna wash your hands?”, or seeing good friends that work here at Children’s, I’m just so thankful to the Lord for His goodness to us in that way. I loved God’s humor through that laughing man 🙂
Ever since Charlie first went to the hospital, I have felt a call to the medical field, and maybe more specifically nursing. I love taking care of Charlie, wounds, stitches, blood, and all that type of stuff. So, I know the Lord has blessed our family greatly by giving Charlie to us and forcing us to do things that we otherwise never would have done, and learn things that we otherwise never would have learned. He gave us an AMAZING little guy to help stretch our faith, trust, perseverance, love, courage, and boldness. It is Amazing to think how amazing and Awe-some our God really is! It makes me SO extremely humbled, and thankful that HE died on the cross for all of my sins, and that HE, the King of Kings, and Lord of Lords would come down to earth and DIE… for ME! He has been good to lead me (and us) through this, and teach me many things as we are and have been in the hospital. It’s a blessing to be able to have so much contact with people here, and to be able to share the goodness of God with them. As much as I don’t like Charlie being here, I love learning different things from different doctors and nurses about their skills and expertise.
Dad was in SD hunting with David, Daniel, Papa, Nonie, Uncle Paul, Calvin, Mark, and some more good friends when Charlie got sick. We are looking forward to their homecoming tonight!
Yesterday morning the Lord blessed us with a beautiful view out our room window, and a beautiful sunrise! (This picture doesn’t do it justice!)
Thanks for all of your prayers! Here are a few prayer requests:
-That the yeast in Charlie’s blood would be easily and quickly taken care of
-That yesterday mornings cultures would be negative at 48 hours, which would be Saturday morning. It would be miraculous if they stayed neg. until then. Then we could go home that day!
-That we could wean off charlie’s TPN so that the central line could be removed, which would mean no more infections, or ER visits with any fevers.
-That we would be able to bring Charlie home ASAP
Thanks for praying for our little trooper! More updates to come.