North Brookfield Baptist Church, NY

Levi had a good day today. Our local MNRI therapist was impressed with the improvements we are seeing from the conference. His tone is better, his cough is more... productive, his breathing is better, and his neck strength and control is noticeably better. Things will continue to build one on top of the other as we keep doing the work at home. Tomorrow will be a day of rest for Levi and Sunday we head to Texas for the week. Excited for the things we are doing to keep building on top of one another. Thanking God today and everyday for healing Levi.

I am doing fine, but must have passed out and fell on my face. ( The picture looks worse than it is) Testing, testing, testing at the hospital. Can't find any c...ause. Hope to leave tomorrow. Just a chipped tooth, a few stitches, broken glasses and lots of questions. I know God Is with me. Trusting Him. Prayers always appreciated. The Lord reminded me "Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father's care." See more

The heaviness weighed on me hard this evening. Our 3 other kids are at Connor’s baseball game so it allowed me time to just cry. To think about every memory and... just let the tears fall. Sometimes doubt creeps in my mind and the thoughts of Is he healing? Can he heal? Am I doing enough? Am I doing the right things to help him? take over. It becomes overwhelming and suffocating. I’ve learned that when my thoughts start to unravel the only thing I can do is pray. Pray to the only one who can take this pain and doubt away. Praying gives me that retuned sense of peace and the hope that Levi will be okay. Every day is such a yo-yo of emotions of pain and sadness to hope and gratitude. We’ve had so many beautiful things happen this week thanks to this community that supports us but our pain is still very present and all I can do is pray Levi will heal. But despite my heart today, I’m happy to say that Levi has had a good week. He is sleeping great at night, his days are getting better- longer periods of being calm and not agitated, he is handling sound much better, and his posturing is much less throughout the day. His cheeks are starting to fill out again. Now that he is not storming all night long his body can rest and isn’t burning all of his calories day and night. It’s so nice to see those sweet cheeks again . We have added to our team for Levi here locally. Adding in a speech therapist to help us with feeding and a optometrist Dr. Mary VanHoy who focuses on visual rehabilitation. She is also lending us some glasses to try for Levi to see if they help as we wait for his glasses to come in . We were also able to visit Dr. Brad’s office this week where he worked to try and get Levi’s muscles to react and move. And of course Levi is still getting his adjustments by Dr. Nancy but she is now able to come every other day because his body now feels and adjusts like a typical toddler . We are gearing up for a lot of upcoming travel with Levi this summer. I’m both excited and anxious. Excited to continue the work to heal his brain but sad to be traveling again away from the other kids. Over the next 2 months we will be going back to Orlando for an MNRI conference specifically for kids who have suffered near fatal drownings. While in Orlando we will also have Levi evaluated by the plasticity center. We will be going back to Austin for a week with Dr. Crawford at the Austin Center for Developing Minds. Then we will be traveling with Levi for another stem cell treatment. We will be home for a few weeks and then go to Arizona for 2 weeks for an intensive movement therapy and will hopefully do neuro acupuncture as well. I’m so thankful to everyone who has reached out to help us look for lodging. Nothing has been locked down yet but we have a lot of leads. We hope to bring all the kids and a nurse with us to Arizona so that we can be together those 2 weeks and then my sister is getting married in Michigan and we want for the entire family to be able to go there as well.

Motherhood is hard. The only thing I ever wanted to be was a mother. From probably the age of 11 - the wish I would make when I would blow out my birthdays cand...les was to have healthy children. What 11 year old makes that her birthday wish? It’s all I ever prayed for -in my heart I always knew I just wanted to be a mom. You may not know this, but I have 5 children. In 2013 I was pregnant with our first child. So on Mother’s Day in 2013 we celebrated Mother’s Day in anticipation of it being my first year as a mother but then 2 weeks later I miscarried. We lost our first child. At 16.5 weeks my body spontaneously went into labor. By the time I got the hospital our baby had passed away. Scott was out of town and drove 13 hours through the night to get to the hospital. Once Scott got to the hospital, I delivered our first son on May 25, 2013. I was so confused, so hurt, so heartbroken over the loss of our first child. There was no explanation as to why- it just happened. We had called the baby C.C. up until that point- planning to make him Charles if it was a boy and a different C name of it was a girl. When we found out our first child was in fact a boy- it only seemed right to keep his name C.C. since that is the name he knew when we talked to him as he was growing inside of me. Connor was then born in May 1st, 2014. He was 3 weeks early, allowing me to to celebrate my next Mother’s Day with my baby home and in my arms. So many mixed emotions on how to honor the life of C.C. and celebrate Connor. Two years later, Charley made me a mother again. But it was another birth with extreme sadness and confusion. We weren’t expecting the medical complications, we weren’t expecting her to come so early and we weren’t expecting a 105 day nicu stay. Again, I was so hurt, so confused. Why did this happen? Again, there was no explanation- it was a spontaneous deletion on the 22nd chromosome. But our girl survived and we vowed to give her nothing but the best. She flourished, defied all the odds and is such a blessing in our lives. Then the beautiful surprise of our twins. We were so excited but also scared. How were we going to manage twins on top of a medically fragile child? How would we juggle it all? I developed a severe case of preeclampsia and had to have an emergency C-section at 34 weeks. They were early, they needed to go to the NICU and my PTSD was so bad from my experience with Charley. They had to work on feeding in order to be discharged from the hospital. I remember crying everyday and praying please let them know how to eat, please let them have the skills so they won’t need g-tubes. They were only in the NICU for 13 days, they were okay, they ate from their bottles and were perfectly healthy and then life began with 4 kids 4 and under. Scott and I haven’t slept in years. Connor was a bad sleeper and I didn’t have the heart to have him cry it out. Then Charley came and her medical needs kept us up all night. Then we had twins and a medically complex child so sleep was basically the last thing we had time for. But none of that mattered. My heart was so full, our life was as perfect as could be. I was the luckiest mama in the world. Everything I had hoped for and prayed for was there under our roof. My precious babies that I got to love. I wanted nothing more than to be there mother and be the best mother. To make sure they knew each and every day how loved they are and how thankful we were that they are ours. Then 11/28 happened. My life shattered before my eyes. My heart broke into a million pieces. Everything changed over night. But my vow remains the same to my children. To do everything I can for them, to love them endlessly, to make sure they know they are our everything and nothing will stop us from trying to give them the best. Today was hard. But I held all of my sweet babies today. It was different than the joy I felt last Mother’s Day when I held my babies and got kisses and hugs from all 4. But I was able to hold all 4 of my babies and I thanked God for that. So today if you felt joy, I thanked God for your joy. If today you grieved, I prayed God would comfort you. If today you asked why me?, I prayed God would show you answers. If today you wanted to crumble, I prayed God would hold you up. But I hope most of you felt love and happiness this Mother’s Day, but if the day felt different than it should- just know you weren’t alone. And although my day was filled with mixed emotions- they all gave me their love and Levi gave me the best gift of all- another reflex is returning and he showed me that today . Happy Mother’s Day

A fellow twin mom, Paige Housner, heard our story through through social media and felt called to help us. As an avid runner, she knew she could use her gift to... help us, and planned the Light for Levi run. She put in countless hours responding to messages, designing the medal, and personally buying and shipping the medals all across the country. She drove from Michigan to our home yesterday to personally deliver the money that was raised. 3002 people signed up for the Light for Levi run and I know many more did it on their own as well. It was incredible meeting Paige yesterday, I felt like I’ve known her for years. Another stranger turned Angel and forever friend to us. Her planning this event has given us the resources to continue to get Levi the treatments he needs to help him find the light again. We are so thankful for her organizing this event and for everyone who participated. I’m overwhelmed by how blessed we have been through this time. This is just one of the many fundraisers that have been held for our family. So many of you are using your gifts and talents, dedicating your time and energy to help us during this time. Honestly, I don’t even know the right words to thank you all for supporting our family. But please know how appreciative we are. Every dollar raised is giving us the opportunity to help Levi and I thank you. I feel every emotion all at once. It’s gratitude, it’s heartache, it’s uplifting, it’s draining, it’s feeling blessed, and feeling broken and everything in between. Feeling so much love coming in to us when we are so shattered is such an overwhelming feeling. But at the end of the day, I think to myself in our darkest times we are surrounded by light and where there is light, there is hope. You all are our light. The light for Levi is coming from this community. You are keeping our hope alive that Levi will heal. Thank you, thank you, thank you.

Levi’s optic nerve is pink and looks healthy!! The brain damage did not affect his optic nerve. That’s the best news we could have received today! PTL!! We are ...going to get him glasses to be sure the images up close are clear and pray as his vision strengthens he won’t need the glasses long term. Thank you for all the prayers this morning! One more step in the right direction! See more

We have been blessed with so many angels on this journey, so many kind people that are helping us to survive this time in our lives. Can I tell you about anothe...r one of these angels? Her name is Angela and is a physical therapist. She had heard our story and she and I share a mutual friend. She asked her to reach out to me to let me know that she’d be happy to come and help with Levi. I talked with her and said I’d love some help as I knew how important it was for Levi to get the care he truly needs right now to recover. Angela volunteers her time and comes Monday-Friday 9am- 2pm. She spends 25 hours a week us. A complete stranger that offered her time and skill to help my Levi and now, I couldn’t imagine our lives without her. I thought she would maybe come a few hours a week, never did I think she would so graciously and generously devote so much of her own precious time to Levi and our family. She is so good for not only Levi, but me as well. She walks in and can just tell if I’ve spent my morning crying or if I’m doing okay. She jumps in knowing just what to say and ready to help us with whatever we need. She is allowing me to try and keep my family life running as smoothly as possible. I honestly don’t know how I can properly thank her for all she’s doing for us, so for now I’ll just tell the world how wonderful you are and how much we love you . She also helps during Levi’s MNRI therapy sessions while I am with Lainey and Charley. They had a really good session today, so I asked her to summarize what all they saw. My heart needed some positive news today and they definitely had a good report to share. Though Levi has been grumpy, he had an amazing session with his MNRI therapist. She believes he is TRULY waking up. Not only has his postural alignment improved, but so has his tone and his eye contact. She noted that his tone was pretty much like that of a baby (which is great because in the past his tone was usually very stiff.). And that he was blinking (or attempting to blink)every 3 to 5 seconds which is a really good sign. This, too, is a reflex and an example of waking up. The biggest ‘wins’ today was Levi was able to segmentally roll to the right and to the left with assistance. This is the first time Levi has shown active movement intentionally and purposefully 3 TIMES!!! (if you’ve never done a sit up, imagine doing it three times and how much work it is and how tiresome it is. That’s what Levi accomplished today!) Levi’s startle reflex is also improving! He is starting to catch himself and preventing the stiffness and increased tone from occurring. He’s becoming aware of his surroundings and able to break the pattern. This is HUGE!!! So it was definitely a good report from his therapists today. Even though he has been fussy this week his posturing or storming has been SO much better. Last week it was occurring 75+ times a day - today he maybe did it 10 times. He is starting to become aware of his body again and it is evident. He is also getting 6 teeth right now which may explain his fussiness- I’m sure it doesn’t feel great on top of everything else he is going through! Pray that we can get him back to a place of comfort. Awake, aware, and happy would make for such incredible days with our Levi. Keep praying that his body and mind are reconnecting and that the posturing stops all together. And to everyone reading this, thank you for also being an angel in our lives - you all are supporting us during this time and we are so grateful.

Here is a video from Nate and Karol Watkins concerning their on- going prayer request regarding the need for a building for Repentance Baptist Church on Staten Island. Please prayerfully consider what you can do to help. https://www.youtube.com/watch?v=yWIUjG1bRHE

Today for the first time in almost 5 months, Levi moved his eyes to me when I was talking to him and made purposeful eye contact. I felt it in my soul. He truly... moved his eyes and looked at me for the first time since the accident. It made me cry, it made me rejoice. It fueled my soul. The good days are starting to string together. He is becoming more aware. He is startling and posturing fewer times throughout the day. He is sleeping at night. God is working. He is the Way Maker, Miracle Worker, Promise Keeper. Thanking Him tonight and every night for Levi’s healing.

Great visit and reminiscing about Cameroon. Fun to see the Seely family today while in Virginia Beach. Feeling rather short hanging with this family.

We were happy to learn from the EEG that Levi’s posturing is not a result of seizure activity. However, he has dystonia which is involuntary muscle contractions.... It’s painful and tough to watch his poor body suffer like this. So now we are on our quest of finding the best solutions to help this. I feel so blessed to have the team around us that we do, all searching high and low to figure out the best options to help Levi recover. On a positive note we are starting to see more of his reflexes coming back. Glimmers of hope as we continue on this journey. We have seen his rooting reflex and grasp a few times this week.

Good Morning! Our neurologist was able to gather enough information from the EEG to develop a plan so we are getting ready to go home! I’ll update more later on... what we think is going on. But what I wanted to share is that he woke up ready to eat this morning! A very good night of sleep and he was ready to go this morning. Ate about 1/3 of the cup of applesauce! . Thank you for your prayers, keep praying Levi Wakes Up!!