Marlee's Story

​For those who have been with us since the beginning we want to thank you for all your prayers and support. It has really helped us cope with all of this. For those just joining us, welcome. God Bless You All!

To keep up-to-date on Marlee’s story check out her Facebook page at Prayers for Marlee. ​​​

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For those who do not know us we want you to know Marlee’s whole story. But to do that we have to go back to 2008. In 2008 we traveled to Vietnam and adopted a beautiful little girl we call Savannah. She is now 7.  The social worker asked us if we were open to special needs. We had never really thought about it but decided that we were open to many including unknowns. We said that with unknowns (like with bio kids) we will accept what God gives us. Technically Savannah is a special needs adoption because she has a hole in her heart. 2 other families chose not to adopt her because of it. The hole is growing over and has been no big deal.

We did not want Savannah to be raised an only child. (She does have 4 older siblings, but they are in their 20s+). So we started putting our home studies out there at various agencies, consultants, and referral services. Two years (2010) to the date that Savannah was placed in our arms, our son Christian came to live with us. Christian is adopted through foster care. The county he lived in was having trouble finding a family for him. They had our home study on their list and knew that we were open to special needs so they gave us a call.

Christian was born at 26 weeks gestation and weighed 1.9 lbs at birth. He cannot see out of one eye due to a detached retina. We were told he was deaf in one ear and couldn’t hear well out of the other. We were told he had autism like behaviors. He now just turned 4 and he is not deaf. His Eustachian tubes had grown over so after putting tubes in his ears he hears just fine. He still can’t see out of one eye but the other compensated for it. He is the smartest little thing. He knew all the letters of the alphabet and the sound they made by 3 ½. And now he knows the lower case ones as well. Christian is now 6 and in kindergarten.

Now enter 2011. One of the places I had submitted our home study to was a Christian consultant services called Faithful Adoption Consultants (FAC). Courtney the owner had a facebook page that we had joined over the year before. In January 2011 FAC started posting for prayers for a family as they went to pick up their daughter. Then a couple of days later she started posting asking for prayers for the little girl because there was something wrong. Then she posted that to pray for the little girl because the family was not equipped for her special needs.

I posted on her page. She replied wanting to know if I was the Sara that had sent her my homestudy over a year ago. I told her that I was and she said “I have been praying for 2 days that you contact me, we do not have a family for this little girl and I know that you are open to special needs”. So we spent the weekend talking to the doctor and reviewing her medical records and searching additional information. But we felt this little girl was meant to be with us. So we let them know that we wanted to adopt her but that there were 4 obstacles in our way. But God removed those obstacles so we were ready to be her family.

I do want to say that her birth mother did not put her up for adoption because of the disease. She had already made an adoption plan for her due to the circumstances in her life. We see her once a year and honor her for the love she has for Marlee. I also want it be known that we also honor the family that had been set to adopt Marlee and for knowing that we all have limitations. I know it was a tough decision for them and I know that they still love her. 

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Marlee was born having seizures. She has a disease called Tuberous Sclerosis Complex. She had a large tuber/tumor in her brain. At the age of 3 to 4 weeks of age she had her first brain surgery to remove this tuber. She was the youngest TS patient they had ever operated on. This surgery was a 3 surgery process over the week. She did well with these and came home when she was about 2 months old. She was still having seizures but they were very short and about 5 to 10 a day. 

This is pretty much how her first year progressed -- seizures and treatments. Some might work for a few days but we never went more than 5 days seizure free. But Marlee was developing and progressing. She was behind but progressed all the time. At her first birthday she was at the level of an 8 to 9 month old but you could see the determination in her every day. And that little smiling face. But in March of 2012 she started having increased seizures going from 10 a day to 40+ a day. So she was admitted to the hospital and they started the process to have a resection done. The day of the surgery she had a fever. Ended up she had pneumonia. So we stayed an extra week in the ...hospital on IV antibiotics. The surgery was scheduled a couple of days after the 7 day round of antibiotics. The night before this surgery date she started running a fever again. She had the RSV virus. After she stabilized from that she was released to get healthy.

The surgery was scheduled again for May 22nd. They placed the grid that day. But on May 24th she stopped moving the right side of her body. They did a CT and she had a blood clot. So they went in a removed the blood clot and the grid. The plan was to release her and give her time to heal and come back in a few weeks to have the main resection done. 

However, she started having full body seizures that were lasting 45+ minutes. So we stayed in. After 2 weeks of this they went in and did the main resection. A few days after that her little head started swelling. They said this was normal. But she didn't recover her normal mental status and she was having many seizures. A few days after that, she became very lethargic and barely breathing.  They did a spinal tap and she had meningitis. The swelling in her scalp kept getting worse so they drain it. This was tested positive for MRSA. So her meningitis was caused by MRSA. The MRSA wouldn't go away. They kept draining it and it would come back. So they went into the scalp and flushed the area directly with antibiotic. They left a flush tube in and another to drain it out. They did this for a couple of weeks.

Finally on July 4th she was released. Because of the meningitis she pretty much was at the level of a newborn. She was improving slow but steady with physical therapy. She was at a level of a 4/5 month old thanks to the physical therapists. But since the surgery we have had a hard time getting her to eat. She was on the ketogenic diet. But she hasn't known anything else. There were days she seemed like she was in pain so we assumed from the brain and give her the pain meds. There were days she did well and days where she slept all the time. But the seizures were lessening and going away. 

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The surgery was scheduled again for May 22nd. They placed the grid that day. But on May 24th she stopped moving the right side of her body. They did a CT and she had a blood clot. So they went in a removed the blood clot and the grid. The plan was to release her and give her time to heal and come back in a few weeks to have the main resection done. 

However, she started having full body seizures that were lasting 45+ minutes. So we stayed in. After 2 weeks of this they went in and did the main resection. A few days after that her little head started swelling. They said this was normal. But she didn't recover her normal mental status and she was having many seizures. A few days after that, she became very lethargic and barely breathing.  They did a spinal tap and she had meningitis. The swelling in her scalp kept getting worse so they drain it. This was tested positive for MRSA. So her meningitis was caused by MRSA. The MRSA wouldn't go away. They kept draining it and it would come back. So they went into the scalp and flushed the area directly with antibiotic. They left a flush tube in and another to drain it out. They did this for a couple of weeks.

Finally on July 4th she was released. Because of the meningitis she pretty much was at the level of a newborn. She was improving slow but steady with physical therapy. She was at a level of a 4/5 month old thanks to the physical therapists. But since the surgery we have had a hard time getting her to eat. She was on the ketogenic diet. But she hasn't known anything else. There were days she seemed like she was in pain so we assumed from the brain and give her the pain meds. There were days she did well and days where she slept all the time. But the seizures were lessening and going away. 

What is the Marlee Factor?

The Marlee Factor was coined by the hospital Chaplain as we prayed for our gravely ill daughter. Pastor Susan asked God to not let the doctors forget the Marlee Factor. And that is it! The Marlee Factor -- that she is an individual (as is each and every one of us). Don't treat her as the "typical" patient/child. She is full of fight, determination, inspiration, faith, hope, strength, and perseverance. Don't discount the Marlee Factor in yourself and those you love either!

We believe that all the children have their own factor within them that allows them to fight the hard fight to live, grow, and have the best possible outcome. It might be the James Factor or the Connor Factor or the Madison Factor but it is there in each of these special children.

Marlee Today

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