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
Agency) 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 homestudies 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 homestudy 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 kindergarden.
Now enter 2011. One of the places I had submitted our homestudy 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.
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.
On Thursday August 2nd she was one week seizure free. We were so excited we email the doctors on Friday morning to tell them.
But then, later that morning Marlee we thought she was having a different type of seizure so we took her to her pediatrician and she thought she was too. So, we head to Cincinnati Children’s hospital.
Once we got to the hospital she was had very low breathing so we were whisked to trauma. After they stabilized her she was moved to ICU.
It was determined her problem is acidosis and pancreatitis and dehydration. Due to all this her it has screwed her up metabolically. The doctors feel it is highly probable that this is all being caused by the ketogenic diet though this is debated between the ICU team and the neurology team.
Saturday/Sunday morning she took a turn for the worse. The doctors told us to call in the family because she probably wouldn’t survive the next two days. She was now on a ventilator, she was unresponsive, her sodium level was over 170, her brain was filling with fluid, her chest was filling with fluid, her pancreas was no longer functioning, her kidneys were functioning at about 20%. The pancreas had caused many metabolic issues. She was in a coma.
By Thursday, many things had at least stabilized. But as the doctor met with us again, he basically wanted us to be prepared for her never to be any better than she was at time.
Yes, 9 days later she was out of the coma. Soon she was off the ventilator, most of the lab results returned to normal, they removed the chest tube, MRI and CT of the brain shows no brain damage. They were dealing with why she is so swollen. She had gained over 11 pounds in fluid. She also was having glucose issues. She may always be a diabetic.
She finally left the hospital in September with a nasal feeding tube, and as a diabetic taking insulin shots. At the November follow up appointment we were told that if she wasn't taking food by mouth then they would put in a feeding tube in her belly. By December, Marlee was off the feeding tube, taking her food by mouth. But thankfully the pancreas had started functioning enough to support her current body weight. So no more insulin! We were told the pancreas may stop working again as she grows but for now insulin free.
Slowly she is gaining skills. She still has several seizures a week but only God knows what he has in store for this little girl.
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!