Hopefully the final update on Naomi :)

Family and friends, we wanted to let you know of some great news!
So, as some you know, we had an appointment with a geneticist down in south Florida on the 4th and wanted to write and let everyone know how things went. We met with Dr. Benke and part of the way through the appointment he stated that he felt like he knew what was going on. He said that, based on the labs and our explanation of what we’ve been dealing with the last year, he felt like Naomi’s body is having difficulty processing an organic acid called Glutaric Acid. He was really straight up with us that he was giving us a presumptive diagnosis, but said he felt strongly that this was what was going on. The only way to definitively diagnose this disease is with a spinal tap, but since he didn’t feel like Naomi’s case was severe enough to warrant that, he told us to decrease the amount of protein that she gets in her diet and she will start taking something called Carnitine which is used to detoxify the brain. We had some more labs done today to cross off a couple of other things that could possibly be causing this and will be talking to Dr. Benke on the phone or via email when those results come in. Even though this is another presumptive diagnosis, we feel like this is the first time that a Dr. looked at us with certainty and told us what we were dealing with. He taught us how to treat it, expected it to be dealt with in this manor, and gave us instructions to determine if his assessment was wrong. He’s been in this specialty for 35 years and told us he was confident about this diagnosis and hoped that with this treatment we could avert the spinal tap and see our daughter well. He also finished by giving us a website that had 25-30 different metabolic specialists in Brazil that we could work with and was willing to communicate with them. We want to thank you all for your prayers and for being with us as we are continuing to walk this crazy journey. This is the first time that we have had a peace about a diagnosis and felt that everything Naomi has been going through was explained. We are very excited to be in this position and are thankful to have you all praying in our corner.
We love you all!!!
The Mersingers

Ode to the Boy

Anyone who knows us, understands that this year has been a difficult year for us. It's been good, much growth, much maturing, a tightening of our bonds as a family, but still hard! Most of that has centered around the challenges with Naomi's health. It's placed us in a position of ambiguity where we have to constantly remind ourselves that we do trust One who knows no ambiguity. With that said I wanted to celebrate someone special to us and make something clear that we haven't communicated well.

It could be possible that, with all the attention placed on Naomi, some might wonder if that little blonde boy in the pictures gets left out. Any of you who have had the pleasure of being geographically near to us know that such a reality is not a possibility. For those of you who haven't been around us much, I wanted to take some special time to celebrate our son, Caleb Samuel.

Many of you know that I wanted all girls. Not because I don't think boys are awesome, but because I was scared to be a father to a son, scared of my own insecurities, and frightened of my own inadequacies. I knew the strength of love and affections I held for my daughter, but feared that I would not know how to be the same for a son. My father and I had a horrible relationship growing up, it's gotten really good as I've gotten older, but I know that I'm capable of the same things my father was and feared to pass it on to another son of another generation. I fought that fear and laid it before the cross and begged for help, but still was unsure and afraid that I would fail this little life that popped out onto the back seat of my van on September 14, 2007.

The events of his birth endeared him to my immature, adventure-seeking, having a good story to tell persona, but the insecurities were still there. I had said with Naomi that children have an uncanny ability to root out your deepest insecurities, baggage, and issues and toss them out on display for the whole world. You can either hide from it or deal with it. With Caleb there was already so much bound up in me to be tugged at, and it didn't help that he came out looking like the mailman's kid. Thank Jesus I was a mailman at the time :). His first few weeks he was so much more difficult and couldn't keep food down. He vomited after every meal and left Shannon and I crying and exhausted, worried about his growth. He seemed clingy to Shannon (like most kids are to their moms) and I felt like he wanted nothing to do with me, which I recognized as a manifestation of my own baggage rather than any reality in the mind of an infant. In the midst of exhaustion, frustration, and worry it seemed like I was pressed with many excuses and reasons to reject him, to refuse to love, or to love with less intensity than I knew I was capable of. Every bit of selfishness was pressed with seemingly reasonable options for holding back, withdrawing, and writing off.

There have been many times in my life that I've known I was capable of horrible things, but since I've started to try to walk with Jesus, I've seen the reality and possibilities of what I'm capable of, are no match for abandonment to, and trust in, the One who is molding me into someone capable of love, especially love for others. I know what could have been, what hardness could have done to the bonds that I longed for with my son and now have realized. That would have been a different blog. As it stands, by grace, I set out to win my son's love. To pour out my heart for him and let it overflow even if I risked another bout with rejection.

When I began to stay home with the kids, Caleb was just about a year and a half old. It was a challenge with the two of them, much harder than when I had stayed at home with only Naomi during school. I began to notice the fears fading, loyalties arising, love strengthening. I knew I wanted a bond with my son that was healthy, strong, and affectionate. I recognized that I truly believed this only happened in movies, but at the end of the day it must be a reality that God longs for in all humanity. If we were meant to bare His image, and He is One who displays unconditional love for His Son, then could it be possible that He can enable us to represent His image by bearing that out?

As time went on, I began to see so much of myself in Caleb. Though we look nothing a like, our personalities are so similar. He is such an emotional being, fiery and passionate, but lacking self-control. I think that exact line was written on my Kindergarten report card. He is sensitive and caring, yet simultaneously guarded and defensive. I feel like I have such insight into how to love him because I understand how he wants to be loved. I understand what his fears are and why he gets confused. I understand what needs to be said even if it is not always what I want to say.

The hardest thing is recognizing how much he watches me, how he always sees what I am doing. He sees me as an example, but does he know how much I DON'T have it together? There's part of me that wants to try to "pull it together" to be an example, but more often I've simply sat down and shared with him how I struggle, then watch his 2 year old mind spin, relate it to a movie he likes, and compare it with how he doesn't want to stop punching people.

There is so much to this kid, more than words could write. As his 29 year old father, I rejoice sometimes when I look at him and see a 2 year old that is often more content in his identity than I am in mine. I thank God that I've had a role in that and pray that it remains so through elementary school, puberty, and the discovery of girls. Not that who he is is perfect, but that he knows where he is at in such a remarkable way.

Perhaps the best way to finish this celebration is to share a story and a picture or two. Caleb is sensitive and sweet, but he is also a warrior. It's a good thing and a bad thing, but in this case, a freaking adorable thing. He received a boppin bag for Christmas. He was not overly impressed, it was a piece of plastic in a box the size of a deck of cards. It took me about 45 minutes to get it blown up correctly (I didn't know you needed a water or sand base and couldn't figure out why it wouldn't stand up). He still wasn't overly impressed but came at my begging. I told him to punch it, and he did nonchalantly. As the bag rose up to meet him . . . here is what followed . . .

New Naomi Update

I'll try to keep this quick but comprehensive. Naomi had another episode on Wed, which started with her getting weak and then she had a seizure. When we called 911, she was already coming out of the seizure, but was transferred to Sarasota Memorial Hospital. We had spoke with her neurologist previously about the possibility of going down to Miami to meet with a geneticist there. They were unwilling to transfer Naomi to Miami because of the distance, so she was transferred immediately to All Children's Hospital. Unlike the other hospital trips, this time they began an EEG within an hour of arriving at ACH. This was the quickest EEG after an episode we have had... before this the earliest had begun 24 hours after the episode began. As we expected, the EEG showed nothing abnormal. Essentially nothing was "found" but some of the question marks were more definitively ruled out. They discharged Naomi last night and Caleb and I picked her and Shannon up from the hospital.

At this juncture we have a couple of things left to pursue. The geneticist at All Children's was not a specialist in metabolic genetics, so we still need to meet with the geneticist that our neurologist wanted us to consult in Miami. This is to rule out a couple of different possible genetic metabolic disorders. In addition to this, our neurologist at All Children's thinks there is a possibility that Naomi may be struggling with something called Alternating Hemiplegia of Childhood. It is a rare neurological disorder with less than 250 diagnosed cases worldwide. There is little research done but all indications are that it is not terminal and does not lessen life expectancy. The range of experience for people diagnosed with this is extremely varied, but many of them experience episodes that last for days or weeks (which is not the case with Naomi). There are several things that don't totally connect with this diagnosis, but will be researching a bit more about it and will bring it up to the geneticist when we see him.

We're kind of kicking ourselves for not following the food sensitivity diet more strictly during Easter, because then we could have ruled that out as a significant factor. As it stands, we feel strongly that we're on to something with the LEAP food sensitivity results. It may not be that any particular food is "causing" these issues, she may very well have some type of neurological disorder that we can't pinpoint. However, the LEAP test measures the reactivity of her immune system to particular foods. It may be that in exposing her to foods that weaken her immune system, it allows for more severe manifestations of this disorder... who knows? In either case, this provides us with a stronger motivation for sticking to these findings. The dietitian that was sent in to us at All Children's had never heard of LEAP but encouraged us to stick with it strictly if we noticed two months straight with no episodes or symptoms.

Thank you all so much for your prayers! We have felt strengthened throughout this particular event. We're a bit stressed but don't feel like a crash is coming, so please keep praying. After these hospital visits it normally seems like it takes two weeks for life to "reset". We're not feeling like that's the case right now, as we're doing pretty good right now and we're hoping it won't be like that this time but please keep praying. We are in Orlando right now for probably our last visit with many supporters and friends. Please keep praying as we press on towards Brazil and remain diligent in following out the process of obtaining all that we need to in regards to these issues with Naomi. Shannon and I were just remarking as she began walking around this morning sharing new toys with her brother, deciding which of her new toys could go to which of her friends when we leave for Brazil, and asking us significant, meaningful questions about these recent events; that each time she goes through this, she comes out more mature and stronger than before. It still scares the poop out of us when it happens, but we're thankful for Jesus' mercy in the midst of it all. As she was coming out of the seizure at the hospital, she began to cry out for Jesus to come. She's so young and has been through so much, but it is a mercy to know that in the midst of this she's already learning where to turn as she lies in the depths of darkness!

We love you all and are thankful that we have so many wonderful people who are choosing to live life with us -

The Mersingers

Natal Alegre e Ano Novo Feliz! (Merry Christmas, and Happy New Year)

We have had a pretty busy month since we talked to you last, as we were out of town from Nov. 30th - Dec. 18th for training at the Missionary Training Institute outside of Colorado Springs. We will be sending out a newsletter next month that will give more details about the experience, which was amazing... we want to recommend it to everyone, even if you're not going on the mission field overseas :) Since we have been back, things have been busy with Christmas events and seeing family, so we're thankful to be able to rest these last couple of days and continue processing more of what we learned in CO.

The month of January will be mainly spent support raising as this is the last thing we have now keeping us from leaving for the field. We are at approximately 65% right now and we will be able to leave as soon as we raise at least 85%. We do not have any time constraints for when we need to leave, and will be able to buy our tickets as soon as the support comes in. We're shooting for being in Brazil at the end of February, but we have learned many times before that the Lord's timing isn't always the same as ours, so we're continuing to press into the Lord and wait on Him as we share with others how He is at work in Brazil. We have a couple of invitations to speak in January, but welcome any opportunities to share at small groups, Sunday schools, in churches, or even if you know individuals who would be interested to hear. Thank you to those of you who have spoken on behalf of us to your missions pastors and churches... we have felt so loved by you, our supporters, friends and family!

If you are looking for a ministry that needs your last minute tax-deductible gift for the year 2009, you've got a lot of great options... and we encourage you to give to them with joy! If you would like to make a last minute donation in 2009 to what we'll be doing in Brazil, the easiest way would be to donate through our website at www.themissionsociety.org/people/mersinger. At this time, we are thankful to say that all of our pre-field needs have been met and we are mainly in need of monthly or even yearly commitments, which will get us to and keep us on the field.

Thanks so much for your encouragement throughout this past year! We look forward with excitement for what lies ahead in this coming year!

Peace

The Mersingers
mersingerzoo@gmail.com
941-485-3901
941-234-7321 (Boost Mobile, do I need to say more?)
www.themissionsociety.org/people/mersinger
www.mersingerzoo.blogspot.com

How quickly they grow!

So it has been forever since I've written on here and I'm determined to be better about it... and I started several blogs a month or so ago, but because my life is crazy I never finished them, but I've decided to post them anyways, and from now on I may just post partial postings that I can come back to later, but at least I'm posting them. Thanks for being patient with my ramblings!

OK, this was from right before we left for CO (mid Nov.):

First of all, I think Caleb totally spoke (or sang) prophetically into my life the other day. He was outside on the swingset, playing with Naomi, and out of nowhere started singing a song from the movie, "Joseph, King of Dreams." The words he was singing were as follows:
You know better than I, You know the way. I've let go of the need to know why, 'cause you know better than I.

As he was singing the song, I felt the Lord say to me that He's bringing me to a place where I'm getting a deeper understanding of what that means for my life. For so long I've been questioning why God has been saying "not yet" to me in regards to following my call to become a missionary. In hindsight, I've seen several things that have given me glimpses of why He's kept me here for this time, but it never fails that the next time I think it's time to go and He continues to say "not yet" I get crazy and wonder if I'll ever get on the field.

In thinking over that movie (and reading through the life of Joseph), I was humbled when I try to even compare my life to his. It caught me for the first time that Joseph felt called to great things... he had dreams about God raising him up to do great things and not only did God not do it like Joseph probably imagined, He probably did just the opposite! Thank you, Lord for speaking to me through my 2 year old!

Newsletter

We just finished our summer newsletter and I'm not sure how to upload it onto this blog page, so check it out at our Mission Society page:

http://www.themissionsociety.org/people/mersinger

All of our newsletters are on the top, right hand side of our webpage. Also, if you aren't currently, but would like to be, on our mailing list to receive our fabulous newsletters and other exciting updates from us, just shoot us an email and we'd love to add ya to the list so we can better keep you in the loop. Thanks for reading!

Peace -

Shannon

She's Doing Great!

We wanted to give a comprehensive update of Naomi for those of you who are interested in the whirlwind of "information" that we call modern day healthcare.

Many people have asked us about our thoughts on the spiritual dimensions of what was going on with Naomi. The way that we see it is this: whether she was visibly seeing evil spirits, or simply wigging out because of a medical condition, there was a spiritual assault taking place. We have no problem believing the former, and lean towards that as an assessment. But in either case, the presence of fear, confusion, frustration and discouragement we went through as we approached this issue with deep concern for this precious gift we've been given in Naomi; was wearing us down and challenging us. Thank you all so much for your prayers! We firmly believe that Naomi experienced the power of God and the abundance love of Jesus right in the midst of her struggle.

The pediatrician has ruled out everything from her end. The pediatric neurologist said she is 100% fine and canceled the MRI after getting the results of her EEG. Her blood work showed slightly abnormal levels of testosterone (which was deemed unrelated to the issues at hand) so we were sent for an ultrasound which turned out negative (which is positive, ha). The pediatrician's assessment is that she is fine now and nothing was discovered.

The natural doctor, we had mentioned, believed that she had dealt with some type of virus previously that had caused blockage and buildup of toxins in her lymphatic system. The blood work that was ordered by the pediatrician was also sent to "Dr. Dave" for analysis. He highlighted that the blood work showed that Naomi had been in contact with the Epstein-Barr virus. We assume that the pediatrician didn't mention this because she did not currently have high levels of the virus and that by the age of 40 every person has come into contact with it. Apparently, most children do not experience symptoms other than a slight fever. However, some children do experience extreme fatigue, confusion, and some of the other symptoms that Naomi was experiencing physically. His assessment was that this was the initial infection that led to the backage in her lymphatic system. Within three days of taking the supplements that he gave us her symptoms were gone and her "big boob" began to become a normal boob (which is kind of sad to us in some sense, like if Nemo's fin became normal it wouldn't be his lucky fin anymore).

The bottom line is that Naomi is her self again. She has so much energy again, she has barely napped for the past month. Some of it is her age, but we think some of it has been her going from being exhausted all of the time, to feeling better and having her energy back. She still doesn't like to talk about the "things she saw". Some of ya'll have suggested us asking her to draw pictures and get it in the open so that she will talk about it. We still think it's a good idea and we tried to employ it; but she was very clear with us that she doesn't want to or need to do that. She said "Jesus took care of it guys, and I don't need to talk about it anymore!" She has quite a personality, thank you all again for your prayers and encouragement!!!