the beginning of a beautiful story

This week we traveled up to Ohio for Maddox to have his first visits with our new neurologist, Dr. Wong* at Cincinnati* Children’s. If you are wondering why in the world we chose a neurologist so far from home then let me be the first to tell you. Simply…because she is who we consider to be the best at what she does. Every.Single.Day neurologists tell parents who have just gotten a Duchenne diagnosis that there just isn’t anything they can do and to go home and love them. Sound crazy? Yeah..it pretty much happened to me so I can vouch for the fact. First of all there ARE things we can do and especially after today I feel more empowered than  ever to care for my son and advocate for his needs. #mamabearhere
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So, today was day one of two days of appointments here in Cincy. We first met with the physical therapist who checked M’s range of motion. She showed us how to do the stretches he needs every single night in order to keep him loose and so he doesn’t lose his range of motion so quickly. He will lose it but at least this will give us more time. We got the order to have his AFO (leg braces) made. He will wear these every night. Basically this keeps his ankle pointed up at a 90* angle while he sleeps. Again, with the goal of keeping that range of motion. That’s our biggest goal right now because as he starts losing it he can’t keep balance, and if he can’t balance then he loses the ability to walk as his muscles weaken. Overall she said he really is doing well and we were so thankful he tolerated all the pushing and measuring with out so much as a whimper.

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Next, we encountered a little God wink when we met Dr. Lee* who is interning with Dr. Wong*. Get this…she is from Korea and came here to study under Dr. Wong* so that she can go back to Korea and start a multidisciplinary clinic just like the one at CC. She totally gave Maddox the VIP treatment. She tried her best to engage Maddox by talking to him in Korean ; ) Bless him he had no clue what she was saying but I think he was intrigued. I wonder what was going through his little mind?? She even let him watch Pororo (Korean cartoon) on her cell phone.

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Anyway, Dr. Wong* did her exam and then timed Maddox getting up from the floor, climbing stairs, and running (his favorite). She seemed to overall impressed with his ability which was encouraging to us! We talked about our treatment plan and giving him a few more months before we start on steroids. That will give him a chance to grow a bit more because the steroids tend to stunt growth and he is so tiny as it is (less than 10 percentile). A huge answered prayer and a big weight was lifted off of my shoulder when she said that we did not have to do a muscle biopsy this visit. It’s just a really invasive procedure and painful. Praise God he spared Maddox on that one!

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We covered an in depth look at the error in his dystrophin gene. I mentioned before he has a point mutation in exon 36. We learned more about what trials are in the pipeline that will be able to help him should they receive FDA approval. Overall we covered way more information than you would ever care to hear here and she spent over THREE hours with us answering all of our questions. And we had quite the list….

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We absolutely know that coming here was the right decision for our family. I would encourage anyone whose child was recently diagnosed with Duchenne to do your research and don’t let anyone tell you that there is nothing you can do. There may not be a cure and this may be a terrible, awful, no good disease but there is ALWAYS hope!

Tomorrow Maddox will have his EKG and echocardiogram. Originally we were told that because of his age they would put him to sleep for the procedures. However, because of how well-behaved he was today she said she saw no need for that. Y’all he was a ROCK STAR! Another praise for that!!! We will also meet with the cardiologist on the team to discuss typical progression of the heart in Duchenne. Every step of the way we have received confirmation that bringing Maddox here was the right decision and are so grateful that God opened doors for us to be seen here and under the care of the best doctors in the country for this disease.

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I held it together all day except when we talked about the level of care for Duchenne boys in Korea…and I just had this moment where God whispered to me, “for such a time as this..” I know that if he was diagnosed when he was in Korea it is so likely that my son would have been institutionalized. And I broke down. God is good. Do you hear me?? I cannot even wrap my mind around what He has done for our family. Trust me when I tell you that when God calls you to something He is going to prepare you for it! If you asked me five years ago if we would ever adopt I would have laughed. 3 years ago… if we would ever be able to raise a child with a terminal illness? I would have said that I wasn’t strong enough. And yet here in the midst of this crazy storm I look at my son and I KNOW that I KNOW that I KNOW that he is mine and that God chose us for this battle. Ironically, I would still say that I’m not strong enough. But you know what? I know  the ONE who goes before me and in my weakness He is strong. My son has Duchenne Muscular Dystrophy. He may lose the ability to walk, to use his hands, to breathe on his own but GOD is still good and no matter what we will praise Him through this journey. It’s going to be a beautiful story.

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An Answer

A little update on our family.  Since March we have been waiting for a diagnosis of our sweet Maddox who had elevated liver enzymes during his routine blood work when he came home from Korea. A follow-up check 6 months later was also elevated. Several rounds of blood work later and 2 DNA tests (one taking 3 weeks and one taking 7 weeks) we now know that he has a form of muscular dystrophy called Duchenne (DMD).

This is caused by an error in his dystrophin gene in his DNA. Dystrophin is like the glue that holds your muscles together. In the dystrophin gene there are 79 exons. For explanation sake, let’s pretend that the gene is a paragraph. Each of the 79 exons are words in that paragraph. Maddox has what is called a point mutation in exon 36. So, basically in the 36th word of his paragraph he is missing a letter (or a letter has been added to the word). Isn’t it amazing how one tiny little letter can change your life?

 

{Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength.

Boys with Duchenne may develop later than children of the same age—for example, speaking, sitting up, and walking. Cardiac problems eventually occur with Duchenne and may start early or during the teenage years. Typically, boys with Duchenne lose their ability to walk between the ages of ten and fourteen. By their late teens, young men lose the strength in their upper bodies, including the ability to move their arms. Also during their teenage years, young men with Duchenne usually need help with breathing at night. Over time, their breathing or respiratory systems weaken, and they require constant support.}

 

At this point in time, there is no cure or treatment that can stop the progression but there are many treatments in clinical trials that the Duchenne community is very hopeful about.

On September 3rd we will be traveling to *Cincinnati Children’s to meet our new neurologist and will also be seeing a team of cardiologists, pulmonologists, physical therapists, etc who will discuss M’s diagnosis with us and come up with a plan of treatment. He will have a possible biopsy at this time also.

 

All that to say strangely, we are relieved to have an answer and are prepared to fight this battle with our sweet boy! We are thankful for a God who loves and cares for him even more than we do and we trust in His plan for our son’s life. It’s going to be a beautiful story.

 

 

Two Weeks Home

There are times when I glance in my rear view mirror and see his almond shaped eyes that I’m completely overcome with emotion at the fact that he is really is home. Then there are times that it feels like he has been with us forever. To say that we have come far in the past two weeks would be an understatement. We have come FAR!  Looking back on those first few days in Seoul I can see now what a sad boy we had…even in pictures he doesn’t look like the bubbly, sweet Maddox that runs up and down the hallways here now. It’s amazing to see his progression and we are so happy to know that he is starting to feel like this is home.

We had a small setback this week when David was hospitalized on Monday for colitis. Apparently, the one meal we have eaten out since we have been home contained some bad sushi…that only David ate (Praise God). So, for 4 days we had a very sick daddy. I’m so thankful for friends and family that pitched in to help this crazy mama. The big kids had VBS and a sleepover with my parents while Maddox and I did a lot of camping out at the hospital. It wasn’t ideal but we made it work and thankfully he was discharged on Thursday afternoon.

Other than that, we have been doing really well. In honor of being home two weeks I wanted to share a few things about our new little guy!

~ He LOVES bath time….like water splashing everywhere, crying when it’s time to get out kind of love!

~ He eats everything. The only food he hasn’t gobbled right up is grapes and diced pears. He holds food in his cheeks like a squirrel…control issues much? ; )

~ He is sleeping like a champ. Normally he will go down around 8 pm and wake up around 7 am. Actually getting him to get to sleep can sometimes be a challenge but hey it’s only been two weeks, right?

~When we say “bye bye” he waves.

~ We play this game where we point to his nose and say “Jeong-hwan’s nose” and then point to my nose and say “umma’s nose”. Finally this week he will play back and point to his own nose when we say it. So fun to watch him soak up language and learn things.

~ Maddox and Dawson are the cutest little pair and watching them grow into brothers has been joy to my heart. Today I walked into the hall just in time to watch Maddox reach out to Dawson and give him an unsolicited hug. I may have shed a tear.

Life is good and we praise God for His goodness!

On Friday we spent the afternoon at my parents house to celebrate my dad’s birthday. It was Maddox’s first time out there and he had a blast hanging out by the pool. While we were in Korea my dad had been working on some swimming skills with the big kids and they were very eager to show off their new moves. We had a fun afternoon! Here are a few pictures:

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One Week Home

This very moment one week ago we were walking off an airplane into our hometown with our sweet blessing. We were exhausted and hungry but seeing the flashes going off through the airport windows gave us one last burst of energy. We were greeted with cheers  by our closest friends, family, and neighbors and 1 minute later I wrapped my arms around my two big kids and squeezed them so hard I took their breath away. At that moment we became a family of 5. As I sit her one week later I couldn’t be filled with more joy. The boys are splashing in a bubble bath and my sweet girl is curled up beside me. Life is so good!

At some point late in the week things started to fall into place. Maddox was sleeping through the night. David and I felt like we were alive again. We were seeing so many more laughs and giggles than tears. The big kids fell into a comfortable spot in their roles and everyone was getting along. I know it’s a honeymoon phase and if I had a sponge I would soak it up and bottle it because it is PRICELESS!

Last night Maddox slept in his bed from 8pm to 8:30 am and when I opened his door this morning he gave me the biggest smile. He was finally expecting to see me instead of someone else. It was a big moment.

Every day we see more and more of his sweet personality. Here are a few pictures from our evening in the backyard:

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How long DO you plan to stay cooped up at home?

I’d say this is the number one question we are asked right after “How is he doing?”.  And it’s a great question that I wondered myself of other adoptive families when we first began this process. That being said when asked I never respond in a way that really gives the reasoning behind why we are keeping to ourselves for a bit. So, in the hopes that I can do a better job explaining to everyone I decided to write it all down. Oh, and if you’ve asked this question please don’t think I’m singling you out..we get asked this multiple times day and it’s a very valid question. I hope you hang in to the end and that it helps you understand why we have chosen this path.

We know that each of you reading this has likely, in  some way, supported, loved and prayed for us. Because we know your care  for Maddox and our family, we want to share with you some information that  we hope will best equip everyone around him to assist us in laying the  strongest and healthiest foundation – emotionally, physically and  spiritually.
In many ways, Maddox is like the children who entered  our family through birth; we will parent like other Christian families  as we bring all of them up in the instruction and discipline of the  Lord. But there will be a few, initial differences. For over a year now, we  have researched bonding and attachment in newly adopted children.
We are confident of this: God’s design is PERFECT! His  plan for parents and children is a beautiful and meaningful picture of  His love for us. Attachment between a parent and child occurs over time  when a baby has a physical or emotional need and communicates that need.  The primary caretaker  meets the need and soothes the  child. This repeats between a parent and child over and over to create  trust within the child for that parent; the baby is hungry, cries in  distress, mom nurses & calms the baby – which teaches him that this  person is safe and can be trusted. By God’s very design, an emotional  foundation is laid in the tiniest of babies, which will affect their  learning, conscience, growth and future relationships. The security  provided by parents will, ultimately, give children a trust for and  empathy towards others.
Children who come home through adoption have experienced  interruptions in this typical attachment process. The loss of a  biological mother at an early age can be a major trauma on their little  hearts.Not only has Maddox lost his first/birth mother he has also lost not one but two sets of foster parents. The last of which cared for him for over 15 months of his 22 month life. The good news is that we can now, as Maddox’s parents and forever  family, rebuild attachment and help him heal from these emotional  wounds. He is overwhelmed. Everything around  him is new and he will need to learn not just about his new  environment, but also about love and family.  The best way for us  to form a parent/child bond is to be the ones to hold, snuggle,  instruct, soothe and feed him. As this repeats between us, he will be  able to learn that parents are safe to trust and to love deeply. We are,  essentially, recreating the newborn/parent connection. Once Maddox starts  to establish this important bond, he will then be able to branch out to  other, healthy relationships.
Maddox has, what may seem like, a lot of structure,  boundaries and close proximity to us. Please know that these decisions  are prayerfully and thoughtfully made choices based on immense amounts  of research and instruction from trusted adoption mentors. We are  doing what we believe is best to help him heal from those interruptions  in attachment as effectively as possible. Why are we telling you all of  this? Because you will actually play an awesome and vital role in  helping our Maddox settle in, heal, and lay a foundation for the future.  There are a few areas in which you can help us:
~ The first is to set physical boundaries. It will help us  immensely if adults limit what is typically considered normal, physical  contact with Maddox. This will (for a while) include things like holding,  excessive hugging and kissing.  Waving, blowing kisses or  high fives are perfectly appropriate and welcomed! Maddox should know that  the people with whom he interacts are our trusted friends.
~ Another area is redirecting Maddox’s desire to have his  physical and emotional needs met by anyone (including strangers) to  having us meet them. A child  struggling to learn to attach may exhibit indiscriminate affection with  people outside of their family unit. It may appear harmless and as if  they are “very friendly” but this is actually quite dangerous for the  child. To share this is difficult for us because we have snuggled, cared  for, fed and loved so many of your children. Please understand that we  want nothing more than to have Maddox hugged, cuddled and cherished by ALL  of you (he’s totally irresistible and huggable). But until he has a firm  understanding of family and primary attachments, we would be so  grateful if you direct him to us if you see that he is seeking out food,  affection or comfort.

Tonight as I tucked Reagan into bed she looked at me and asked why Maddox cries so much at night. She said it hurt her ears and she wished he would stop. I told her to close her eyes and imagine that one day she woke up like any other day. That I dressed her and got her all ready and put her in a car and took her to her doctor’s office. Then these strange people came in. They immediately started holding her and trying to hug and kiss her. They didn’t look like her family. They didn’t smell like her family and she couldn’t understand a word they were saying. Then I hugged her and while I was crying I let the strange people put her in a car and drive away. The family kept trying to show her affection. They took her back to a strange room where they showed her all kind of new toys. They tried to feed her food she had not seen before like seaweed but all she really wanted was mac and cheese.    I asked her to imagine trying to tell them she was sad and wanted to go back to her mother but they couldn’t understand her. Then they packed a bag and took her onto an airplane for a very long time. They got off the plane and drove to a house and introduced her to two little kids who again didn’t look anything like her. They were bigger than her and she couldn’t understand what they were saying either. Days went by and no matter how hard she tried she couldn’t get the people to stop kissing her or to understand that she wanted to go back to get her mother. I asked her how that made her feel. And with tears streaming down her face she said she was so sad for Maddox.

Maybe I didn’t handle this the right way and I, of course, assured her this would never happen to her and we will always be her mommy and daddy but I do think it was important for her to see why Maddox responds to things the way he does. And I think maybe this explanation will give a better understanding to those of you who are sincerely curious why we are choosing to do things the way we are. We certainly don’t have all the answers but we are doing the best we know how for him.  He is processing…a lot. More than we can imagine and as we walk this road of grief with him we want him to know that we love him and that we are here forever. It will take time. How long? I honestly do not know the answer. But slowly he will learn to trust us and eventually love us in return.

We are incredibly blessed to have so many loved ones  around us. We couldn’t ask for a better extended family & circle of  friends for our precious Maddox. Thank you so much for your love and support  over the past year. If you have any questions please feel free to  ask at any time! I promise we will do the best we can to answer you. No question is a dumb one!

Soaking it up!

I feel terrible that I have not updated our blog in a day or so…Ok, not really terrible! I have much more important things to be doing…like playing with my son.

That being the case I will just add a few tidbits from yesterday and today and a photo or two! ; )

Jeong-hwan is doing well. We’ve been through a lot in just the last 48 hours. HUGE strides! As I’ve said, he adores his daddy and tolerates me but we are really coming along. He has not been feeling well. Tummy issues and hasn’t wanted to drink much. We purchased 4 types of cups here and Holt gave us a cup but he would not drink out of any of them. He just takes his hand and pushes it away. Finally tonight he took a bottle from ME. Yes, he is almost two and still on a bottle. That is very common here in Korea and we are not going take anything else away from him right now. He has already lost so much.

Yesterday we only got out in the afternoon to run to the grocery store and over to the Holt office to take some donations and care packages for other adopting families. I’m pretty sure Maddox thought we were taking him back to his umma and didn’t take  kindly to being at the office. He slept well again last night. He went down about 9 and woke up once at 5 for a drink of water and back down until 8.

Today we stayed around the apartment since his tummy wasn’t feeling well. This afternoon he was full of smiles and laughter. It was a fun glimpse into his little personality. We are SO crazy about this little guy and can’t wait to be home and settled as a family of 5!

He isn’t saying many Korean words and we have not heard any of those. Mostly he whimpers and grabs our hands when he wants something. Usually that something is to go outside. He understands when we speak to him in Korean..well most of the time. The other times I’m 99% sure we are saying it wrong. When he gets upset I rock him and sing this song I made up with the Korean words for don’t cry and It’s ok. As terrible as I sing he usually calms right down and lays his head on my shoulder.

Well, I’m off to bed. We have a fun playdate at the zoo tomorrow with two other families. I’ll leave you with a few photos.

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Korea Day 3 ~ Morning {Onnuri English Ministry}

This morning we had the absolute pleasure of attending a church service at Onnuri English Ministry here in Seoul. Those of you from the Korean adoption world are likely familiar with Pastor Eddie Byun from his work on the “Voice of Love” campaign. We really were not sure what to expect but ventured out anyway and I’m so glad we did. We arrived about 30 minutes early and the moment we walked in the building we were greeted with friendly faces. . We sat down and watched the worship ministry warm up and were blessed by their music. Then Eddie (Pastor Byun) , as he introduced himself, came over to chat with us and welcome us to the church. He asked how we found out about the church and we told him the “Voice of Love” campaign and were able to share some of our adoption story with him. He was genuinely excited for us.

Right before the service was about to start we glanced back and saw a familiar face! My friend, Wendi, and her family came in with another traveling family and sat behind us. Wendi was the one who mentioned going to Onnuri and I was so glad she did because it worked out perfectly!

After the announcements, Pastor Byun asked us to stand up… (Gasp) and then proceeded to ask the entire congregation to lay hands on us (along with the other two families) and they all prayed out loud for our families and our new children…some in English and some in Korean. It was such an incredible moment! Then Pastor Byun prayed aloud for us as well and it was all I could do to keep the tears from pooling on the ground.

The sermon he gave was a the 3rd in a series on Marriage he is giving and it was incredible as well. Afterwards we were able to chat with him a bit more about the Voice of Love Campaign. He truly believes that positive change is on the horizon and we are so hopeful for that as well. He asked that we continue to pray and of course we will. So many of these sweet babies need a forever family!

Afterwards, we joined Wendi (and family) and Leigh (and family) for lunch at McDonald’s in the CoEX mall. The food was ok but the conversation was wonderful. I really love getting the opportunity to meet up with other traveling families and hear their stories.

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Wendi (on left) and Leigh (on right) after lunch

By the time we got back to the room ( an hour ride on the subway) it was around 3pm. We relaxed in the room awhile and then headed down to the lobby to meet two adoptive families for dinner. Both are staying here in our hotel. I did not know the Sneller family very well before but they are hearing to bring home their two year old son and also have a 2 year old daughter. Both are just the most precious kids! We so enjoyed meeting their family and their friend, Ellie, that traveled with them. And also, The Brokaws!! Heather and I have been friends throughout our whole process and I have to say I was so very excited to meet her here in Seoul!! She will be meeting her sweet Jax on Wednesday and I’m just thrilled for her. We ended up going to a yummy Italian place right around the corner called BonAppetite. It was a fun night! Here is a picture of the group of us when we got back to the hotel.

We Made It

After a very, and I do mean VERY long flight we touched down in Seoul around 5:30pm here. We are officially exhausted but so happy to be in Korea!
The airport was easy to navigate. Customs was a breeze. All our baggage arrived (huge praise!), and we were able to exchange our money right in the airport.
We walked out and immediately spotted the sign with our names. There were two other Holt families on our flight staying at another hotel that were being picked up also. Fun to meet other traveling families!

It was was about a 30 minute ride from the airport to DMCville where we are staying. Korea is beautiful. I can’t wait to really get out and see the sights!

The flight was great and because I’m always curious about the little details I’m going to share a bit more about it.

Korean Air was phenomenal. I mean seriously people they are a very service oriented organization. The flight attendants are stunning and oh so sweet. There were several babies on the plane and they went our of their way to make them happy. That eases my mind a little about our flight home.

We had our own personal little TV’s with a selection of movies, games, and television shows. There was a charger to plug in portable electronics between the seats and even a USB port beside each TV where I was able to plug in my phone. Maybe all international flights have these things..I have no clue but It’s good information to know if you’ll be flying Korea Air.

We ate two meals and several snacks throughout the flight. We had our travel agent tell the airline I had an allergy to mushrooms so I didn’t get a choice each time but that was fine by me.

This was my first meal. Grilled Chicken with Rice, carrots and broccoli, pineapple and grapes, and a roll.

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And David chose Bi Bim Bop which is a traditional Korean dish. This was altered up some but it came with Rice, Beef, mushrooms, cucumber, onions, bean sprouts..and some other stuff. 😉 Then you add Sesame oil and some spicy paste that I’m sure has a name. They even gave him a little chart to show him how to put it together. 😉

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For my 2nd meal I had a baked fish with lemon rice, salad, roll and fruit.

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And David had some type of Shrimp Pasta with these itty bitty baby shrimp. Not what he is use to seeing down on the Gulf coast for sure! And he got carrot cake! Yum! 😉

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I’m sure that’s more than most of you care to know but when you have a food allergy you always worry about these types of things so I thought it might help someone else know what to expect. We were also given roasted nuts, a banana, brownies, hot rolls.. It was a long flight so lots of food!

The biggest thing is we made it! We are figuring out things in our room and waiting for the kids to wake up so we can Skype with them and then we are off to bed. Our city tour is at 9:30 am! 🙂

And we are off!!

Sitting on our Korean air flight and I’m suddenly extremely emotional. I can’t believe this is finally happening. We should be leaving in the next 10 minutes and will arrive in Korea on 4:30 pm Thursday afternoon. If I calculated that correctly it should be 3:30am Eastern time in the US.

Next update from the land of the morning calm!! 🙂

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So much to say…so little time!

I had great intentions of writing about our trip preparation, Reagan’s graduation, our last “family of 4” getaway….yeah, that never happened.

And here we are sitting at the gate waiting to board our 1st of 3 flights. The last of which lands us in South Korea, the country where my baby is. Man, that takes my breath away.

We have a LONG day ahead of us and are so anxious but ready! I wish I could put into words how the timing of this whole journey has been so orchestrated by God (as everything is but it’s cool when you can see it in EVERY little detail).

Please pray for us today as we travel. If you don’t know…I’m an anxious flyer. David and I rarely fly together and bless his heart he is in for a treat. 🙂

I’ll update when I can!!

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