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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Dreams

 

      I’m warning you upfront this will be a rambling post. I’m going to have trouble accurately conveying what I want to say…and some people are going to read this and think I’m a whack job. I’m ok with that.

 I’ve posted here before about a friend of mine having a dream about Maddox coming home. If you know me well, then you know I have a tendency to, well…read way too much into dreams and signs sometimes. Don’t get me wrong I fully believe the Lord uses things such as these to convey messages to us..sometimes. However, I’m so eager to hear from Him I often see things that are either not there or are there but didn’t come from God at all..because I’m looking too hard.  There was this one time that ,I kid you not, I was convinced the Lord was telling us to adopt from India because our waitress at Olive G*rden was from India. I mean…there was more to it than that but I still laugh at myself when I think about it! So, how do you tell the difference between the two?

 Well for me, I can always tell because when it’s from God he confirms it. Never fails. And when it’s not He shuts the door. Just to give an example I’ll go back to the Olive G*rden the waitress. The week following that meal we came across the face of the sweetest little Indian boy I’d ever seen. It was his birthday. David agreed we should request his file. So we did. 24 hours later we got an email back saying that they would note our interest in his file but because I was not 30 we could not be considered. Well, there you go. Door closed. I had peace about it and I still pray for him. Maybe that was what God wanted all the time, for someone to be praying for him until his forever family could find him. I’ll never know. I could go on and on about this but I’m no expert and I really only have my life experiance to go on but it’s a fun topic I’d love to talk about more at some point.

   Anyway, back to the dreams. Since the first time I was told about Maddox coming home in someone’s dream it has happened 4 more times with 3 different people. SO, in total 4 friends have shared with me pretty detailed dreams about his arrival. I’m always taken back because the stories come when I least expect them but they’ve ALWAYS come on hard days. One friend said she saw me with all 3 kids playing in the park. I was pushing Maddox in a swing. One said she was at the airport when we arrived home to welcome us.One said she dreamed it was fall and Maddox was coming home. One said she ran into us at Walmart : ) and she dreamed a second time (a few weeks later) that she was with us in Seoul! Now, I could (and did) read WAY too much into each of them and bless each of my sweet friends hearts because I interrogated them about what season it was, what type of clothing they were wearing (sweaters, shorts…) and anything else that could possibly give me insight into whether this meant my son would come home THIS year! : )

 Do I believe that God was sending me a sign through my friends that Maddox is coming home this year? No. But, I do believe He sent a tangible way for them to encourage me just when I needed it. And as if that wasn’t enough I believe He wanted to remind me that He has got this and I need to not waver in my faith. He wanted me to know that Maddox IS coming home. It may not be this year, or by Christmas, or on my schedule but he will at some perfectly ordained time join our family in the flesh…forever.

   After the first time, I wanted to know why God wouldn’t allow me to dream it. I want to see him in action. I’ve only seen still pictures. Why other people? I prayed he would allow me to dream about him. It never happened. I believe I know why. If any of you have ever read the book “Choosing to See” by Mary Beth Chapman you may remember reading the forward by Beth Moore. There she tells the story of having a very vivid dream of Mary Beth’s daughter, Maria, who had passed away months prior. You can read that whole story here  but please grab a tissue beforehand. You’ve been warned. Now, I certainly don’t mean to say that my aches and longing for my son come anywhere near the pain of losing a child. I could not imagine that they do and don’t want to even compare the two situations other than to say that I think God knew. He knew I couldn’t handle a dream like that. He knew it would cause me too much pain to awaken and not have my youngest son still with me. He knew me well enough to send these blessing through my friends who would bring them to me with excitement so that instead of sadness I could soak up every detail through our fellowship. Instead of pain from awaking to empty arms He brought me joy through the dreams of others. Sigh. God is good ALL the time. Isn’t He?

 New things are happening in our adoption process. We aren’t sure at this point how a new policy will be implemented. It may be not so encouraging news for our time line. It may not. We hope to know soon. My heart sometimes feels like it can’t take this uncertainty one more second. But it does, and it will and end the end God is going to write an amazing story. I’m so excited to watch it unfold.

*If you are wondering what happened to our T-shirt fundraiser. It’s coming. I promise. WordPress hosted blogs don’t like for you to sell things so we are working out some kinks and in the process a new blog has been started…and now professionals will need to be called in because Tracey is OFFICIALLY in over her head! Hope to have things worked out soon.*