Diagnosis

I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works: and that my soul knoweth right well.                   Psalms 139:14

I was fixing dinner on Wednesday evening and I turned around and saw this sweet girl! She grabbed Micah's hat and was being silly. There she was complete with her Mei Mei shirt and Micah's Ch*nese hat!

Let me begin this post by saying that none of what I am about to share came as a surprise to us. Jeremy and I pursued a child with special needs when we began our adoption process. We were matched with this precious girl based on the special needs we agreed to accept. 

I have been vague mentioning Mariah's medical special need as we needed a firm diagnosis. Her endocrinologist called us a week and a half ago. There was only a slight surprise as he shared with us the results of her blood work.

Mariah was born with a congenital adrenal insufficiency. Like me, many of you probably do not know or understand what that means. It is complicated and little information is available. We have read like crazy since December in an attempt to learn more about this baby meant for us. However, without knowing the details of her blood work we were merely guessing.

We were told Mariah likely should not have survived past her first fever. Mariah's adrenal glands do not function properly. In fact, her adrenals do not have the ability to produce the most important hormone the human body needs to support life itself. She cannot produce cortisol. It is truly amazing and only by God's grace that this baby has not gone into adrenal crisis without treatment. She has received absolutely no treatment since birth. Any stress on her body can put her into adrenal crisis. Stress could be something as simple as a fever, vomiting, diarrhea, or even her Gotcha Day and taking her away from everything she has ever known. A large stress is any surgery, a broken bone, or trauma. It is quite humbling to think that all these months God has protected this baby.

This blood work also showed us that she does not properly retain sodium or potassium, this is the severe form of the disease. She was prescribed oral hydrocortisone three times a day in an attempt to replicate the effortless design that God intended for our bodies to perform. As you can imagine this is a puzzle for her doctors to put together. She also was prescribed a medication (orally) to take once daily to help with her sodium/potassium insufficiency. Mariah will take hydrocortisone three times daily for the rest of her life. We have also been given instructions on stress dosing for Mariah for when she is ill.

If either of these levels drop, she can go into adrenal crisis. So Jeremy and I have to learn her cues and follow them. For some wonderful reason, her life has been preserved. Now Jeremy and I have to learn as much as we can so we will one day teach her how to manage this. She will be wearing a medical alert bracelet and I will be carrying in IM vile of Solu-Cortef (cortisone) with a needle to give an emergency injection in case she suddenly has an adrenal crisis. 

Unfortunately, there is so little known about this that most ambulances do not stock their buses with this hormone. So our responsibility is to train our other kids as well and be prepared to train emergency medical professionals, since so little is known. Hopefully we will be prepared for something that will never happen. I guess we will prepare for the worst and pray for the best.

As you can imagine, any stomach bug is life-threatening for her. If she vomits more than once or has more than one bout of diarrhea we have been instructed to take her the the emergency room for intravenous fluids. Since she is vulnerable to dehydration followed by adrenal crisis we cannot take this lightly. 

Since starting the medication to prevent dehydration, we have noticed a little difference. For the first time we have seen tears. It didn't occur to us that she just didn't have the reserves to produce her own tears. We are learning, daily!

As the doctors attempt to find the correct dose of hydrocortisone to mimic what naturally should be happening, we will be taking her for monthly blood work. We are praying that our hospitals here are capable of drawing blood on an infant. After the dose is verified, Mariah will have blood work every other month, probably for the rest of her life.

Mariah also needs reconstructive urological surgery. It will likely be multiple surgeries. This also was not a surprise to us. We are waiting to see those specialists to give us more of an idea what to expect. Unfortunately, she is a complicated case and it will take some time for surgeons to develop a plan to help make her healthy. 

You may wonder if we would have accepted this little one if we had known all of these details. ABSOLUTELY!!! We know that we are her parents. She was chosen for us. She was fearfully and wonderfully made just as our other four children.

We believe that in all of these years of parenting, God was preparing us for each of our children. Our Benjamin has been our introduction to a complicated medical case.That poor child regularly sees six specialists and another specialist as needed. Mariah deserves as much of a chance to learn about God's love, the love of a family, and to receive the medical care that she desperately needs. 

Jeremy and I are not upset over this at all. Like I said, we knew all of this but decided to share it once we had more information. You probably now understand why in an earlier post I mentioned that Mariah was considered a difficult placement. She was one of the least likely to be adopted on Ch*na's Special Needs list. Little did they know that Jeremy and I were waiting on this specific child.

She is a blessed baby to have four siblings that adore her. Here is a small sampling of what Baby Cakes (Jeremy's nickname for her as he nicknames all the kids) enjoys around our house. That is until I hear the older kids say, "Mariah, go see Mama!"

Snug as a bug in a rug!

They put her in my clothes baskets and scoot her all over the place!

In the picture below, Becca was trying to play Pat-A-Cake.

Kyle wanted to take her outside to play. She ran to him and sat down so excited to get her shoes on and go bye-bye.

Here are the kids just before church on Wednesday night. They all began their new AWANA year.....even Kyle. He loves to serve. So, again this year he will be helping Jeremy occasionally with Game Time. Tell me how our Ben is now in Truth And Training? Shouldn't he still be in Cubbies?

School began on Tuesday too. It was an honest attempt. Yet it was rough.

Mariah was not at all impressed that we were preoccupied. She was very busy and not really happy. I snapped this picture as she was chewing on a spoon at the small desk.

Friday evening was an impromptu dinner with my sister and her family. I needed to borrow some of her school books and we planned to meet up for supper at Wendy's in Logan, OH. The kids were playing in some grass and it started to rain. We all hurried to our cars. Evidently, Jeremy had time to snap this picture!

Tammy saved the day/evening! She had her smartphone and found a park that was just round the corner from Wendy's. Then the rain stopped so the kids could play.

 Kyle has such a great sense of humor. He even enjoys making fun of himself. 

 Aunt Tammy was happy to play with Mariah.

Here is Abbie just absolutely loving on Mariah.

Sweet Sarah loves Mariah. I wish the feelings were mutual. Evidently, Mariah had things to do an places to go.

We had to get a picture of all of these sweet kids together before we left to go back home. So here are Tammy and Don's three kids and our five! 

Saturday night wrapped up so well. Karen (LuXue's mom) and I arranged for Mariah and LuXue to Skype with each other. These girls spent their first 18 months in cribs that touched each other. Every time we ask Mariah about LuXue, she grabs her right ear at the top and pulls. Jeremy jokes that quite possibly Mariah and LuXue were the orphanage bullies and this was their gang sign. We will keep these girls in contact with each other. We are trying to arrange a face-to-face visit for them in the future.

Here is a picture of Mariah (more like all of us) Skyping LuXue!

 Everyone enjoyed the video chat!

We ask that you keep Mariah in prayer. It will be a very long road for her. We ask for prayer to give Jeremy and I wisdom as we treat her and make some difficult decisions. Also we ask that you join us in prayer to find her the very best doctors.