A Diagnosis....

 Dear Reader,

         When our second daughter was born, we knew something was wrong. We searched and searched for a doctor to take us seriously, to really examine all her symptoms (from multiple systems) and someone who wanted to help. She was hurting and we didn't have any course of action that really relieved any of it. It has been a long 6 years. In this journey we have seen 29 doctors from a variety of fields, have tried every type of cream/lotion out there, and have tried multiple diets. It has been a long 6 years.

     In the past 3 months one of our doctors suggested we get some further blood work done, just to see. We went to our pediatrician and asked for the testing. He consulted with a geneticist and she wanted to see A. Long story short, we went and saw her (she was fabulous!), and she suggested we do go ahead with blood work but also see one more dermatologist to answer some questions she had (and to get a skin biopsy that we have been asking for for 3+ years). We were hesitant, but we went to the Dermatologist. He was great as well! He really looked A. over, listened to all we have tried and understood we were not coming to him for another steroid cream. He sat back, thought for a moment and went on to explain that he was fairly certain he knew what A. had. He agreed we needed to do a skin biopsy (that would confirm his suspected diagnosis), and did one right there in the office. The results came back in 2 weeks and he was correct. We had a diagnosis. 

  

            She has a genetic skin disease called Icthyosis Vulgaris. It is not curable, nor will she outgrow it.

     But, we have a name. In a matter of a 30 minute office visit, and one test later we have an answer that 28 other doctors couldn't (and wouldn't look for in some cases) find. We praise God for His mercy in allowing us to have a clear answer, yet pray that He graces us with the strength, and grace to carry on in this next segment of our journey. 

    We go back to the Dermatologist in 10 days  for the followup where we can ask all the questions we have, but we wanted to share with you where we were at. We are also waiting for more blood work to come back. We will be sending a letter to every doctor we saw with this diagnosis and A.'s picture. We hope that thru this letter, they (the doctors) will take more time with their patients (and their parents) and listen to what the parents' concerns are. Parents are the experts of their children.

   

 We would appreciate your prayers for A. and us as we navigate this new journey. We don't have a clear picture of what all it will entail. Although, please know that I have done my research on this and have a list a mile long of questions for the doctor. In saying that, please refrain from sharing suggestions or rebukes on what we should do or should have done. This is where we are, and we are praying for the Lord for guidance. We do just want the best for our sweet A. 

   

What day is today and which way is up?

Really. What is today? Monday? Tuesday? I'm not really sure. All I know is I'm wiped out. I actually feel like I'm losing my mind.

I know what you're thinking. This lady is pretty boring these days. First, she disappears for a few weeks with some something about lack of  internet connection and then she comes back completely loony. *laugh* 

Well, I am loony (I'm sorry your just now figuring that out!Ha!). And, well, I don't even know which way is up at the moment. *sigh* 

I had planned on posting some fabulous 2012 picture summary for you all (ok, so there are only 5 people max following me- just smile and nod and let me think I'm talking to the masses!! *wink*). But, instead you get a slightly lucid, rambling post about not knowing what the day is........

To my benefit, let me explain a little further why I am a little loony these days (because have I actually shared about any of this at all?!). 

I have Hashimoto's (Hypothyroidism), that was just diagnosed this past fall.While I am on medication to manage my symptoms, I am not 100% yet. It is not 'managed' yet. I'm still on the roller coaster trying to figure out the perfect dose for me, and therefore all my symptoms are wacky with every change on dosage.

My new title is: Detective. Specifically a medical/food detective. Well, at least that is what I am researching constantly. Recipes. Gluten Free. Dairy Free. Corn Free. From scratch. Lymphatic system pathways. Functions of the Liver and it's signs and symptoms of malfunction. Heart murmurs. Weight loss. Hair loss. Poor weight gain. Failure to thrive. Mental fog.  

Doesn't that all sound fun research? *sigh* This is the road I'm on right now, again. Except this time the research and the doctors are for me. I am taking medication and I have seen some improvement, but my weight and hair loss is still an issue. A big one. So, I'm praying hard that this round of blood work is revealing and gives the doctor insight in how to get to the point of just check ups every 6 months. 

 See, when I started this blog *I* thought I would sharing with you all about the journey I have been on in motherhood, life and mostly my faith. But, as usual, He had other plans for me and this blog. *smile*

“For my thoughts are not your thoughts,

    neither are your ways my ways,”

declares the Lord.

⁹ 

“As the heavens are higher than the earth,

    so are my ways higher than your ways

    and my thoughts than your thoughts.

       Isaiah 55:8 & 9

Funny how plans are changed, detours taken and humility given. I am thankful that He has me on this road (again). I sure do wish it came with a little more physical energy. But, then again isn't what it is all about? Leaning on Him completely, giving Him the Glory because-

"But he said to me, "My grace is sufficient for you, 

for my power is made perfect in weakness."

 Therefore I will boast all the more gladly about my 

weaknesses, so that Christ's power may rest on me."

2 Corinthians 12:9

How are you doing this week? Do you know which way is up?