Saturday, May 24, 2014

Life marches on...

It is super easy for me to focus on morning allotment of drugs keeping me alive. I admit to having some dark times of the soul lately where I am so thankful for my connection with the Savior. He's got a plan, even if I am not totally sure what it is just yet. 

I love to focus on this :)  Sam enjoying the day with our friends.  I am sad when I hear him tell his little friend about his mom almost dying - he knows.  He sticks pretty close to me these days, they all do.  Baby Bird hugs me tight each morning and smothers me with kisses, Lala opens up to me more than ever, The Dr. has started to show us glimpses of his true manhood in stepping up.  Life is different for sure. In some ways sweeter, in some ways day at a time.  It is all a gift.

Soon I will be working on school planning in depth for next fall, for now I will enjoy quiet afternoons and the humble blessings of my dear husband. He is such a rock. He knows I am struggling and he is right there to help me.  I am a lucky girl.

Many are asking for updates, so here is what we know now...

I saw the cardiologist for the first time since being home on Friday.  As much as I am leery of all things medical, he continues to make me glad that God brought him to work with us.  He listened to all my questions, talked to me about each drug and what it does, how it works, etc. When I asked him about a diagnosis, he gave me some options.  He said there is an extremely rare adrenal tumor called Pheochromocytoma.  Most of my pre stroke/heart issue episode symptoms are a match for it.  It seems that most doctors just worry about controlling the hypertension aspect and not about getting rid of the tumor.  To his credit, he works with my heart and as long as my heart is happy then he is happy.  So our next step is to try and find an endocrinologist to test me for the tumor. Thankfully these tumors are benign in nature. There is a large possibility that this isn't the diagnosis and I am just a weird fluke, we shall see.  The Dr. and Lala have been enjoying old episodes of House and bringing their own theories to the table with each meal...makes for interesting - and gross conversation.

My doctor also told me to get to the neurologist. He saw my brain scan and had concerns that he knows only that doctor can handle, so she is next.  She was awesome in the hospital so I am looking forward to that appointment. I know we are looking at brain damage and some loss of function, I don't know yet how permanent it is.  I know the brain is amazing and can heal, but I also know that this is a new place for us and we just have to walk with it.  I am thankful I can type, even though the words often don't come together like they should... it's like my brain forgets where the H is or the E is... it is an adventure for sure.  My legs aren't right... sometimes they cooperate and sometimes they buckle.  I don't seem to have total brain control over's like I have to tell them where to go and what to do. Thinking about walking isn't fun and I DETEST stairs. I do love getting out though and we are out walking daily so they are getting stronger, even if I have to tell them where to go. There is something wacko about my vision. A few times a day, typing or reading isn't possible, I can see words floating but can't put them together. It tends to be after I have exerted myself, napping and surrendering helps.  The good news is I can still knit!  That seems to still flow easily.  Embroidery not so much, I have to really focus on where that needle is going. I did lose 12 pounds in the two weeks I have been home, so that is awesome, looking forward to more.

I still can't drive or be alone with little ones, but I am here and I am happy and God is good :)

Blessings to everyone.


  1. You have such a positive attitude. I am praying you feel God's peace as you find the best steps for you and your family.

  2. Dear Friend,
    You are in my prayers and thoughts every day. People who have never heard of you hear about you and how amazing you are from me all the time. The kids and Thierry talk about you like a favorite aunt. Stay strong, sending you blessings and strength.

  3. Melisa thank you for this update. I have been worried and wondering. As has my little. She knows of you because I mention WE studies and because we prayed for you together. For healing. My little is convinced the prayers did their work! I'm hoping they are *still* doing their work!

  4. God Bless You, Melisa, and your entire family. I just found your blog. Your faith is very inspirational to me! May you experience more Peace and Blessings each day.
    much love, Anne (Washington State)