Saturday, May 31, 2014

I love these people!

This has been an adventurous week... I drove, not by choice and it was a little frightening but we got home. Not planning to do that again.  You see Papa got stung by a stingray at our weekly beach outing. We decided he is for sure a new level of B.A. now.  It is extremely painful and there is no treatment for the venom so you just have to wait it out while your body metabolizes it.  The lifeguards were great and super helpful.  We love Ocean Beach :)

My spirits have been better this week, I think the medications are starting to stabilize. I do find it interested (and a bit frightening) that even missing one dose or taking it late gives me chest pains and sends my blood pressure up.  I am not sure that you could really call me stable, at least by my terms since I am not seeing any end to all these drugs.  But I am here and that is what is important.  We are making some insurance changes so it is likely I won't get in to see other specialists until July at the earliest.  I will update when I know more.  My legs are getting stronger, but they are still now cooperating so strength isn't the issue.  I am enjoying good walks daily, after a time my hips and knee joint on my left side decide they are done.  No changes in my other issues of vision and focus.  But again, I am here and that part makes me happy.  Please keep us in your prayers as we work out the financial part of this new territory.

This week we have fun times with friends planned and Sam's birthday to get busy on, school planning to get started on and some school things to finish up for the year...slow and steady.

The Dr. has been super busy working at Legoland.  He is loving his job and I am so excited for him.  It really is just what he needed.  It is weird him not being here most days.  Hopefully he will sit for the CA High School exam within a few months so he will be done DONE on his high school career!  Life is marching on!  So weird. So cool at the same time. Bittersweet for sure but I have to say, I couldn't be prouder of this guy. To think there was a time when I worried he would never leave home.  He is excited to get busy on his mission to serve the Lord.  Wonder where he will go?

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.

Monday, May 19, 2014

Keeping track

I feel prompted to keep up with my progress somewhere, this place is a good start. I need a place that isn't work related, that's just us. Raw.

On April 28, 2014, our lives changed.  I had what doctors are still calling an emergency,  I think you could pile stroke and mild heart attack on it. I arrived with blood pressure of 260/170.  I spent 9 days undergoing all kinds of tests. We know I have some brain damage and heart damage. We don't know how long it will take to heal. It may never totally heal. I can't drive.  I shouldn't be alone with the little ones. Handwork and reading aloud seem to be harder, my left leg seems to have a mind of it's own when it comes to walking - at least I didn't bring home a walker.

Our lives will be different now. New dreams need to be forged. I am lucky to be here. I love my husband.  I adore children.