Thursday, January 31, 2013

Life has a Plan

Porter at 6 Months
Lydia at 10 months

Henry at 1 yr some months
Elizabeth at 3 yrs
Just another quick update and some random thoughts.
Henry has been doing really well these past few weeks with his blood draws. Veins are working phenomenally! And he seems to get tougher each time!  He has his favorite nurses that help him oh so much!  Thanks awesome Nurses at the PedOnc in Anchorage, we sure LOVE YOU! 
We will be doing monthly meetings with the Dr., and we will see how things are progressing.
He seems to be doing just fine with all the blood draws, today he even tried to give more on his own!(Just a small bloody nose) haha
I forget many times how much E has been affected by H's life.  But I do know that every time E came back to Seattle to stay with us, H perked right up and did so much better.  I remember when she came back from one of her trips to Annie's house, her first order of business was to crawl into the hospital bed with H and cuddle.  She was about the only one that could really get him laughing. 
L is loving the Dr. office, so many toys to play with.  I think every week she makes something at the "kitchen" to feed the nearest victim. Her non existent fear of strangers helps her cozy up to anyone and everyone when Mom is busy with H.  And for the hour we are there she usually gets her way, because she is one SASSY little thing.  That red hair...
P is growing faster than we can keep up, but at least he has chunked up a bit, he was sooo skinny.  Now he makes my arm go dead lugging him around.  Like two of his older siblings, he has had to switch to Soy formula.  But it seems to help his tummy quite a bit.
I have been asked to give a talk in church in Feb. My topic, the Plan of Salvation. A simple plan set in place by our loving Father in Heaven, an answer to life's questions; Who am I? Why am I here? and Where am I going? As a member of the Church of Jesus Christ of Latter Day Saints I have been taught the answers to these questions since the age of 1. I have taken for granted most of my life that I have the answers to these questions.  There is such JOY in life because I know WHO I am, and I know my purpose in this life. 
Today while attending E's 100th day of school party, we were ready a book and the word "spirits" was read. A little boy raised his hand and asked, "What is a spirit?" The teacher said it was like ghosts. E raised her hand and told the teacher that when we die we are just spirits.  While her understanding is just beginning, I was so grateful that she had some knowledge of what our spirit is.  It was an example to me that many people don't know the answers to those questions.
"Our hope and happiness lie in knowing who we are where we came from, and where we can go. We are eternal beings, spirit children of an eternal God. Our lives can be compared to a three-act play: Premortal life (our life in Heaven before we were born), mortal life (our life here on earth), and post mortal life (our lives after we die, they do continue). God has had a plan for our lives since the beginning of the first act."
How very grateful I am for awesome parents who taught me the plan of salvation, for my understanding of the plan of salvation and for the opportunity to teach my own children. What JOY I have because I know families are eternal and I know that we will all be together again after this life. We each have a purpose and right now, mine is being a mother to those four wonderful kids, and I love it!
"Rather than dwelling on the negative, if we will take a step back and consider the blessings in our lives, including the seemingly small, sometimes overlooked blessings, we can find greater happiness." President Monson

Wednesday, January 16, 2013

Confessions of THIS Mom

I am always ok with posting on my blog about our successes, our awesome family time, our accomplishments, and the good in life.  I think I've posted a few times about my failures, but I thought I would share something I learned from a lecture I gave my daughter.
We were having another "discussion" about how she NEVER listens (My exaggeration), and I said to her, "If you don't listen, you will never learn."  Which is true! (In this case she wasn't stacking the books exactly how I told her, hahaha I know...after 8pm I quit even trying to be patient) Another of my many weaknesses.  However, I thought to myself, HA Lisa, you're RIGHT! You don't listen either, that's probably why  you haven't learned to conquer your anger! (Yes I am still yelling, thus all the exclamation marks.)
As a Mother I stress about many things, most of them unimportant or out of my control.  I worry about my children's behavior, how they act to their friends, to other adults, at church, at school... basically I constantly worry about them, EVERYTHING about them.  Natural? Yes.  The only problem with this, I realized today, is that I have quit examining myself (well sort of), my behavior, how I interact with people around me, at church, at school, at home, etc. My disclaimer is that I realize many times that their behavior exactly reflects me and my behavior. But instead of trying to change myself, I just get frustrated with them and fuss over changing their behavior. I see my flaws and I point them out in my children.  But I haven't been constructive with my self criticism, only destructive. Listen and Learn.  
Here's another funny one, as an athlete I realized that I performed and learned better when I was encouraged, not criticized. My daughter is the same way, however, my mothering skills have tended to follow the later.  Why?  Maybe encouragement is actually a skill, or a talent, or maybe it just requires practice, or patience, ugh, in which case it may be hopeless for me!!
What I have learned tonight is this, my children are awesome, they are still perfect to the Lord and it is ME that has to change.  I have to walk in the Saviors foot steps so that they will know where to walk.  I cannot expect perfection from them when I myself am so completely imperfect.
My goal for tomorrow, because that's as much as I can handle, is to encourage the good.
I always knew I wanted to be a Mom, I wish I would have stopped for a minute to realize what exactly that really meant and how I could have prepared myself..even just a little! 
Encourage the Good!

Wednesday, January 9, 2013

Week 1

Gramps if it starts to get too bad, I'm calling you!

So we began treatment plan number 2 yesterday.
Weekly blood draws
100mls of blood every week
Our purpose: Trying to lower Henry's iron levels
After transplant in August 2009 Henry had to have almost daily blood transfusions because his bone marrow couldn't produce enough.  It took him body a while to reboot, but it did and that's all that mattered.  Now we are dealing with the after math... lots of transfusions leads to LOTS of iron and his body just couldn't get rid of it fast enough.  When your body has too much iron the body starts to "store" it in your liver and heart and spleen and other organs.  I totally understand, when I have excess "stuff'" on my counters I just start storing them in drawers.. makes sense.  :)
Well anyways, Henry's only has iron in his liver at this point, which is better than having it in your heart. (Part of your liver can die and you can still lead a normal life... part of your heart dieing.. doesn't do much good.)  
So our plan is to suck him dry and hope that his body can then start to get rid of all that excess iron.
This plan has the potential for fewer side effects than the pill, Exjade, that helps the body break down iron.  Too many possible side effects that can be very harmful. (Like Kidney organ problem at a time please!)
Yesterday went really well, put in an IV, drew blood every 15 minutes, checked blood pressure and made sure he didn't get too sick or dizzy.  If he can tolerate it, they will draw it out faster, but for now we are going slow. 
Even doing blood draws every month Henry's poor vein looks like a drug addicts arm, big purple bruised veins.  We aren't sure his arms will tolerate the weekly thing, so after the first month or so we'll know if he needs a permanent line in place.  (Not really looking forward to that, but I guess if it's easier on Henry's veins... we can manage, we've done it before)
I don't know how long it will take, I don't know if it will work the way we want it to, and I don't know how Henry will tolerate it, but I have HOPE. We trust in the Lord and count our blessings every day that H is still with us, and mostly HEALTHY. 
Didn't take pictures, forgot.... L and P were keeping me busy. Next week I will be sure to document.  But for this week we are reminiscing days past.