Another Miracle

I read the following story below and was reminded of how much our Lord is in control.  It is so easy to get wrapped up in the prognosis of our diseases, the gloomy percentages and what the doctors say the long term effects may be.  The truth is they are just man like you and I. People who easily make mistakes and don't know it all. They can only go on what they have seen.  They are not God who is soverign over all.  God's word says in Mark 10:27 "With man it is impossible, but not with God.  For all things are possible with God."

I am so in awe....

today was the start of a long week of hospital appointments for the kids.

A week that I thought would be grueling has me hardly able to take a breath and feeling like I am floating on air!

Some of you may remember that last year we walked through a nightmare....

thinking our son was going to lose his vision,

then finding out he had Albinism and low vision.

The things we were told:

* He had at best 20/50 vision (with glasses)

* It was anatomically impossible for it to ever improve (he was literally born without a fovea in either eye so his eyes would NEVER be able to focus better)

* He may never be able to drive

* He would need special dark pencils, classroom aid equipment etc. because he REALLY struggled with low contrast stuff

* He could not do any sports where a ball or object was coming at him

* It may not be safe for him to ride a bike much longer

We were SO excited that he would still have some vision and amazed at God's grace in that.

We started appointments with the Low Vision Clinic,

added a second pair of 'desk' glasses for up close work,

added a 'powerdome' to help him read,

added an Android tablet to help him make letters bigger....

all of these things were helping alot but we knew down the road he would probably need more help in the classroom.

So today we had our scheduled Low Vision Clinic meeting to run tests and see where we were at....

The doctor started testing....

and he kept saying, "are you seeing what I'm seeing?"

I kept nodding my head as I wiped away tears....

That anatomically impossible deal?

* He is now seeing 20/25 (with glasses)!!!

* He is seeing completely 'normal' in low contrast stuff....

* The doctor said, "I cannot even call him 'low vision' anymore....because he isn't!"

* His vision is completely in the NORMAL range in all categories!!!!!

* The doctor said that he has "no explanation" for the progress...

* We have been discharged from the Low Vision Clinic and never have to go there again!!!!!!!

I am stunned and the tears just keep coming....

For some reason God has chosen to return sight to my little guy...He has heard our cries.

I will never, EVER forget watching Parker leap down the Doernbecher hallways singing, "I'm a miracle!" to everyone who passed him by.

Praising God with all my heart!!!!!

Not Our Plan But His

Jason and I have tried to get away a few times in the last month to relax and something has come up each time to disrupt that.  We recently on a local trip had a good talk about our desire to want so badly to relax and how we feel like somehow even for a minute that will just make it all better.  The truth is it really wont.  It may be nice for the moment but it wont last.  God wants us to desire him and to need him and to go to him for the peace we desire.  A few hours after we had this really good talk I got a phone call from one of my dearest friends.  Her husband was being rushed to emergency because his white blood cell count was extremely high and his platelette count too low. Hours later we would find out that he has acute leukemia.   This couple is like family we spend holidays together and this news just rocked us.  We were on vacation close to home (Escondido) and it felt like we were another state away.  We wanted so badly to be with our dear friends.  God was telling me once again to desire him above all things, to go to him for peace, for strength, for  everything. We couldn't stay away any longer and headed back to be with our friends.  Seeing my dear friend crouched down outside her husbands hospital room was too much for me to bear.  He has always been her big rock who could handle anything.  The man who after  hard work and dedication graduated from nursing school to take care of others needs.  The head deacon of our church who would give the shirt off his back for others was in the room suffering from chest pain and high fevers.  It was difficult, not at all relaxing but there was no other place I would rather be.  This same couple held my hand as I almost lost my daughter and rejoiced with me when God healed her.  It felt so good to get off the mat and to help someone else in need. God showed himself so beautifully in the ways he worked through his people.  We could not get the Caring Bridge site up fast enough, people wanted to know where they could bring meals, cards, money, etc. people just wanted to do something.   It was a beautiful outpouring of love. It helped jason and I get a view into the way you have all felt wrapping around our family.  Geoff still has a long road ahead but the last few days have given us so much hope and encouragement for the days ahead.  He has been fever free for a few days and his numbers keep improving.  He will be transferred to UCLA soon and will eventually need a bone marrow transplant.  It's pretty amazing that we will end up at the same hospital awaiting transplants together.  We joke that we will meet in the hall for a quick hug and prayer.  Our friendship has deepened as we have a new level of understanding for one another.  We were just saying today how you feel like it just doesn't seem real.  You feel like you are watching a movie and things are gonna go back to normal.  We both acknowledge however that this is the place God has for us and this is the place he will do his biggest work.  They have certainly inspired me with their strength and faith through this hard last week.


Will you please lift up our dear friends the Dykstra Family in your prayers.  They have five young adorable children and we are praying for restored healing.  You can follow their journey at
http://www.caringbridge.org/visit/geoffdykstra/journal/6

As for Noah he will have a heart biopsy on June 17 to check the pressures in his heart and how much the disease has progressed.  We would covet your prayers.

Feeling Good

I want to thank you for all the encouraging words regarding my last post.  I hate those days when my joy has been sucked dry and I'm down and out.  So Thankful for how God quickly restores my soul and lifts me up out of the pit.  We have the most wonderful God who is so faithful in reminding us that he is here.  That he will never leave us or forsake us.  It was a really hard week where I felt just exhausted emotionally and physically.  The physical limitations get to me sometimes.  I have an amazing trainer who is so positive and he set up a game plan to help my strength.  I had stopped taking creatine(a muscle builder) for about three months I just missed a few and got out of the habit.  He urged me to restart and also encouraged me to start taking an anabolic steroid called Anavar.  He has been talking about Anavar for a year.  He said it has really helped Aids patients in regaining strength and athletes to recover faster.  I had been hesitant.  I don't like to put stuff in my body that Im not familiar with and I needed to check with my heart doctor.  The week I was down caused me to be at a place where I was willing to try anything that would help my situation.  I started on both these things last week.  I have already seen a remarkable difference especially in my pain.  I was able to do a full Costco trip without pain. Thats huge for me.  I also had a crazy idea to start riding a bike again.  The first attempt did not go over well but I was determined to keep trying.  Today I got back on the bike with my trainer and successfully rode on my own.  I'm over the moon happy and pray that I will continue to increase my strength.  I do not want to let this disease defeat me.  God is so present in those hard moments when we don't feel him near and I know he was whispering in my ear saying if only you can see what I have in store for you next week baby girl, You would wipe away those tears immediately.  He is ALWAYS working all things together for good.

Some days are hard

I have had the desire to post many times but have lacked the energy.  It seems that we are in a holding pattern these days.  We are waiting for "the call", waiting for a diagnosis with me (still), and waiting until Hannah's next surgery.  Waiting can be hard I for one have never been good at it.  I remember when I was young unwrapping my Christmas presents and then taping them back together.  Don't tell my kids :) This is certainly not as fun as that thats for sure :)  I'm usually more positive on this blog but I also like to be real.  The truth is I'm struggling with waiting.  My legs have gotten weaker and it has caused more frustration in me.  I can't walk very far without being in pain and my legs tiring out.  It reminds me how frail I'm getting and it is just plain frustrating.  It's hard enough trying to take care of three kids not to mention  two with special needs and homeschool and be a good wife.  My mind wants to do it and my body says no you can't.  This year my kids have seen me fall a dozen times, use a wheel chair and lay in bed with heat bags.  I know things could be worse and I know this is so the works of God can be displayed but it still SUCKS sometimes and I think it's okay to admit it as long as we don't stay in it.  I'm longing for the day when there is no more pain. God is always faithful to bring me out of this and I know he will bring back the joy. His mercies are new every morning.  For now would you please wrap our family in prayer.

I will be making an Apt. at UCLA for myself to find out what the next steps are in finding me a diagnosis.  We are also working on finding a good Neurologist closer that could help when needs arise. Pray that I would find joy in the difficult days.

Pray for Noah that God would protect his heart until he gets his new one.  That he would remain healthy and positive and lean on the Lord.

Jason as he cares for us all.

Hannah that she would remain stable and not have to have her next surgery until we get done with Noah's.

Jonah that he would not be scared for his family members and that he would cling to you in the midst of all that is going on.  That he would feel just as loved and important.

We are so thankful for all of your love and support .

Happy 10th Birthday!!

Noah we love you so much and now more than ever we don't take any day for granted that we get to be your mom and dad.  The Lord gave us a precious gift ten years ago.  We couldn't be more proud of the sweet young man that you have become.  We love your heart and your compassion for others.  We love how you have accepted your diagnosis and have seen the Lord at work through your circumstances. We Love that you love Jesus.  You are wise above your years.  Happy Birthday sweet boy.

A Beautiful Evening

Last night was the big dinner/silent auction event that our dear friends worked so hard on.  As we entered the room people were busy setting up and getting things ready.  They all had smiles on there faces and were so happy.  The place looked spectacular and Jason and I stood in awe.  The event started and we went around welcoming and greeting the many people that entered the room.  I felt humbled that so many that I was meeting for the first time came to support our family.  As the speakers spoke and the presentations went on I was so overcome by God's goodness and wondered if this was what Heaven would be like.  Such Happiness, no worries, no pain, just joy at seeing God's beauty displayed among his people.  It was just so touching.  He continues to show himself over and over again.  The night was about so much more than raising dollars.  It was an honor to have a small part in what God is doing among this difficulty.  Thanks for all your prayers leading up to this event. I was thankful for your specific prayers for Jonah and him not feeling left out.  He had a great time. He even got to go up on Stage and help out which made him feel so special(thanks Jeff).  God is growing his compassion and understanding.  Noah was taken back as well at the amount of people that were there to support our family.  He is learning everyday from all of you how to love and support others and we thank you for  being such beautiful examples to him.  You all are playing a big role in what God is doing through this sweet child of his.  Our prayer is that Noah will see God using him to bring about his glory.  Right now it is fairly smooth and we know the hard days are to come.  But God is preparing him daily and equipping him with the strength he will need to persevere.  We will take it as it comes knowing and trusting that God is sovereign over all.

There are hundreds of people to thank that made last night possible.  From the amazing team, the donors, ECCU, the speakers, musicians, the servers, the Chef,the audio, the photographers and videographers,ECCU member services, family, friends, and new friends we met for the first time.  Words just can't express how much we appreciate your love and support.  We feel truly blessed.

A Makeover

I decided after two years that my blog needed a little makeover :)  I hope you like it.  After talking to the nutritionist on Tuesday, we found out that the diet Noah will be on won't be as drastic as we had anticipated.  He will need to cut down on his sodium and sugar but nothing we wont be able to handle. He was pretty happy to hear that.  We have however been enjoying cooking and eating foods that are all natural and do not have any preservatives.  One of my favorite food blogs that I have found helpful is  www.100daysofrealfood.com  It is so great!  She has great recipes, advice, shopping lists, and menu plans. I would love any advice or favorite meal ideas.  Do you all have a favorite local farmers market that you love?  We have been making lots of smoothies.  We even cooked some organic beets and sliced them up.  If you add them to a berry smoothie the kids can't tell and the berries hide the taste. Shhh don't tell my kids :)  The problem with all this healthy cooking is that two of us in this family need to gain weight and this doesn't help unless we double our calorie intake and eat every hour.  I know I know not a bad problem to have :)

We have not gotten the results back yet from Noah's heart tests.  He continues to have more and more episodes.  Please pray that God would sustain him until he gets his new heart.  We are thankful for all of you and your faithfulness to pray and support our family.  Your comments have been such an encouragement to us.