update

Time seems to be playing funny games with my mind. A friend told me last night it was Friday night, and I didn't believe him! But I guess he was right. Sorry I haven't been fabulous about updating you all.

 

So, a of last blog post, we had come out of surgery and were in ICU...

 

Thursday was a long, sleepy day. For Nat he had been in the OR for 15+ hours and his little body was trying to process all of that anesthesia. For me I had been awake for 41 hours out of 48, so I just needed sleep! For that most part that is what we both did, sleep.

 

I was reminded on Thursday that I think morphine might not be the best drug for Nathaniel. Poor little guy couldn't stop itching!! So then he had to go on benedryl to fight the itching.

 

Also, on Thursday we saw just how many pressure sores Nathaniel has from laying in the OR for so long. The worst in the sense of annoying is on his chin. He keeps touching it since it bothers him and it keeps opening back up. But he also has them on his chest in a few places, on his thighs and on his wrist. So we have been watching those carefully.

 

By Thursday afternoon, Nathaniel was ready to start trying some clear foods. He Has some jello around 1:30 pm, then he talked someone into pudding a little later, but the problem came with the apple juice... the apple juice that caused EVERYTHING to come right back up... ALL over mommy. From head to toe, across the room, even got the curtains! This kid... he never does anything small! Thank goodness for family house, and warm showers because Nathaniel played this game on me for a few hours! He made QUITE the impression on the PICU nurses! So by midnight Thursday we had pulled him back off anything by mouth.

 

Through Thursday Nathaniel also struggled all day with pain. We were trying all the time to find something to help with the pain and not make him itch like crazy. Around midnight, Gramie took over bedside sitting and I head to the family house for a few hours sleep in a real bed.

 

Friday dawned with me more rested and ready to get this healing moving. Unfortunately not so much for Nathaniel. Because of the struggle with pain, his medications were changed once again, and he slept pretty much ALL day Friday. We could hardly wake him up until about 6 pm. That was a bit hard on me. Also, on Friday morning Nathaniel's temperature kept spiking high, his incision was leaking and his urine was off so he was started on some antibiotics.

 

By Friday around 3, Nathaniel was deemed ready to escape the PICU! Since he is on nurse controlled pain pump we had to go to surgical floor, so we are now located in what is called 3 Surg. It is a large open unit, somewhat like the PICU, and VERY LOUD. Kind of a bummer since non of us can rest well, but it is what he needs right now. Please pray for all of these screaming babies!

 

FINALLY around 6 Nathaniel woke up some and was able to talk to us. This was a HUGE relief to my as I was very worried about how out of it he had been all day. He woke up enough to talk to his sister and watch a little TV with her.

 

 

Also about this time Nathaniel decided he wanted to try food again. So I ordered him a dinner tray. He had the super nutritious dinner of chicken broth and orange sherbet. And THANKFULLY he kept it all down all night!!

 

The biggest source of frustration for us right now seems to be the MRI. On Thursday afternoon an MRI was ordered. They need to check and make sure that all the cysts were removed, and they also still need to image the brain to make sure that none of the cysts have made their way into his brain. On Thursday, when the test was ordered they somehow managed to not get it done, but we were promised to have it done on Friday. Every time I turned around they were rescheduling the test. At the end of the day it still wasn't complete and I wasn't too happy. Once again I have been promised that it will be done before noon today. And I am REALLY praying that this happens. Until the test is ran we are completely in a holding pattern, and that is just... not so productive!

 

It is now Saturday morning, and I am going to  TRY to keep up with my days! Nathaniel had a good night last night, rested well, and his fever seems to have gone down. We are ready to see what today brings. Hopefully it brings an MRI and clarification of whether or not he needs more surgery! We also just learned that tomorrow he can sit up if everything goes well today! I am sure he will like that!

 

Through this journey I have had a supernatural peace that has been beyond amazing. Last night I had a rough time. I waivered in my strength and allowed the enemy played mind games with me. I spent much of the night in prayer and feel more peace today, but would appreciate prayer for clarity, focus and strength in my convictions. I love all of you who are holding us up to His throne in this journey. God has truly blessed me with amazing friends.

 

The other area I would beg for prayer in is a little tougher. Nathaniel's father has said that he will be here tomorrow evening. I can not deny him the right to his son, after all biology makes him his father. But I am concerned about the implications and stress of having him here. He destroys my peace by walking into the room most days and I just don't have the energy to loose focus on the journey that we are on. Please cover Nathaniel and I in prayer over this situation.

 

Thank you all for walking this journey with us, we love you!

 

 

 

His Perfect Peace

Today has been one of the longest days of my life.

 

My little boy (in the total mommy sense of a little boy, you know, the "I gave birth to him so he will always be my baby" way?) had MAJOR surgery today. He was in the operating room for over 15 hours while they dissected and worked on his spine. He had a tethered spinal cord release and they removed multiple cysts in his spinal column. This was a very long, complex and involved procedure. Any normal human being would have been terrified.

 

We have been preparing for this procedure for a few weeks now. Not long, but not overnight either. I have spent countless hours in prayer over this procedure, and I have begged for prayer from every person I know near and far. I have asked strangers to pray. I have asked my dearest friends to pray. I have asked my church family to pray. I have asked our Spina Bifida family to pray. You name it, I have asked them to pray. Because, you see, that is how I handle hard. I take it to the throne of my God and leave it at His feet. The Bible teaches us this. It teaches us that we can give ANYTHING to God, and if we pray in His accordance He will answer us.

 

In some ways it is such a simple concept. But then we put our human weakness into the concept and it becomes very messy. I don't know why we do this, but we seem to. I know I do.

 

This has been a LONG day. I was up before 7 am to get myself ready. I had to have Nathaniel at the hospital to check in at 8:30 am. He was scheduled to go into the operating room at 10:00 am. If you have read the previous post, then you know that they didn't actually take him in until noon ... almost 2 hours late. It is now 3 am, and he is still not done yet.

 

15+ hours of my little man asleep, under the knife and totally out of my control. If you are a parent that has had to turn your child over to a surgeon before, then you KNOW how nerve wracking this is. Probably one of the hardest things I have ever had to do and I have had some HARD stuff in my life. And I have had to do this OFTEN. Too often! But today was the longest I have ever had to do this for, and it was also the most complex surgery we have had to endure since his fetal closure in April of 2000. Today was epic huge.

 

With today being epic huge, I have spent so long on my knees and in continuous prayer. And I KNOW that we have been covered in prayer from every angle around us. And that prayer? I made all the difference in the world.

 

I was at TOTAL PEACE all day.

 

Yes, I had moments of loneliness.
And I had moments of  concern about my ability to see him so invaded.

 

But the procedure?

The doctor?

All that Nathaniel was enduring?

 Total peace.

100% unwavering faith in the Lord.

Complete knowledge that God had this covered.

 

 And the feeling of that peace?

Completely indescribable.

Once you have tasted that peace, I don't know if there is anyway to go back to a place without peace.

It is THAT powerful,

THAT addicting,

and THAT GREAT.

But you know what?
This peace is not just for epic huge, it is for everyday living!

In the midst of all of what was going on today, I have multiple friends chatting with me throughout the day. Via text, email, Facebook and even IM... what would we do without technology?? It was so great to have people to talk to and share my heart with. One friend and I were talking about this peace and how it transcends ALL of life. I was tired, and the first time or two I read the his message I didn't get it, but I KNEW there was a nugget in there I was supposed to "get", so I kept re-reading it until the light went on. I dare you to chew on these words, to roll them around your mind and to REALLY let them sink in.

"You know another thing I prayed for, is that His Spirit would indwell you, and for some reason, the way I worded it, is that Jesus' spirit would dwell in you. (And I meant His nature would dwell in you. His peace, His faithfulness, His compassion, His earnest desire to please His Father). And when I said that, I grasped it; tasted the peace that it would bring you, I knew how GOOD it would be for you, you know? Then what is obvious struck me: That prayer is for me too, that is what is best for me too, for every one of us, at any time, not just the stressful times.  And then this vision of this flood of blessings that would come for other people, if I was just willing to be ... that willing soul that I had just wished for and prayed for, for you. 

I know it's such plain concept that we are all continually aware of, but sometimes you get reminded of what you already know. you know?"

Did that sink in?
It did for me, and it was a total "ah ha" moment for me too.

Now I dare you to LIVE IT.
Live with the Spirit of Jesus dwelling in you in ALL things.
Live the example, walk the walk, do the life.
And be completely consumed with the PEACE that comes from doing what he asked.
Don't worry about HOW to do things, just do as he asked.
Don't hold yourself to a higher standard than he does, just walk the path he gives you.
Don't diminish your own walk but comparing yourself to others, just follow where he is leading you.

 And above all things, know that He has got this!
If you are doing as He calls you to, He totally has you!

I think I have been doing a fair job of walking in His spirit on this journey, and I am TOTALLY amazed with where He is talking me and how He is taking me there with such complete peace. And if I can do it in this HARD stuff, I KNOW you can do it in your daily life!

I dare you.....
What is God showing you?
Where is God calling you?
What path has God given you to walk?
DO IT, and be transformed by His peace, His grace and His perfect will!
And then you will know this feeling I have right now.

 

 

Running Update from Surgery

3:20 am.... They just wheeled him past me!!! I got a quick glimps of him!!!! Oh how I want to touch that boy! Thank you Lord he is OUT of the operating room!!!!

2:15 am update... oh my heck... the doctor just said we have another hour to go... It has been quiet the journey... I am ready to see my little boy again! Praying this hour goes fast... But the Dr. Sun thinks he got it all in this one long day.. we will have to MRI to be sure, but for right now we are going to call it done! The Dr also says that all of the nerves are functioning at the same level as when he went in, so he shouldn't have lost any function! PTL... just a little bit longer till I can see my boy!

11:45 pm ... They JUST called to say that they are starting to close him right now!!! Praise the Lord... Praying they got it all... will find out more in about an hour!

11:00 update.. Still going strong in the OR!!!! Everything is still going great, and Nat is very stable. I am praying since they are going so diligently that maybe they can get it all done in one round? What do you think God? Thank you all for covering us in prayer, chatting with me, texting me and encouraging me. I have absolute peace still right now, even 10 hours in. That peace comes from God and from all of you covering us in prayer... how do I thank you for that?

10:00 pm... a papa I only know from online SB support rooms brought me coffee and Starbucks! The SB community is SO supportive and awesome!

9:15 pm update... Nat is totally stable... Dr. Sun is still dissecting away. Said they will go at least another hour and a half... probably longer! Pray for Dr. Sun!! I am in aw at his concentration and stamina!

7:30pm update.... OR nurse called to say that Dr. Sun is still working away diligently. She said they would call at 9 pm with the next update! Oh my. Pray for Dr. Sun for focus, steady hands and supernatural focus. I think this waiting is the hardest part for me!!

7:15 pm.... Nat's girls waiting for word on him... It has been a LONG day so far!

6:15 pm update... Dr. Has moved from tether to first cyst... still working away... Nat is still stable... Next update around 7:30... please keep praying!

Some of my dear sweet friends have been lighting candles to remind them to pray for Nathaniel and posting pictures on Facebook. This touched my heart so much that I decided to pull pictures of the candles and post them here too, so we can always remember how loved, supported and prayed for we are during this journey! Thank you ladies. I love you all!

 

 

4:45 pm update.... Nathaniel is still hanging tough in the OR... He is stable and doing well. Dr. Sun is still working on untethering the cord, and can see the cysts, but hasn't started removing them yet. Next update should be around 6ish. Thanks for continuing to pray for us! We feel so loved right now!

 

3:00 pm update... Nathaniel is doing well, Dr. Sun is hard at work. Everything going as planned. Next update due around 4:30....

 

1:15pm... So... I just got the call that he is fully asleep and they have him positioned for the procedure... Dr. Sun just started working on him...

 

12:05 pm.... Just took my boy back!

 

 

11:15 am ....A silly game of go fish while we wait and wait and wait..

 

 

11:00am... procedure was supposed to start at 10, guess we are running late! Here is my FB status from Nat's funnies during this time..."Oh my son... he is hilarious... he is sitting here looking at me and says "oh mom! I have given you more white hairs!" Glad he knows where they all came from... He is offering to pull them out, but I am afraid if he pulled them all out I would be bald! Lol" And you are so NOT getting a picture of my grey hairs to go with that!

 

 

9: 30 am ..All dressed up and no where to go yet.... at least we get to play during this waiting time!

 

 

9:15... Playing with my boy while we wait! He is such a trooper!

 

 

9:00 am... we get to move from waiting room 1 to waiting room number two...

 

8:30 am... check in and wait...

God is SO Great!

 

I am continually humbled and blessed!

 

It absolutely amazes me HOW MUCH has gotten done in the last week!

 

Thousands of soap bags for a very special client.

 

Loads and loads of rummage sale items brought here.

 

TONS of Rummage Sale items sorted, priced and stored away.

 

Grady's quilting finished so I can reload the quilting machine with Baywood's quilt.

 

Speaking of Baywood's quilt, we pieced it this week!

 

Meals with dear sweet friends!

 

An iPod filled with Praise and worship music from a sweet sweet friend.
(a side not on this... this sweet sweet friend went home to be with Jesus between the start of this post and my actually posting it... this exchange is the last interaction I had with her... this just went up 1000 fold in specialness!)

 

My yards all cleaned up and looking FABULOUS!

 

A bunch of TV interviews, and lots of great love for Project Surf Camp coming from a horrible violation.

 

Through  a heart stopping, breath taking blessing my rent is paid for June and July so I don't have to think about that while I am gone.

 

A nice family dinner with my brother whom hasn't spoken to me in YEARS.

 

Time with my sweet sweet nephew, and time for my kids to play with him too.

 

Another family dinner with Grady and Petra... so good to see him happy!

 

 An new key for my car so I no longer have to be terrified of loosing my only key.

A rummage sale that took my to my knees in humble. I can't not wrap my brain around how much was raised for our travel expense from this event. God is so amazing!

A bittersweet Sunday with my RHCF family. They way these folks live love out LOUD is beyond words. Such servants and followers of Jesus. So blessing to be part of that family.

I finished the Baywood Art Legacy quilt with the help of MANY people. And it got hung up in time for the Last Bear Hug!!!

Nathaniel made his promotion, the Last Bear Hug, as he moves from the elementary school to the middle school next year. This was a precious time with his friends, teachers and school staff.

At the last bear hug, Nathaniel was awarded one of three citizenship awards. Mommy is so proud of the little man he is becoming!

After the event we went home to a house filled with MANY of our friends, family and Brothers and Sisters. We laughed, ate cake, celebrated Nathaniel and they prayed over us. It really touched my heart how many people showed up late at night to love on us one more time.

Through tears and heartbreak, Faline and Josie helped me get the last stuff pulled together, my house cleaned and the laundry done (because I am one of those crazy people who can't leave a messy house or dirty laundry).

We had travel mercies on the way here and the trip sped by.

We had great appointments yesterday to get ready for all of this.

We got into the low cost family house which is very close to the hospital and we got a free parking place!!!

Through the whole journey I have had dear friends holding my hand, talking to me all hours of the day and night to bring smiles to my face and calm my heart, and plenty of hugs.

I am humbled by all the people who have come along side of us to make this journey possible and bearable. God WILL be glorified through it!

Each of you that has give even just a little of yourself for our journey, words can not express my gratitude... and THANK YOU is too little, yet all I have. You are so special.

So now....

We take the next step.

Nathaniel will be having the first of his surgeries today......

Here we go...
in God's grace and tender mercies...
covered in your prayers and energy....

Let the next chapter begin!

 

 

 



Nathaniel's last Bear Hug

Monday, we had Nathaniel's last Bear Hug Promotion (and all of the rest of the 6th graders too... but you know Nathaniel was the important one in my world, lol!)

 

One of the first things I saw when I walked in was the Art Legacy Project FINALLY finished and hung up on the wall!!

 

 

I am probably a bit biased... but I thought it looked AMAZING! So honored to get to be part of this!

 

Here is my handsome big guy... how did he get so danged grown up?

 

 

Nat finished 6th grade with this one other kiddo in his class. These two have been through A LOT together this year. Praying next year is easier for these boys.

 

Nat has some very special people in his life at Baywood. We are very sad to be saying so long to many of them. The man in this picture is one Nat really looks up to, he is a very special guy who always lifts Nat up and treats him with honor and respect. I am so glad, that with all that Nat has going on in his life he has been about to bond with this guy. Too bad this guy is taking off to tour the world, lol. But I know how much Nathaniel respects him, and I think he has learned a lot from him! Precious gift!

 

Another special friend is Mrs. C, who has been his teacher for the last 4 years. She has really challenged Nathaniel to grow in many ways and we love her so much. Good thing we have ways of getting ahold of her, because I am not ready to say so long to her yet! Amazingly gifted teacher and person with a heart of gold!

 

 

These two ladies were Nathaniel's two teacher in his 7 years at Baywood. Mrs. D had him in 1,2 & 3 while Mrs. C had him in 4, 5, 5 & 6. They both touched our life deeply.

 

He is another friend we are saying "so long" to... this kid has a FABULOUS heart and is always so kind to Nathaniel. I really like how these boys relate to each other, and the kindness and compassion extended! In my heart I know this kid is going to make a BIG mark on the world!

 

 

When the ceremony started we got a surprise right away!

 

 

Nathaniel was honored with one of three citizenship awards given that night!

 

He was VERY excited to receive it.

 

Then it was time for each student to get their last Bear Hug...

 

 

at our school, Bear Hugs are the citizenship awards given at assemblies each Friday. This is a sort of rite of passage for them.

 

And each student got to introduce and thank their parents. It was very sweet!

Then it was time to shake hands with everyone like a big man!

 

After we were done at the school we headed home. Since this was our last night in town for awhile I put an open invitation up on Facebook and with our friends to come celebrate Nat and pray over him one last time before we left...

 



 

I was ABSOLUTELY stunned and blessed by how many people came to bless us!

 

So humbled by how much we are loved!

 

When I put the invitation out I never considered that people would bring gifts! Seriously never crossed my mind!

 

But as you can see, Nathaniel was totally thrilled with the attention and the gifts!

 

This was a wonderful evening that touched my heart deeply and we all greatly enjoyed. I am so proud of Nathaniel and all of his hard work to be a good student and a great citizen in the midst of all he goes through!

 

Love you Nathaniel!

You are GOING PLACES boy!