Wednesday, March 29, 2017

Of Mortal Ills Prevailing




Prayer Warriors,

We left this hospital stay with three extra medicines, a nebulizer machine and a regimen of continuous tubed feeds by machine. All of which are new to us and without a discontinue date except for one drug. I’m sure many can identify with what it’s like leaving a hospital and knowing things will be different going forward. It’s unsettling. We will have to depend on another medical contraption and drugs that we didn’t need before we entered.

It seems Anna and her daily life is becoming more “involved” as they say in hospital lingo. All this is potentially heartbreaking and despairing. But the best is yet to come. The Day of the Lord is coming and for someone like Anna it means a deliverance from inability into eternal ability. We remain grateful for all the medical fixes until that Day, but in my heart of hearts I yearn for when “my faith shall be sight.”

It takes a force much greater within me to enable me to continuously serve, to wait on God for betterment. The demands of taking care of Anna have been intense on Lindsey and I. I will sum up the caregiving for this common cold by saying “our striving would be losing were not the right Man on our side.” And He is, God is for us His promises will come to pass. Tomorrow will mark two weeks since the start of this latest illness. 5 days at the hospital, it feels like much more.

Please Pray:
-For sleep and communication to oil our marriage. We are up many times at night.
-For a persistent attitude of servanthood instead of complaint.
-For faith in the Day that God foretold us about. For the full healing it will bring. May this be a rich buffer of hope amid these demanding days.
-For a hymn on our hearts that speaks richly into our circumstance and offsets any fiery emotional dart that Satan would try.
-For God to end Anna’s virus, mucus and reflux. They are not welcome and have combined to hospitalize Anna.
-For Anna to have clear throat and lungs.

In a note of pure joy, this last week God has enabled/taught/encouraged Simon to walk. How incredible it is to see Simon taking this milestone. Praise God for how naturally the brain has brought coordination and ability to his limbs. Granted he looks like an orchestra conductor with both arms out while jiggling along on two feet. How fun and awe inspiring.

Love,

Nic, Lindsey, Simon, and Anna


"He will swallow up death forever;
and the Lord God will wipe away tears from all faces,
    and the reproach of his people he will take away from all the earth,
    for the Lord has spoken.
It will be said on that day,
    “Behold, this is our God; we have waited for him, that he might save us.
    This is the Lord; we have waited for him;
    let us be glad and rejoice in his salvation.” Isaiah 25

Tuesday, March 21, 2017

A Golden Day

During rounds this morning the doctors were very impressed with Anna's improvements. I know God was listening He gets the bravo! what wondrous plans He has for Anna.  So it appears Anna's lung capacity has returned. That was the critical part. I can tell because the base of her throat isn't caving in anymore when she breathes. As of 8:30 tonight Anna is off supplemental oxygen.

The virus remains. Our Doctor described this type of virus as "go through a whole box of tissues in one afternoon virus". Since Anna cannot blow her nose on command, suctioning cannot keep pace with the amount of post nasal drip. So a portion gets aspirated, this is the remaining concern for Anna's lungs.  we are needing the ejection of the mucus from her lungs. And for the faucet to be turned off. Basically Anna's coughs and our suctioning are the ticket out of here. 

Currently Anna is sleeping lots, we are tube feeding her so she can rest. We wake her up to suction as needed, and it's needed. I'm grateful that the doctors let us do the nose and mouth suctioning because often it can't always wait for the nurse to respond to our call button. Part of Anna's treatments is deep suction four times a day. which consisted of a tube that goes down to the trachea via the nostril. 

Other things I thank God for today, graces in the storm: 

-Lindsey spent the night at home and slept well.  
-Our friend Nancy from Chicago flew out to help us for a week. 
-Simon walked many times unaided like seven steps!  He is not allowed on the same floor as Anna so him and me were playfully entertained in the cafeteria. We played with two bendy straws and a cup of water for like an hour.  
-A family we know that has had their son hospitalized here for months surprised us with gifts for Anna and Simon. What an incredible others-center gesture.  
-I am delighted that we are past hospitalizations requiring her to be in a crib. Anna has a bed which means that parenting becomes much more cozy and comforting with the big bed. "Rest easy and stay the course dear Anna."

Please pray:

-for God to give Anna strength and a stronger immune system
-for more mucus clearing coughs, and an end to the post nasal drip. 
-for Miles, the kid of the fore mentioned family. That he would continue to grow defy the odds and adjust to the needed medical devices in his fight.  
- for Anna to stay at room air and not need a supplement
-for God to continue to glorify Himself through Anna's hardships. 
- for the virus to run its course on out of Anna
-for wisdom regarding discharge date and continued home care. 

I sure am untied to you all in Christ, Thankful you for taking the time to walk in our shoes, and kneel before God for us. 

Nic, Lindsey, Anna, and Simon

Monday, March 20, 2017

Omniscient and Healer




Thanks for your intercession, 

No hospital can promise 100% certainty of what the problem is. The blessing of being in a hospital is that the variables are more controlled and everyone is pulling for you. At home there is more rest, but my imagination can wander off to where the symptoms become Goliaths.

 So when your non-verbal kid is sick and cannot tell you what or where it hurts it's good to be at a hospital. But better still is to know someone who is omniscient. I do, thankfully He's in control, oh and he happens to be the Healer.   Substitutes need not apply, My own medical knowledge need not apply. How gracious is He that He would reveal the roots of Anna's illness through the gift of Childrens hospital. 

So we are pretty sure we know what we are up against:

Anna has a virus (common cold) that she has had  since Wednesday. As that is working it way out, it appears that a lung collapsed. She doesn't have pneumonia but it's not out of the question that it develops either. As Anna is resting the extra oxygen is pumping that lung back up to a working  state. Anna is not fighting to pull in air as much today. Lots of secretions coming out. The treatment plan is a handful of steroids, chest percussion therapy by hand and by a vest, deep suction and encouragement. 
Anna will be able to go home once she doesn't need supplemental oxygen and can be on room air. The unofficial guess is between 4-7 days. 

Please pray: 
-for the virus to leave her system, fever excess mucus
-for her lungs to return to full capacity. 
- for her throat to be soothed and not so scratchy 
- that it would become easy to cough again. 
-for her to not go into extension (cerebral palsy tone) during suctions or cough fits.  
- for rest for Lindsey, Simon, and I 

Tuesday, March 14, 2017

Asking Always Asking Abba






Our birthday girl Anna was carefully placed in her stander. She was adorned in a fancy dress, with a flower headband, and a tiara on top. Her favorite things were on the tables and in the decorations. We dedicated a little space for our guests to write a benediction for Anna if they wanted to. The place was humming in conversation as some gospel songs set the mood. There was an abundance of food and conversation. Thank you Lord.

At one point we gathered all the party-goers together in a circle for prayer. I focused on Anna who was across from me; I could tell she was gladly going along with the afternoon’s festivities. My nerves and manic thinking kicked in as the emotion of this significant event intersected with my public speaking. By God’s grace I made sense and kept things reeled in.

As Anna’s father, it was memorable how God brought together Anna’s servants, prayer warriors, friends, and family to celebrate how far she has come. We felt supported by grace and love.  I looked around at the people present and felt I could never thank them enough. Isn’t that how it feels in front of God, we can never thank Him enough?

We know that God didn’t make a mistake in Anna’s afflictions, or in giving her to us. Therefore, we trust that in His time He will heal and continue to meet our needs as we present them to Him. It’s this asking and waiting that has grown our faith life. Our journey with Anna has frequently put us in a place of need, which can be embarrassing or burdensome. We are left asking God through the intercessory prayer with e-mails, we ask God to meet our needs through His Body, for His glory. We ask God because we mess things up, it’s often too much. We ask God and we see His Church rise to the occasion as responders.

Locally we have people that listen and guide us, we receive many free meals throughout the year, free childcare, weekly helpers that help clean, and we have also received much for our material needs, all in the name of Jesus.

The Church abroad encourages us. Though we haven’t fellowshipped in years there are many praying and sending kind words to encourage us on the way.  Prayers are frequently being presented to the Lord pleading for Anna. I’m convinced that this is all otherworldly; it’s a Christ-in-them love that makes them still care for Anna and walk with us.

I know that in my flesh I would not have the attention span it takes to read these prayer e-mails unless inwardly compelled. That is why Jesus is the resurrection He came to indwell just as the New Covenant promised. Yes He died be the ransom for sinners, yes He died to restore our relationship with our Heavenly Father, and yes Jesus arose to indwell us with restorative, resurrection power that cares for the least of these.

Please Pray:
-Praise God for Anna receiving the CES waiver for Medicaid. This has been a year in the making, last summer we were denied without much clarity as to why. Lindsey resubmitted six weeks ago and were accepted! This means much in terms of more therapy, alternative therapy, respite (for date nights!!), mobility equipment for the house/car.
-Praise God for Fletcher Miller school. Our visit was good, they have so many accommodations there we hope to start at the beginning of April.  
-Praise God for a handle bar extension in Anna’s new wheel chair, it helps out a lot.
-Pray that the school nurse would call us to set up the “health plan”, she said she would last week but didn’t. I don’t know why she hasn’t yet.
-Pray for progress in therapy, Her OT is working on tongue movement. PT is focusing on tone managing, kneeling and walking at times.
-Pray for the walker we ordered that it would be approved and would arrive sooner than expected.
-Pray for God’s wisdom and direction regarding Anna’s reflux. We have compiled a chart, daily she refluxes 13-38 times. We are considering an intestinal liquid deposit tube so he stomach would be less filled. This is hard as a parent to watch and clean up. We are desperate for a touch from the Lord regarding this suffering. 

Thanks, 

Nic, Lindsey, Anna, and Simon

Saturday, March 4, 2017

Thanks to the God of Miracles

Prayer Warriors isn't it amazing that God is still perfect, holy and righteous no matter how He answers our prayers? It doesn't change Him to answer our prayers, it changes us. I'm in love with Him because of how He has answered my prayers. Starting first with my prayer to come and take up residence in my heart on November 10th 2006. But He is gracious beyond words to still answer our prayers...

Its Anna's third birthday and it feels right to collect the answers to prayer from this last year. As I revisited the old prayer e-mails from the last year I grew glad because of His faithfulness shining through.

From discovery to treatment stem cells were a big part of last year for Anna. Among the 26 prayer e-mails more than half of them ask for prayer about stem cells. As we embarked on that journey a year ago I wrote this paragraph, and it still resonates well with me:

"Somewhere in the PT, OT, Speech, Feeding and Music goals, there is the "what are we believing God for regarding Anna" goals. Miracle therapy if you will.  God's plans for a full healing will never be out of the question, its simply a matter of when. Anna's days of CP and reflux are numbered. We long for a healing today, actually it is tempting to demand it, and make it an idol. However God knows we need Him just to stand as Anna's parents. So when we find a therapy, miracle, and medicine for healing Anna we humbly ask that God might glorify Himself through it. Its His instrument."
God's answered the prayers we prayed:

Stem Cell Treatment:
-God is faithful to us because He gave us guidance, education, and testimonies about cord blood stem cells and if they were a possible benefit for Anna.
-God is faithful to us because where our income and insurance said "no" to this treatment God said "yes" by opening doors we had not considered financially.
-God is faithful to us because 8 hours of travel with Anna and Simon came and went, God also kept us safe in a strange place, we were directed when our Spanish failed us. God gave us kind Panamanian people to be with.
-God is faithful to us because He gave us more than what we were asking for by having our friends journey with us to Panama City, having our condo sell at just the right time for just the right price, for the passports coming in quickly and work supporting the time off for all of this.
-God is faithful to us because we have seen great improvement to Anna's vision and a lesser spastic quadriplegic tone.

Shunt Revision:
-God is faithful to us because on Mother's day Anna's shunt was malfunctioning. She lay constantly sleep unresponsive to even needle pricks. We had emergency surgery that night.
-God is faithful to us because He calms us in the storm. we sent out hurried e-mails desperate for God to show mercy and glorify Himself. We needed help trusting as the uncertainty in the moment grew. We received phone calls full of prayer and a pastor that wanted to wait with us that Sunday night.
-God is faithful to us because He brought due process by an accurate diagnosis, hospital transfer, a skilled neurosurgeon we had never met. He replaced the tube going to Anna's ventricles in her brain.
-God is faithful because as soon as the ordeal started it seemed to conclude. Anna recovered so quickly. Prayer warriors lifted her up in prayer as she had to cycle through hand-foot-mouth disease right after the surgery.
-God is faithful because His plan caused our plans to be surrendered up to Him. We canceled our trip to Chicago for graduation without regret because Anna needed to be well. Its always healthy to remember that God is in control of our lives and our plans are an offering to Him not something to fight about.
Intensive Therapy:
-God is faithful to us because He raised 90% of the funds to finance our trip to attend a clinic in Portland Oregon for three weeks.
-God is faithful to us because we had accommodations better than a hotel for the three weeks at a place seeking to minister to us through hospitality.
-God is faithful to us because through the hard therapy we saw Anna capable of more than we thought and we became charged to push onward.
Other answers to Prayers:
-God is faithful to us because He brought a second income this last year by Lindsey becoming Anna's CNA caretaker, we prayed for a way out of a bad company that first employed her to a better one that holds the CNA accountable.
-God is faithful to us because we asked for a medical bed and a wheel chair to suit Anna for many years to come and both were given to us this last year.
-God is faithful to us because in He brought an Occupational Therapist and an overnight nurse. We were asking for several them times last year.
-God is faithful to us because He brought us through three virus infections one of them was the RSV from October to January.
-God is faithful to us because He restored the canceled trip to Chicago as we headed out there in January.
-God is faithful to us because our IEP process was covered with blessing, counsel, and detail.
-God is faithful to us because He made Simon to be a warm presence and close companion to Anna.
-God is faithful to us because our insurance coverage covers so much that we can focus our funds on stuff not covered by insurance rather than paying off medical debt.
-God is faithful because Anna has received weekly speech, PT, music therapists in our homes, massage bi-weekly and vision monthly. 

The Waiting Room: Prayers We still hope to be answered:   
-God is our hope for core muscle building in Anna resolving reflux and giving her head control.
-God is our hope for the CES waiver which we are reapplying to, this waiver allows for more therapy coverage and modifications to cars or home.
-God is our hope for more skilled training for us parents for brain injured children
-God is our hope for Anna to return to doing intensive therapy so that her ability to walk would inspire amazement.
-God is our hope for Anna to eat solid foods and to have a clear airway. May God grant ability in her throat especially when sick.
-God is our hope to extend the vision progress we are seeing Anna experiance. Bring ability, caring teachers and cool toys.

God is so able, He proves that to me by this list and this doesn't even include the little things.
Love,
Nic, Lindsey, Anna and Simon