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 

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

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

A Faith-Filled Follow-up

 

Dear Prayer Warriors,

Here’s the scoop, two weeks ago Anna was checked out by many therapists in the Jeffco school district all at once. Since then they sent us three pages of ability evaluations. In response Lindsey edited their findings, elaborated about Anna’s strengths and weaknesses, provided history/diagnosis, prioritized Anna’s disabilities, made goals, read a dry book on Cortical Visual Impairment (CVI), and had coffee with a mother who had already gone through the process. I helped by taking care of the kids, reading what she wrote and adding a light-hearted joke here and there.

It was quite an ordeal just to make it to the IEP meeting. What made things a bit more tense is the number of horror stories about bad IEP meetings we’ve heard on our parent forum: School districts not accommodating, Disabilities being classified too generally so the goals are vague, parents crying, comments that put a child “in a box”, the list goes on. That is why we knew we needed to ask for prayer. Now that we are on the other side of that harry beast I can see how God escorted us, chilled us out, and led us through it in 2 and a half hours.

The school district was incredibly prepared. I didn’t feel like it was a chess match it was more like Rummikub when you borrow one of the displayed tiles from a neighbor so you can complete your straight. They had great goals for Anna, coming alongside us complimentarily. We selected vision as the disability for the school to focus on. The vision coordinator there was so impressed with Anna that she asked to have Anna assigned to her.

Which brings me to another grace received this week; in preparation of the IEP meeting we had Anna’s annual CVI assessment. It’s a 1-10 scale (10 being normal vision) and Anna scored a 6-7. Last year she was a 4 and the year before that she was a 1. This girl is beginning to see! Now we got her school focusing on it too. There’s no telling what ability the Lord has in store! We have praised and trusted Him in blindness so I know we can keep on praising and trusting God in sight no matter. Alleluia.

Please Pray:

-For Anna as she has to learn to say good bye to therapists that only work with the early intervention system (Ages 0-3). We thank God for one in particular that connected with Anna, drew out potential, and cared so much.

-For Anna’s new schedule and routine, she will be going to a school 30 minutes away during nap time with much social interaction (soon after her third birthday).

-For God to be honored at Anna’s 3^rd birthday party as we celebrate her life. May we would find creative ways of testifying the Lord’s goodness and faithfulness to us in this past year.

-For doors to open on Anna’s new year, for a resolution of her reflux. For another intensive therapy trip and for the Doman “Patterning” classes Lindsey and I would like to take.

I remain so thankful for you prayer warriors, I know prayer to be more precious than any financial contribution and more lasting than “good vibes”.

Nic, Lindsey, Anna, and Simon

Dependence Afresh on God

 

Dear Prayer Warriors.

As Anna’s parents we want her talking over seeing, and seeing over walking, and walking over grasping, and grasping over eating table food. We have been forced to think in these terms as we draft up the legally binding IEP (individualized educational plan) this coming Thursday with our school district.

The dilemma is that our time and effort for therapy will make more fruit if we get away from our list of priority and observe more of what Anna is showing us as ability. These days vision and gross motor seem to get us the most response. So it gets complicated when parents want to revise an IEP’s because their child is suddenly experiencing a surge of ability in something that wasn’t a focus of the IEP. We need wisdom and a heart fixed on perfect peace for this meeting.

I’m always humbled that in my heart I have a voice of thanksgiving to God for the mercy afforded us because Anna’s IEP does not include seizure management or oxygen administration. Another perspective of grace that the Spirit places is that I live in a country that has designed a system to optimize Anna’s cognition, physical ability, and social needs through the school system. So we get a small respite. I always picture the poverty of India and how my family would fare in caring for Anna in that environment.

Anna has helped us see how much we depend on God regarding all things.

When the deluge of diagnoses kept coming, we felt helpless yet God shepherded.

When financial pressure kept coming, we felt helpless yet God provided.

When progression turned into regression of ability, we felt helpless yet God encouraged us.

It has become clear that our plans, the control we have over our lives, is such an illusion. Pride and Satan work to keep that illusion realistic like “I’m not a man if I can’t handle what life throws at me.” However I have found that there are times when life throws way too much at me. It is then that I have learned to depend, cry out to, and wait for God. The Lord holds us together because He is Sovereign. We go to Him with our illusion of control over Anna and say “Lord have your way and plan with her.”

Please Pray:

-That God would bless Anna's new GI medicine. To help resolve the reflux.

-For Anna to be surrounded and providentially placed at the right school for her with the right team of teachers and therapists.

-For wisdom as we draft the IEP document Thursday.

-For time to blend her food, she has been getting too much Gerber.

-For her upcoming third birthday celebration that there would be no illusion of who has been sovereign, May God get the glory for that celebration of Anna's life and He has helped her everyday.

Thanks for praying,

Nic, Lindsey, Anna, and Simon 

Redeeming Hardships, Pressing On

Praying Warriors, 

In crisis everyone is rocked with the devastating news, everyone helps. There is great testimony during this time. The comfort of cards, meals, and money all make a difference as the dust settles. It's only natural that the world around moves on, they don't live in the crisis context, nobody stays there but to those whose lives are forever changed it’s a hard road to adjust to the “new normal”.

Thankfully there have been many helping hands as we welcomed Anna Elizabeth almost 3 years ago. Our way of life is amended to care and serve Anna, mountain after mountain the trials come and go. We want to do all we can. As parents the learning curve is steep and life can storm. Honestly I’m amazed that people still read these and want to keep up and pray with us. People I haven’t seen in years even. With Anna there is much repetition of issues, slow progress, and our faith sounds parched and raspy at times.

Lo-and-behold we made our first visit back to Anna’s NICU hospital Evanston North Shore. Lindsey and I did date night at the hospital cafeteria, the line cook still hollers “what’s yer cheese!?” We asked security if we could sit on the couches outside the entrance to the NICU. Those were our “living room sofas” where we greeted all our many visitors for two months in early 2014. As we sat and took in the setting, we were moved to tears of thanksgiving and of memory. We prayed in thanksgiving and shared our testimony of God reviving Anna with a nurse there who came to check on us. We remembered her faintly, she was blessed and broken to hear how Anna is doing now. She was so comforting to talk to. I notice one theme in my life is God returning me to the hardest, darkest of places and times to write a renewed story. He wants me to know that it doesn’t hold me captive, but that Christ in me has redeemed those memories and pressed me onward towards His goal for me.

The church that upheld us during Anna's birth left us humbled. We knew that they loved us, encouraged us, and prayed for us when it mattered most urgently in the crisis -the revelation we found is that they still love, encourage, and pray for us 3 years later! We as parents felt the love. More surprisingly, it made me feel purpose for Anna. I know God has a plan for her, but now I saw it unfold. On this visit, she was an encouragement to many, her smile and joy was new to these faithful prayer warriors who only remember a 4 pound 9 ounce baby.  People marveled at her height, her goldilocks, and her sweet-soft personality. Before each well-wisher was Anna the girl who is recipient of answered prayer!

God impacted us so much through the hands and feet of that church. To God be the glory! how beautiful God is to utilize His children to meet our needs when He could have done it all solo. God employs “the middleman” to show His love and we are a family well aware of that. Isn't that what eternity will be like?

For our family, what outlasts our best efforts as parents is the love of God.  Lindsey and I can attest how God unified our marriage through His gift of prayer. God’s gift of the Scriptures spoke to us in uncertain times letting us know that no matter what we are never alone. The love of God has so much mercy that every tear is accounted for and every sin can be washed; a desperate heart crying for help will always have rest in Jesus Christ.

Please Pray:

-For God to open doors for us to attend the Institutes for the Advancement of Human Potential in Philadelphia for one week. They specifically teach Doman therapy. which isn't something covered by our insurance.

-For approval of our second request for the CES Medicaid waiver as we as still waiting to hear back. There are many added benefits to this waiver that i have already mentioned including a help to pay for installing a ramp in a minivan,

-For the continued health of Anna, for all her coughing to stop at night, for the administration of all her medicines, for her reflux to stop as she strengthens her core, for better ability to track objects with her eyes.

-For more triggers to bring her to laughter, we have been delighted in a surge of laughter from her lately.  

-For our night nurse Carroll who started this week (two nights). That she would develop a bond of care and lightheartedness with Anna that causes Anna to progress across the board. That she would have wisdom and resources to notice things Lindsey and I haven't considered.

Holding the Scriptures up to see My Reflexion

At the Burning Bush there's a side of Moses that I often latch onto because of my role as a special needs parent. I find that I have many of the same answers that Moses did.  In light of what God is calling Him to do, Moses is pretty sure God is talking to the wrong dude.

God: "therefore go. I am sending you to Pharaoh so that you may lead My people, the Israelite out of egypt." Ex 3:10
Moses: "Who am I that I should go..."
God: "I will be with you..."
Moses: I if I go how will the Israelites believe me
God replies by telling Moses the summary of everything that will happen.
Moses: "what if they don't believe me?"
God then shows him some of the signs Moses is to perform like the staff changing...
Moses: "Please Lord I have never been eloquent... because i'm slow and hesitant in speech.
God: "Who made your mouth? Who makes him mute or deaf, seeing or blind? Is it not I? Now go! I will help you speak and i will teach you what to say."
Moses: "please Lord send someone else."
God burns with anger at Moses but finishes by giving Aaron as a spokesman

God graciously is patient, clearly present because of the burning bush, He is prophetic in describing the events, and God even offers Moses and understanding of His perspective. God's point of view is offered when Moses comes up with the excuse of being a bad talker. "Who made your mouth?" Dang, I would not want to be Moses then and there. I think Moses was looking at himself rather than on God.

God is not asking me to lead his people out of Egypt, I'm pretty sure. But He is asking me to lead my family. I resonate so clearly with Moses' reception of God's information. God gave me a perfect peace the day Anna was born, amid trauma and tears there was God holding us together. But I was certain that I could not withstand a brain injured daughter. "Who am I that I should have a medically complex kid?" I work at Target and go to seminary what in the world do I know about Hypoxic ischemic encephalopathy? As the questions unfolded and decisions were needed we presented our circumstance to God kinda like the promise He made to Moses "i will be with you."

At times I contemplate with the fear of man similar to Moses when he asked God twice about others "what will people say?" I often wonder how others will treat Anna and my family. It's hard to navigate flippant remarks or see loved ones not know how to respond to Anna. Growing in God has helped me give grace to others that hinder and unknowingly tempt us to be upset or sad. If I was my old self I just know I would snap on some defensive confrontational rant. But God is with me He knows and therefore I rest my case on Jesus.

God responded to Moses' concerns about Israel accepting him with prophesy and equipping. I can say that God has not prophesied to me about what town or job is in my future, however God has promised much to me through His Word about Anna and i will always hold Him to that. For example He has a plan for her, God loves her, Anna is no mistake or surprise to Him and God is most definitely working through every detail of this with us. God is good.

As for equipping i feel that God has shown the miraculous to our family time and again. From gifts, meals and volunteers at the church, to Medicaid, United Healthcare and my condo; we are not in need in fact we received Anna's first wheel chair recently. It sounds weird being grateful to God for a top of the line wheel chair when He has to power to cause Anna to walk. But what about the kids like Anna born in a third world country? This equipping gives me courage for the future. What have I to fear when past fears he quenched exceedingly well.

As I continue the creative paralleling  Moses progresses his dialog into excuses ("I am slow in speech...") and ultimately asking God to choose someone else. Anna's birth and the ensuing months were way too much for me to handle. "Pick someone else" came across my mind too because I have a history of mental illness. But that was Satan talking trying to exploit my past weaknesses. In truth, so much faith came from calling upon the Lord with my wife then. God was so steady in shepherding us moment by moment. It is by God's grace that I can say that have always wanted to be her father and am privileged to be that for her though it isn't always easy.

 There are times when I do grumble about stuff like the reflux, the sacrifices, the medical needs, the progress, our space, and therapy blues. God knows I get emotional, bi-polar, weep, and think everything is gonna fall apart -that's not very often anymore because Jesus calmed my storms and then looked to me asking "where is your faith?"  Faith to see God in the circumstances that cause me weakness.

Finally God was provoked to anger and gave Aaron to grow Moses into leadership. Though I  anger God with my appeals because I'm looking at myself rather than on Him, in His loving-kindness he gave me Linddsey a person to be companion through this journey. To grow me into fatherhood, what a gift Lindsey is to remove my excuses and constantly  go far and wide to where the Lord leads us.

Please pray:
-Anna was diagnosed this week with a reactive airway disease. It's has similarities to asthma, she has coughed every night for the last three months needing repositioning while sleeping. They think saliva is seeping into her lungs slowly while sleeping. Pray that we remember to give her three medications for this. And for our appointment with pulminology next month to have a strategy when Anna gets sick. Please pray that we would qualify for the chest percussion vest, this would ease our home therapy.
-In three weeks we will have a night nurse helping us two nights a week. Pray for our relationship with Carroll the nurse to be built on a foundation of care for Anna and trust.
-Please pray for a greater surrender to God on our parts, Anna is pushing 30 pounds and is tall. It's wonderful to still be able to transfer her ourselves. But she is getting heavier, her diapers need changing, her care will become more challenging. And so we have to double check that we are still in that spot of trusting God will strengthen us and give us all we need to willingly serving Anna. Help us to ask God for a servant's heart that is greater than Anna's greatest need.
-Pray for a ramp for our van because the new chair is too heavy and odd-sized. there are several options. We are also asking God for an adapted minivan in the coming two or three years.  May the Lord have a testimony for these needs too.
-For Simon to rid himself of his sickness.