A Story About a Door

In our journey of asking, seeking, and knocking for Anna’s full healing we have come to the doorway of stem cells.

Right after Simon’s birth we heard about other children with Anna’s injury benefitting from umbilical cord stem cells. We were discouraged to find the limitations the United States has placed on this treatment. In our research, we found only three universities doing clinical research on stem cells for children with cerebral palsy. Their qualifications were too rigid for Anna to be their lab rat.

We prayed (and pray) that God would graciously close doors for us if it isn’t His best for Anna. When it comes to stem cells the results vary. Some kids experience no change, some can walk and none are fully healed. Most parents state improvement in muscle tone, core strengthening, and vision. All of which would benefit Anna. It’s the abundant testimony of other special needs families that has led us to keep on asking God for this treatment. Anna has been accepted by two of most well reputed, established umbilical cord stem cell providers in the world.

  “Where God guides, He provides.” About a week after learning that we were not qualified for any US stem cell research, we found the big price tag for umbilical stem cell injections in other countries. Our insurance will not pay because its considered alternative. We prayed, brought this to you guys to pray over, we started a GoFundMe account and looked to fundraising. We were desperate, I was ready to slam this door shut. We drug our knuckles to do fundraising on top of serving Anna and Simon daily. My attitude tanked, “stem cells a privilege for the rich.”  The fundraising did bare some fruit, but it was too little a bite out of the funds needed. 

The greatest warning sign was that my heart was telling me that we were doing these things on our own strength. Rather than being led by the Spirit who always supplies the strength for His will done His way. We relented, and found a whole new dependence on God as our needs persisted and our resources did not increase. We looked at the door not knowing if we would ever walk through it.

But God has mercy, He still provides. Surrender is what came next as we waited and wondered how? We prayed with increasing expectancy, “Lord use stem cells, make a way for us to get them. If it pleases You.” Once surrendered, we remembered His faithfulness to us during Anna’s birth and how He dispatched a supernatural amount of monetary gifts through the Church and our family. We were discharged debt free and had enough to pay for the move back to Colorado. Wow!

While the fundraising brainstorming was still churning, and the stem cell price tag was tempting to discourage us, God moved. My brother Will shows up one day and says “have you looked into the value of your condo?” By God’s grace, the market value of my condo in Denver had tripled the purchase price.   Whoa… Lord.

My Condo has been under contract for a month and Lord willing we will close this coming Tuesday. Last week we applied for passports. Once the sale is complete we will buy tickets and make arrangements for stem cells and the crucial follow-through with three weeks of intensive therapy. At last the door seems open.

The key to this door of healing is this:  If God chose to use a poultice of pressed figs to heal Hezekiah, or mud to give sight to a blind man, or a bronze snake to cure Israel, then certainly it is possible that He use umbilical cord stem cells from Panamanian women who just gave birth to bring healing to Anna. Let it be known that all credit, honor, and glory for any betterment that Anna may or may not have is the Lords. Our hope for healing is in Christ and not receiving stem cells.

Please Pray:

-That we keep our eyes on Jesus

-For the sale of the condo to be blessed. 

-For us to receive the passports soon.

-that we would not be stressed or make Anna feel stressed regarding the planning of the trip

-that Anna could receive millions of umbilical cord stem cells and that they would populate intentionally, miraculously in the areas of injury bringing healing.

A Promise for the Lame

Dear Prayer Warriors,

Daily we face two things, inexplicable suffering and hope in Jesus. We see Anna struggle, why her? Why everyday? We know she is lame, and we embrace her “as is”.  We also see our Savior and Lord. –What are you purposing through Anna? Why not heal her now God? Our daily walk of faith intersects with suffering and hope. 

Having a heart of gratitude helps, encouragement helps. Most of all, we must draw our understanding from the Bible and what it says about God, Anna, trials, and us. Otherwise, it will become easy to believe lies, depress, and demand answers instead of trusting in God’s greater purpose. Right thinking seldom comes from within, yet always comes from yielding to God’s Word, grant us wisdom Lord! So what does God Word say? currently? to my heart? it speaks:

For Anna a promise of salvation:

"In that day," declares the LORD, "I will assemble the lame and gather the outcasts, Even those whom I have afflicted. I will make the lame a remnant and the outcasts a strong nation, And the LORD will reign over them in Mount Zion From now on and forever.” Micah 4:6-7

For God a promise of my submission:

“Our God is in the heavens; he does all that he pleases.” Psalm 115:3

For Trials and us a promise of purpose and help:

“And not only that, but we also rejoice in our afflictions, because we know that affliction produces endurance, endurance produces proven character, and proven character produces hope. This hope will not disappoint us, because God’s love has been poured out in our hearts through the Holy Spirit who was given to us.” Romans 5:3-5

By God’s grace, Lindsey and I become a portrait of the servant Christ to a world that might not know Jesus as the Servant leader. Our little family, our little life which is so insignificant in the eternal realm is being used by God! In truth God doesn’t need us to accomplish His purposes.

Lindsey and I both gave our life to Christ Jesus as young adults. We lived out a good chunk of our life hugging sin, driven by emotions, falling for our many temptations, but then Jesus revealed Himself. His Truth freed us from hardships, defeated thinking, and addictions. Every day we need Him more, now with Anna that hope in Jesus is imperative.

The birth of Anna brought two people who loved each other even closer through the discipline of prayer. Before Anna we each had quiet devotion time with God -rarely ever shared time. Thankfully something new started when Anna came, we started doing family devotions daily. It is a priority so that Anna can listen to God’s Word even if she cannot see.

Please Pray:

-For Anna’s full healing and our faithful service to her until then.

-That the Word of God would have its right place and priority in our daily life.

-For the Condo sale to reach closing August 30^th, it is now under contract (to enable alternative treatments).

-For Anna’s tone in her hands and arms that she would not fist her hands or have her arms pinned against her. That she could used them with variation of range and ability.

-For us to find a way that she can communicate to us.

-For the reflux to stop.

-For the Anna’s bed, her new chair, and her CES Medicaid waiver to be approved and here soon.

-For Lindsey and I to draft a "special needs trust" for Anna and to write a will

-For God to lead our marriage and grant rich communication between spouses.

-For Simon and Anna to connect more in ways only siblings can.

We love sweet Anna,

Nic, Lindsey, Anna, and Simon

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A Summer of Good Things

Dear Anna's Prayer Team,

God is growing Anna into one sweet little girl. I have been so full of thanksgiving over how well Anna is doing. I can't say there have been milestones that excite therapists and doctors (reflux, vision impairment, and high tone persist). Most of Anna's well being seems relational. She loves it when we sing. Any fussiness she might have is put on hold if we are singing. I was singing "just a spoonful of sugar" to her today and she was kicking with delight wanting to engage in any way she can what fun.

We see evidence of a girl who wants to communicate but cannot get her message across. Her cognition is at work so may the Lord enable it. We received two things that help Anna express at no cost to us. One is a switch toy that says "hello" and "good bye" for her. It is Lindsey's recorded voice as the greeting when she presses the button. This is in the intro phase. The other is an Upsee, this is a harness that enables any non-weight bearing child to hang from an adult waist and walk in step with them (see the photo below). It is a relational tool because there is an added togetherness that we experience as we walk with her literally. The first time I tried it was Father's Day, that was a wonderful treat. I thank the Lord for the spiritual gift of generosity that He imparts to cause such gifts for our family. (look at that head control!)

 Simon is always interested in getting her attention. I can tell that Simon is learning that Anna is different. She is the only person that Simon will gaze at and he will not "win her over." So he remains looking at her wondering why she isn't looking back like mom and dad do. I know many special needs parents struggle when strangers look and "stare" at their child. That has not been the case with us. Most often I see the tenderest side of humanity when they look at Anna. It is one of compassion and frequently followed up with "your daughter is beautiful." 

Please pray for the following things as we give them up to God in prayer for Him to speak to us, bless us and give us direction.

-For The Lord to lead us in selling our condo in August at a favorable price because the market indicates this (this will make us debt free and enable Anna to receive those expensive stem cell treatments).
-For our fundraising to continue for the "intensive model" of therapy (not covered by insurance, we are over a 1/4 there)
-For God's timing, that Anna would receive intensive therapy right after the stem cells. That God who is more than able would bless and bring His healing via these treatments
-For The Lord to approve and enable our Medicaid requests:
        -A medical, enclosed, twin-sized bed for Anna
        -to switch Anna from the "life limiting waiver" to the "CES waiver" (Children's Extensive Support) This would enable additional nurse help and additional therapies like Aquatic Therapy and Hippo Therapy
- For clarity with Lindsey's Job as Anna's CNA.

-For wisdom and direction as we meet with the GI doctor tomorrow, to see if Anna is a candidate for the Nissin Fundoplication surgery for her GERD/reflux

Love,

Nic, Lindsey, Anna, and Simon

 

Our Self-Sufficiency does not Suffice (Prayer List)

First lets thank God for all that He has already done in Anna. She is getting better, her reflux has become more and more manageable, flaring up periodically not continuously, only a couple of times a day. We feed her consistently with a wide variety of foods and she has been gaining weight. We got a generous check for therapeutic toys from our county's early intervention program. Anna is getting introduced to therapy "switch" toys which will serve as a way to communicate. Anna continues to sleep through the night. Her smiles are aplenty. We have a good group of therapists supporting us at our home with times that accommodate us. We are also doing extra therapies that are not covered by insurance. Anna is getting better with brother Simon bonding too! O and thank God for family walks, we live next to thousands of singing birds that capture Anna's attention every time.   

In truth is humbling to depend on Christ, only He can makes us live a blessed life even when we are needy. It is our God who hears and upholds us -and on top of that He keeps us encouraged.  God be praised for all the many privileges we have because of private insurance and Medicaid. I know that it is the love of God at work, He is so steady-handed with us. I see grace after grace when it comes to the context of our life. 

Believing on Jesus for healing is just a question of when. Please pray with us about the following:

For Equipment:

-for a Sleep Safe bed to be approved by our insurances. its a twin size, crank adjustable mattress, higher off the ground (for diaper changes too), and encased

-for the durable medical equipment to be durable (our stroller breaks down lots)

-for Anna to understand that a pushing button can communicate for her, May switch toys grow her cognition

-for a Hyperberic oxygen chamber (rental possibly), Upsee, and other alternative therapy devices not covered by our insurances

For Vision Impairment:

-for Anna’s sight as she prepares for glasses.

-for minor eye surgery over the summer to adjust the muscles in her eyes that are causing a misalignment when she looks from side to side

-for the cortical visual area of the brain and the optic nerve to heal

-for the Anchor center (blind school) to continue to develop her eyes, as well as sensory development

For GERD:

-For the strengthening of Anna's core muscles that would help the esophagus sphincter to work properly to eliminate reflux

-For consistent giving of the Antacid, and easy burps after each meal

-For no acidic damage to the esophagus and no aspiration when refluxing

For Cerebral Palsy:

-For increased range of motion and stretching.

-For relaxed limbs (for low tone), able to summon strength intelligently as needed not erratically stemming from her spastic quadriplegia 

-For our PT Robin who engages Anna better than all our our previous PT's that God would used her to bring wellness to Anna 

-For Anna to be weight bearing in the hopes of her walking some day.

For Cognition and Speech:

-That Anna would be able to express herself in a way that we can better serve her, through signing, toys, etc...(what works for Anna).

-For God to open her mouth and touch her tongue to bring fourth speech, ability to express thoughts, we know she is often attentive trying to figure things out

-For Anna to have more opportunities to experience things that do captivate her: symphony, birds, motion (swinging, bicycling, swimming). 

For Neuro:

-That the newly placed shunt tube would effectively extract cerebral spinal fluid (not too much, not too little). That it remains well placed.

-For the Hypsarrhythmia that she got diagnosed with (again) would leave this instant. For wisdom in treating this, that it would not provoke her brain to unravel into greater problems

-That Anna would concentrate and learn amid the distraction of her brainwaves.

For Social Media and Fundraising:

-for God to bless our fundraising efforts and our gofundme account for intensive therapy and stem cell if the Lord wills.

-for wisdom to obey His lead that we would not do things in our own strength, or exacerbate those that love us

-for the Lord to be exalted on Anna’s public Facebook page, that He would use it as a vessel for show those watching that only God can save and heal to visit it you don't need a Facebook account www.facebook.com/annaunlimited

Our endurance is thanks to our hope in Jesus',

We Turned to Jesus

When people seem ripe for the Gospel I usually hear a hint of hardship in their life. God somehow uses the agent of hardship to return hearts to Him or to turn hearts to Him. Amos 4 shows God applying hardship to his chosen people: "I gave you absolutely nothing to eat in all your cities, a shortage of food in all your communities, yet you did not return to me." this pattern repeats:

I with held rain,yet you did not return to Me;
I struck you with blight and mildew, yet you did not return to Me;
I sent plagues,yet you did not return to Me;
I killed your young men with the sword, yet you did not return to Me;
I caused the stench of your camp to fill your nostrils,yet you did not return to Me;  (summary not a quote)...

Its hard to see God as loving in this chapter, He claims responsibility for afflicting misery for a specific reason -just one reason: so that His people would return to Him. I hear the Father crying out to His prodigal people "return". God does not want us to wander off. So to help, God gave us His Spirit, the Bible, other followers of Christ and prayer. 

Hardships make it apparent that God is willing to use pain as a bonding agent for our relationship to Him. Jesus being case and point as He took on our punishment for sin to make redemption and then relationship possible with God. He died most painfully, most lonely, most wrongly than anyone ever. that is why He can relate when we cry out to Him about our suffering. Jesus wants us when we suffer.  God's children have a Rock!!! so hardship for them should never be a slip-n-slide. 

In truth I say that it took weeping over brain surgery at 10PM on a Sunday night to realize (again) that God is more than enough. When I am not filled by His Word and His Spirit, I may still be saved but in my flesh I am restless and moody. I have been wandering a bit out of focus. My hardship with Anna brought me to the cross where again I lay down my moody and restless. God's will for my life is to turn to Him and know He is enough. The fullness of Christ brings us grace, hope, peace, wisdom.

Praise Him for His mercy and grace on Anna, afresh. We turned to Him, we responded to the hardship God placed in our life by running to Jesus. That's all we did. Now we need to do that in times of ease and blessing!!

Yesterday we out, discharged! New mercies at home this morning. Anna keeps on getting better, what mercy!
At the hospital we had many visitors to ease our attention, meet our needs, and comfort us. We had a dear friend who came and prayed with us as we awaited surgery, she dropped off her pack-n-play for Simon. Two of Anna's blind school teachers provided comic relief, two pastors being as friends, and one of our favorite special needs families was inpatient across the hallway from Anna during the whole stay. We are not alone through these trials. Thanks for the Facebook encouragements, the texts, and the many prayer offerings. Nothing is wasted, or taken for granted. Praise God.

"Perfect submission, all is at rest, I in my Savior am happy and blessed; watching and waiting looking above, filled with His goodness lost in His love." -hymn Blessed Assurance

Love Nic, Lindsey, Anna, and Simon

Passing Time During Suffering

I wonder how Job would have fared in his trials if he was left to himself. There were a few instances where isolation was evident, but God gave Job relationship during his grief. Not healthy or edifying "friends", they assumed so much upon Job and gave bad advice. They misunderstood much of what Job was going through, but they were there, walking with Job. God purposed this.

In the last chapter in Job. I love how God instructs Job's "friends" to turn to Job and ask him to pray for them so that God would not deal with them according to their folly. God could have dealt with Job's friends and shown them mercy any other way. Instead we have a scene of God making Job restore his friends. The choice was his. I imagine Job might not have wanted to pray for those guys or forgive them. But Job showed mercy by praying, then God showed mercy. What a strong example of purposeful prayer. In light of this restoration I find verse 11 striking.

 "Then came to him [Job] all his brothers and sisters and all who had known him before, and ate bread with him in his house. And they showed him sympathy and comforted him for all the evil that the Lord had brought upon him. And each of them gave him a piece of money and a ring of gold." Job 42:11

Those same "friends" had to be there, Job's relationship with his friends/counselors continues after the trial. I'm left with an image of a tested friendship, where offenses and sins were forgiven, everybody was humbled, and nobody was ready for what God had next for Job: a supernatural restoration!!! God was bringing His reward and favor upon Job. Job's "friends" must have been so amazed by God given their POV.

I hope everybody dwells on the book of Job when they are in the valley. I hope God brings relationship of all kinds to pass the time of suffering. We have the television nowadays but actors don't know your trials. I have had the company of prayer warriors the past two years. 

Notable Miracles

 

God showed up, healing is happening, His hand is evident: through provision, skill, gifting, medicine and the supernatural. God amazes me, these are the notable, still some i am leaving out.  

 

1. The timing of Anna's birth, it is very likely that Anna was going to die in the womb had we not gone to the hospital when we did, she was born so close to death.

2. A Neonatologist from Children's Hospital Chicago was doing a on call visit to a NICU-less hospital the day and time Anna was born there. Her expertise gave accurate evaluations and the best care from the start. 

3. Two days after birth, we were told that all the blood pressure medicine and supplements had been given and Anna could not stabilize on her own and if it continued this way that it could possibly lead to death. we prayed that night as we dropped her onto the alter before God like Issac. Overnight Anna responded.

4. Anna had much neurological damage and so the doctors warned us that Anna would not take a bottle. We had a nurse that felt differently, she practiced with Anna's tongue, and soon Anna grew into the ability to suck and swallow and gag. She was taking bottles by the time we were discharged. 

5. Seizures were common to Anna the first month of her life, but thanks to Phenobarbital we haven't evidenced any seizures from Anna since. Now is isn't on any seizure medicine.

6. The soft fontanelle along with frequent lumbar punctures was used of God to buy time for the brain surgery. Anna gained strength, blood clots cleared, and surgery went well. 

7. Anna can hear. With all of her senses compromised or eliminated its a wonder that her hearing is intact. It could have been wiped out with her vision, but it  wasn't. Perhaps that falls under the supernatural protection rather than conventional. Its so wonderful. 

8. The shunt Anna has, the precise positioning, the setting of pressure to open the valve, the threading, the surgery -it all went well no clogging, no malfunctions, no infections. To not have a shunt revision in an infant placed shunt is wonderfully rare. We haven't touched it.

9. Another family of Christ followers who have had the similar diagnosis for their child and can educate, listen, and counsel us. They came alongside us, stopped what they were doing, all within one month of Anna's birth. 

10. Financial provision for over a million dollars of medical care. Between our insurance and gifts   we were also able to extend my medical leave time so I didn't work for 6 weeks. We had medical debt up until this years tax return. We have paid in full all medical debt thus far for Anna! 

11. Federal Medical Provision under the Medicaid Life Limiting Waiver. This is a supplemental insurance to pay for many things the insurance won't like durable medical equipment, and for Lindsey to be Anna's nurse.

12. The medical exception that Anna is regarding her diagnosis of Hypsarrythmia but not showing infantile spasms. She remains seizure free and now thanks to Sabril is not showing Hypsarrythmia either. 

13. After nine months of being able to only indicate pain and suffering by restlessness and crying. We accepted that maybe this is how she will be.  Anna started to smile, what a delight, a huge cognitive milestone. Just in time for Christmas pictures. There hasn't been a day since where she hasn't smiled!

14. Another cognitive milestone that Anna meets is that she can sleep through the night. Many kids with her handicap do not sleep through the night. She may be hard to put down, but once she is sleeping she stays asleep! 

15. A Bronchoscopy revealed severe aspiration and trachea-malasia which makes Anna probable for lung infections regularly and needing to be on oxygen. Anna has never been hospitalized for a lung infection nor has she ever been on oxygen, her oxygen saturation levels mysteriously soar like a normal developing child. The G-Tube surgery has been an answer to prayer to minimize aspiration and safely administer liquids, medicine and food for weight gain.