DING DONG THE TUBE IS GONE, THE OLD PEG TUBE IS GONE!!!
The PEG Tube was removed last week! She is now eating and drinking through her mouth only. Even taking fish oil capsules, and you know how big those things are!
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The Loft Benefit was fantastic. $2500 was raised that night and the gospel message was shared with many! We want to thank the Steve and Liz Rinehart, the staff at The Loft, the best blues in town from a variety of bands and most of all the people who we knew and did not know that showed up and blessed our family with your fellowship and offerings. Part of the money went to pay for Rachael's Hyperbaric treatments and the other part will go to a much needed portable Hoyer lift. The Protable Hoyer will allow us to lift Rachael out of her chair when we are away from home for extended periods. Being that she is not at all ambulatory yet, we have to lift her out of her chair and bed. We are going to the 2012 Southeast Calvary Chapel Pastors Conference in Merritt Island. AS A FAMILY!! It will be the first time we have been able to all go together for more than a few hours and with the portable Hoyer, we are able to do it! Thank you to the Loft, the musicians and the people that helped to make this a great success. Daniel is home! It is great to have another guy around the house. Even the dog and cat are girls. Not that there is anything wrong with that. He is here for a month + then driving back to California.
The Lord blessed us greatly by allowing the Medicaid Waiver to come through. It allows money for assistance with Rachael, respite time for us as a family and a break for Nancy. She is amazing and has poured herself out for Rachael and the family for the past year. We are told to focus on things honorable and true. She is a living example. She finally gets a bit of a break. It has been a long year for my most excellent wife. God Bless you folks at APD for getting this through! Thank you Melissa! Thank you very much Geri! and Shelia!
Team Rachael as Rachael's Aunt Mary calls us all is expanding. John, a CNA at Heartland that was mentioned many blogs ago for his focus and attentiveness that was used to helped bring Rachael out of her coma, is a regular visitor now. The Gang from Shekinah Glory Home Care rock and are great sisters in Christ.
So how is Rachael doing??? Well, here is the rundown:
Speaking sentences
Learning to tap buttons on the iPad to make words
Praying at dinner for us.
Singing during Koinonia and worship in church
Chewing
Sipping through a straw
Joking around alot!
She is gaining more control of her right leg and right arm.
She is gaining some movement to her left extremities.
She is eating very well.
When I say she is speaking sentences, singing etc., you must understand that it takes many tries for her to allow us to understand what she is saying. She is patient with us. We see an upward trend with her speaking. Her movements are slow, stiff and deliberate. She still suffers pain quite regularly and we have been battling a large bed sore for weeks now. With the equipment we had, it was difficult to keep it from happening. We now have some new gear and hope that it will heal soon.
Rachael is verrry alert, quick to reply, and quick to thank us. The first sentence she said was "Thank you very much."
I need to get to bed but wanted to get this out to you so you know what is going on and to thank all involved in the Loft Benefit.
Rachael is resting prior to our departure. We have lots of folks coming and lots more to meet! Here is the map if you need it. The benefit starts at 4:00 pm.
Every morning Nancy will take Rachael through a workout regimen. It is painful but Rachael knows that it is what is going to keep her from contracture of her muscles. Today, she was able to control her left arm. We have not seen this before. As an added bonus, at the start of the video, she moves her right arm down to her side. We have much to be thankful for. We just received the medicaid waiver that will help with keeping Rachael in Rehab, her Insurance ceased support for rehab as she was not making big enough gains. This waiver will provide Nancy with help and the ability to get out of the house for several hours and even give Nancy, Hanna and myself 7 hours a week to take a break together while Rachael is watched by a professional health care worker. It is another new normal! We hope to see you at the benefit as the expenses don't stop the current needs as shared in the previous post.
You might wonder how anyone can endure the pain Rachael goes through, endure the extreme effort that it takes to care for her and tend to her. This verse may help to explain.
1 Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, 2 fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
How do we endure?:
"let us also lay aside every encumbrance" The word that is translated 'encumbrance' in this verse is the Greek word for tumor, a weight or burden. What heavy lumps are we carrying? If I am burdened then my eyes are on the burden and I am not looking where I am going. I am thinking about it, focused on it, spending time on it. It is a weight that slows me down. Do I spend a lot of time talking about or thinking about my burdens? Maybe it is something that is not so bad. It could be something culturally acceptable like spending untold hours on Facebook, watching TV or playing video games.
Can you maneuver as well through the Bible as you do through your video game?
Can you recite people and reports from the Bible as well as the latest episode of your favorite TV show?
Do you seek Facebook for the details on many other lives, diligently scrolling down your wall reading all the tidbits but call the book of Judges boring?
Encumbrances- we have to choose to put these things off in favor of His Kingdom. We need to regularly take a look at our day and make the majority of our time talking, teaching, reading, praying or mediating on His word.
Therefore be careful how you walk, not as unwise men but as wise, making the most of your time, because the days are evil. Ephesians 5:15-16
If today, this Thanksgiving Day, you were asked or you ask your believing spouse or your believing friend what they are finding in His word, will there be a solid answer? Or will there be a tightening of the stomach and a rushed babble of a response as they scurry for a fig leaf to cover the conviction?
“Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me. John 15:4
Abiding does not mean a visit. The branch can't break off for a bit, dally about as it wills and then connect back to the vine and bear fruit. It is constant abiding. If right now you are trying to justify the time in a day, the interruptions, the duties etc, stop! Rachael's care is a physically exhausting effort that moves from task to task throughout the day. Yet, each morning Nancy takes time and abides in His word. Throughout the day she muses on it, prays and discusses it. We talk or text about the blessings, what the Lord has revealed, what we are challenged by, all of it. It is intertwined in our daily discussions like a strand in a cord of three. Yes there is much to do but the abiding is intertwined throughout the day, not just during 'Jesus time' or only on Sunday. I encourage you to stop justifying, just abide. Do your best to abide. Let God's grace extend to you from His will and not your schedule.
"and the sin which so easily entangles us" Sin starts as a thought and turns into an action against God. (James 1:15, Genesis 3:6,) We are not Sin proof. As we have 'So great a cloud of witness' from the Old Testament that demonstrated saving faith, so much more are we surrounded by the traps leading to sin. The words "easily entangle" are busted out from the translation of the Greek word euperístatos-meaning to surround! From Hebrews 11 we have a cloud of witnesses that surround us from the reports of faith to demonstrate what faith can do in light of sin. On the inverse we have a physical and current world that tries to surround (euperistatos) us with the potential to sin.
For all that is in the world, the lust of the flesh and the lust of the eyes and the boastful pride of life, is not from the Father, but is from the world. 1 John 2:16
Read that "ALL that is in the world" Friends, we are surrounded by sin and the potential to sin, and so by the enemy, as were Elijah and Elisha:
Now when the attendant of the man of God had risen early and gone out, behold, an army with horses and chariots was circling the city. And his servant said to him, “Alas, my master! What shall we do?” 16 So he answered, “Do not fear, for those who are with us are more than those who are with them.” 17 Then Elisha prayed and said, “O LORD, I pray, open his eyes that he may see.” And the LORD opened the servant’s eyes and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha. 2 Kings 6:15-17
First Elisha only saw the surrounding enemy and felt the weight of fear of a huge army "Alas!" and then he sought quick counsel from 'the man of God' "What shall we do?" That is an excellent prayer to pray when you are surrounded 'God, what shall I do?' Elijah's prayer opened Elisha's eyes to the spiritual realm and just who was surrounding whom. If you are adopted by God, being that if you confess with your mouth Jesus as Lord, and believe in your heart that God raised Him from the dead, you will be saved (Romans 10:9), you have that help available to you to lay aside the sin and the encumbrance. By being saved you have "Chariots of Fire" to help you battle the sin that surrounds you. If you believe. Hebrews 11:1 lets us know that we do not need Elisha's eyes to see for Now faith is the assurance of things hoped for, the conviction of things not seen. I don't need to see chariots of fire to know they are there. Faith opens the eyes of my heart to know.
Yet, there are sins that can become such a weight to us. We need to realize that our sin, no matter how bad we think it is, has been taken care of at the cross. In the days after Christ, the Jewish Priests stilled carried out the Mosaic Law of sacrifices for sin.
By this will we have been sanctified through the offering of the body of Jesus Christ once for all. 11 Every priest stands daily ministering and offering time after time the same sacrifices, which can never take away sins; 12 but He, having offered one sacrifice for sins for all time, SAT DOWN AT THE RIGHT HAND OF GOD, 13 waiting from that time onward UNTIL HIS ENEMIES BE MADE A FOOTSTOOL FOR HIS FEET. Hebrews 10:10-13
Once I realize my sin, I need to confess it to the Lord, and repent, or turn away which if sincere are pretty much simultaneous. I may need to make amends with another as part of my repentance but as far as Jesus is concerned He forgave me at the Cross. When I am encumbered or have unrepentant sin, it gets in the way of my relationship with the Lord. I am still saved if my confession of Christ was true, but until I put off those things that are in the way or holding me down by their weight, I am not able to stay focused on where my focus needs to be. We need to seek holiness in our lives and keep our minds and hearts from sin and proximity to sin by abiding in Christ.
Therefore, prepare your minds for action, keep sober in spirit, fix your hope completely on the grace to be brought to you at the revelation of Jesus Christ. 14 As obedient children, do not be conformed to the former lusts which were yours in your ignorance, 1 Pe 1:13–16 15 but like the Holy One who called you, be holy yourselves also in all your behavior; 16 because it is written, “YOU SHALL BE HOLY, FOR I AM HOLY.”
and in so doing we will apply the precepts of our Lord as given to us in His word, the Bible.
By this we know that we have come to know Him, if we keep His commandments. The one who says, “I have come to know Him,” and does not keep His commandments, is a liar, and the truth is not in him; John 2:3-4
We need to choose to do abide. When we mess up, we do not need to carry the guilt. Jesus died once for all. That sin was foreseen by Jesus and He died for it. Done. If we have unrepentant or habitual sin in our lives or are carrying around these tumors of troubles or traps, we are not in a tight relationship with our Lord and we are not going to endure, we are not abiding.
By putting off the encumbrances and the sin, we can endure! We are free from the weight of the encumbrance as we have help and sin because it was already dealt with at the cross! We are free indeed! With our nose in His word, we will develop a stronger relationship, a tighter bond and more understanding of his simple and pure nature. The fruit of abiding? Obedience. If I am abiding, I don't have to strive for holiness, it happens. Holiness Happens. We will have help when we are surrounded in this world by the enemy. We have one greater than the enemy with us.
You are from God, little children, and have overcome them; because greater is He who is in you than he who is in the world. 1 John 4:4
We are surrounded by the witnesses of past and the witness of the Holy Spirit in us to the fact that if we have faith in Christ, we are going to endure. Endure for what? For the joy set before us in being in Glory with our Lord:
fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
Jesus, the perfect example of faith in action. He endured the terrible suffering, and though He is God, He felt every shard of the the whip, every plucked hair from His beard, every thorn stabbing His skull and every nail in his body. He did so for the joy set before Him. We have His example. We can endure because up the not to distant road, is Christ! Live and in person and eternity with Him. So we have these simple tidbits to help us get through the tough times and endure:
Remember examples of faith and the results of that faith. We are surrounded by those reports.
Know that you are surrounded by the options of encumbrances and sin in this world vs. remembering what faith in Christ can do.
Choose to abide in Christ.
Your sin was forgiven at the cross, don't carry around guilt, repent and continue the race.
Keep your eyes fixed on Christ.
In the end it is stated so simply by Jesus
“But seek first His kingdom and His righteousness, and all these things will be added to you. Matthew 6:33
As confirmation to what I was doing, sitting here writing out what I considered to be a word from the Lord, Nancy said after dealing with several issues today, "the only reason I can get through this is I know that one day I will be with Him in heaven."
That is how you endure.
Abide, fix your eyes on Jesus and you will endure.
I am so thankful for what Jesus did for us on the cross. Though there is so much to be thankful for this day. It is all wrapped up in Him. How wonderful that we have such a great joy set before us as to be in the presence, forever, with the author of our faith!
Some people have asked what the gathering at the Loft Restaurant is for We are trying to raise funds to continue her Hyperbaric treatments since they are showing improvements in both speech and movement. These treatments are not covered by insurance and cost $5000.00 per 20 session increments. She has already had 40 Treatments and we are hoping for 40 more. In addition to this, the gas to get to Palm Harbor which is 1 1/2 hours away and the only location that would accept Rachael, costs $550.00 per month. Rachael's insurance no longer pays for all the therapy she needs because she was not making functional progress at the pace the insurance requires. Burt and I do most of her therapy at home. I spend up to 2 hours a day doing her therapy with her in bed. It is difficult and not as effective as having a therapy table which costs around $1000.00. The last need that we have is a portable Hoyer lift if we need to lift her to tend to her needs when we are not at home. Currently, we can only take her on short jaunts to the doctor or church. A portable Hoyer costs about $1300.00. It is our hope that the funds raised will go towards these expenses. Thank you very much and we hope to see you there!!
From Nancy's Sister Mary:
Dear Rachael, I am so happy to see this fund raising benefit come together that will indeed benefit you, hopefully in many, many ways. Thanks so very much to everyone who is putting in their time and effort to make this happen, as this is so important to Rachael’s recovery. Nancy and Burt have worked very hard to get Rachael access to treatments and therapies that are truly working in allowing her to progress in her healing, most of which are either not covered by insurance or only covered for a limited amount. Rachael knows these things are helping her gain more function with speech and motor control and she is eager to continue the hyperbaric oxygen treatments and works very hard at her therapy sessions. So it is essential that these treatments and therapies remain available and accessible to her. I encourage all who read this to pass the benefit date and place information on to family, friends and co-workers and invite them all to come participate in this event as part of TEAM RACHAEL! With your support, Rachael can continue to have the best opportunity for a significant recovery of her speech and motor function If you cannot participate and contribute as part of the benefit on Sunday (or even if you can), you can also make a difference in helping Rachael recover by making a contribution to the special needs trust that is in place for her. It is an irrevocable trust and all money in it goes directly to Rachael’s care and treatment. To donate to the trust, please make checks out as shown: Rachel Kaye Hinkle Irrevocable Special Needs Trust. With much love and gratitude to all for your compassion and support of Rachael and her family, Aunt Mary GO TEAM RACHAEL!!
The Rinehart family has worked hard and there will be a great benefit for Rachael on the 27th of November. To those of you that are vising this site for the first time, scroll to the bottom of the posts to read what has been happening over the past year.
Lights in a Blue World: For you folks that have been visiting this site, this is a great ministry opportunity! There are going to be a lot of people at The Loft that do not know our Lord, some may have a knowledge of Him or some may not care at all! Time to take the church to the people in a blessed way! This is a B I G event. Remember to whom Jesus taught. We can be lights in a blue world! We are all going, Hanna too. Mark the date - November 27th!
Just a quick note that last night Rachael was able to speak clearly, all be it very slowly and deliberately, I LOVE YOU! and then I LOVE YOU HANNA! That 'V' Sound has been hard for her but she got it. She is also closing her mouth more before speaking, a major necessity for proper enunciation. At Church on Sunday, with assistance, she was able to wipe her mouth!
More later, but God is doing some neat healing over these past few days!
Last year our brothers and sisters at Calvary Chapel School felt compelled to suggest Rachael's story to Extreme Home Makeover. At the time we were half heatedly enthusiastic about the idea, mainly due to the incredible weight of Rachael's care and rehab at the time. We also felt that it was striving for us to be involved in the application process. All things prayerfully considered, we ended up letting the nearly completed application sit on the shelf under a mound of bills and statements.
Jenan Wood, Mary Kay Cosmetics Sales Director and proud mom, approached me about contacting EMHE last year as well. She was very enthusiastic about it. Once again, we steered away from the opportunity.
A few months ago Deb White and Mandy Yoder approached us about filling out an app for the show. With a sense of unworthiness and hesitation towards putting it all together, we made a video with Mandy and Deb and I think we still have Deb's video camera here (Deb, we will bring it to church. )
Part of it may be reliving the whole accident, part of it is that the story is far from finished, part of it the investment of time for something that felt contrived. A big part of the resistance was feeling that due to you guys with your blessings and prayer, there just seemed to be others in higher need.
Yet, Rachael's impact just seems to keep growing. At least once or twice a week God is glorified through Rachael's story directly by Hanna, Daniel, Nancy or myself. A score of others that we do not even know are impacted when they hear of the story. I have met people that after a few minutes into a conversation exclaim: "That is YOUR daughter that we have been praying for?" or they tell Rachael's story to me, not realizing that she is my step daughter.
It has so far been a devastating, thrilling, sorrowful, blessed, frustrating, joyous, raucous, peaceful, tragic, Christ centered, self focused season in our lives. You got it, a strange ride. All said and done, to the day, Nancy and I are in awe of what God has done through Rachael for everyone touched by her story, including us.
Now, we are starting to function in the context of what has been brought to us. Sustained as always by our Lord, we are getting the joy and peace. We are getting into our new normal!
With that, another text from Christine Sullivan at Calvary Chapel School containing a forward of a text from Jenan Wood revisiting the idea of submitting us for the show and a green light from God, we decided to move ahead with the idea.
With only a day left for submission of entries, Christine entered our info on the website. What a grand opportunity to share Rachael's story! We will be able to share how God's hand moves through so many lives and offer hope and knowledge for others with Brain Injury family members. I am sure there are thousands of entries. Yes our house needs help. Yes it is way too tight for moving Rachael around. Yes it is sore backs and arms and Ibuprofen BEFORE coffee for Nancy and I after tasks associated with Rachael's care. Yes the walls are thin and Rachael can be heard, on occasion, outside by passers by and neighbors. Rachael's wheel chair is just shy the width of the hallway. It is comical to see my 210lb 5'9" frame caught by the belt loop on the bathroom door handle as I try to squeeze around the chair to fit her for the lift to bed. Nancy, much thinner and more agile than myself meanders her way like the rubber guy super hero from Fantastic Four around, through or under to do the same. Moving Rachael around the house is a constant bumping of her arms or legs and us doing our best not to hit a door frame, a wall, a corner of a table or chair or some other obstacle. That is what happens with someone on complete dependent care. Everything is an obstacle as it was designed for completely mobile people.
So we are going with it. We need to shoot a video and do a few other things to prepare. We are just one story in thousands but if we do get on the show one thing is very certain, God will be glorified.
Here is a link where you can join abc.com and post something about Rachael to their message center. Please always end your messages with a link to http://www.lovetorachael.org. The more chatter on their board the better. Also if you know of anyone connected with the production, feel free to email them as well. What a great thing it would be for others who are experiencing a life with a brain injured loved one to see this story of hope and healing. Here is the abc.com link for Extreme Makeover Home Edition's message board:
Our friends Steve and Liz Rinehart own The Loft Ristobar in Sarasota. They are having a Blues Benefit for Rachael late afternoon and early evening on November 27th. Rachael's story and thus the testimony of our Lord is going to be shared with a group consisting of many non-believers. This is a new direction for us on this journey and we will be providing you with more information as the time approaches.
There is another event that I have heard rumors of just today and if it happens we will have the info here.
We look at all these as opportunities to share Christ and the power of a living God with others.
1 Bless the LORD, O my soul, and all that is within me, bless his holy name! 2 Bless the LORD, O my soul, and forget not all his benefits, 3 who forgives all your iniquity, who heals all your diseases, ESV
So it seems that the Lord is moving us into new area's with our Medical Missionary, Rachael. The mission continues and we praise our holy God for all he has done.
[caption id="attachment_574" align="alignleft" width="200" caption="Rachael at Mine and Nancy's wedding"][/caption]
There has been so much change going on at this house I thought it was a call back to the 2008 elections. First off: Friday, in just a few minutes, yes, October 7, will be Rachael’s 23rd Birthday! There is much to celebrate. I will give it to you by the bullets as it is late and we all need to get up early. Nancy is driving Rachael to and from her Hyperbaric Treatments 1 hour 30 minutes each way 5 days a week as we were refused services locally. Anyone reading this must understand, these treatments WORK! I was quite skeptical. That said, here is what is up:
18 Moses said, “Show me your glory, I pray.” 19 And he said, “I will make all my goodness pass before you, and will proclaim before you the name, ‘The Lord’; and I will be gracious to whom I will be gracious, and will show mercy on whom I will show mercy. 20 But,” he said, “you cannot see my face; for no one shall see me and live.” [1]
[caption id="attachment_577" align="alignleft" width="300" caption="A precious moment with sisters."][/caption]
Healing – His Glory Revealed!
Tonight she gave us a clear and defined ‘f’ sound on the suffix of the word ‘off’. She has not been able to use her lips and tongue together to form that sound.
She is moving a much contracted left wrist up and down a few degrees. Prior to today she has not been able to do this at all.
She is keeping her knees straight up and not leaning to the ‘tone’ to the right.
She is able to arch her back, shift her torso and move her neck quite far to the left. In the past her chin was constantly pressed to her right shoulder. For months.
We are able to help her move her arms much easier. It took two of us to raise her arms up just to bathe her. One person could do it but it was killer on the back and arms of the care giver. Not so anymore!
When turning her in bed she is starting to assist. She is also able to get herself flat on her back by moving her arm and shifting her weight once she has been on her side.
Her ‘Yes’ and ‘No’ are quite clear when she is alert and not in severe pain.
She is making decisions on where she wants to sit, when she is hungry and if she wants to go outside for a stroll or remain inside to rest and if she want s pain meds or not.
[caption id="attachment_583" align="alignright" width="300" caption="Cuddles "Will someone scratch me please?""][/caption]
She is great company and is filled with Joy and laughter when not in pain.
That said, at times of severe contractions, she still laughs at some absurdity.
Her cognition and grasp of abstract thoughts and responses to them are incredible.
She gets a joke
She says Amen
She Prays, though we cannot yet understand her words, she prays!
She is eating
She is drinking
She is starting to raise her legs when we move her.
She raises her head when her hair is being washed or a need arises to get to the back of her head.
She imitates what she sees, when she sees. There are times when she cannot see.
She knows that October 7th is her Birthday
She says I Love You every night.
She has short and long term memory.
She Dreams
She sleeps well without waking up 3 or 4 times a night.
She is willing to work very hard to get well and has communicated this to us.
She is able to decide to take certain ‘as needed’ meds for pain and comfort. She does not always take them during times of discomfort.
She is center focused with her eyes a large part of the day.
She LOVES to go to church.
Two weeks ago, when Ray White was playing God of This City, she raised her right hand in praise and mouthed what she could for the words. That was awesome.
She listens to the sermons and responds quite appropriately
She can spell.
She drinks through a straw and sippy cup.
Her latest EEG showed not seizure activity.
She is off all drugs but her muscle relaxers, ibuprofen, and an aid to cut back on possible memory or confusion issues. We don’t think she needs it but we are being obedient to the doctors God has placed in our path. She was once on 20 drugs. She is now on 6.
Reality Checks: His Future Glory!
Rachael cannot sit up without support or walk at all.
She is ‘bed ridden’
She has a vocabulary of about 10 words that are not yet clear.
Her legs are in constant painful contraction, knees bent up and never flat out.
Her feet are turned inward at a 90 degree angles. Try it.
Her left hand is normal bent or curled down with contractions in her forearm muscles. The fingers are contracted and cannot open all the way.
Her right hand is usually a closed fist that will break the skin of her palm with its force if left unabated. It is painful for it to be opened.
Her right forearm often contracts up when she is stressed causing her to raise her arm up.
Her left arm pulls to the right, causing issues with her feeding tube.
Her left side appears to have a much higher tactile sensitivity and lower functionality. Putting socks on her feet or touching her feet is actually painful to her.
She wakes up in pain, is in pain all day and ends her night in pain. Ever wake up from a Charlie horse in the middle of the night? That is common for Rachael with an uncountable frequency each day and night.
The food she eats is ground in a food processor. She cannot chew well yet.
Caring for her is a monumental self denying task. Nancy handles the majority of it. I work during the day.
She twitches uncontrollably at random times.
In the near future, Rachael is going to require daily focused rehab. We are hoping that it will be covered by Insurance. We are not sure it will. She is going to need this rehab to regain speech and whatever physical movement God will give her. Please pray for any of the items under ‘Reality Check’ and give praise for those items under ‘Healing’. Our Lord continues to use Rachael as a Medical Missionary, offering many opportunities to share Christ with others. There is more news coming but it deserves its own post. This weekend I hope to have all the details. God bless you all for your prayers and thank you for your kind selfless efforts. We stand amazed at what God is doing. As far as Nancy and I go, we looked across Rachael’s bed at each other last week after changing her and realized that we are starting to function normally in this very abnormal situation. It was a good moment! Pray for Nancy to sustain and get her allotted daily bread of faith for strength. Pray for me to not be angry and to control my tongue from words spoken harshly. Pray Hanna for her continued growth in Christ and school, Daniel for success and leading at Bible College. Pray for Cuddles our cat and Joy our dog not to fight and for Joy to learn that our closet and under Rachael’s bed are not appropriate places to go to the bathroom. Just kidding on praying for that …but wait, pray for all things…so go ahead. Thank you God for your mercies and for giving all of us a way out of the most difficult of struggles. Thank you for paying the price so that one day we can see your glory, as Moses asked. Wow, how amazing it will be to see what perfect goodness looks like!
[1]The Holy Bible : New Revised Standard Version. 1989 (Ex 33:17–20). Nashville: Thomas Nelson Publishers.
This is from Nancy's Journaling that she edited for this blog:
Oswald Chambers had a great word on September 3rd entitled Pouring Out the Water of Satisfaction
He basically says that when we are blessed, we are not to horde those blessings but to pour them back out to the Lord which to me means being thankful and then blessing others
Whoever believes in me, as the Scripture has said, ‘Out of his heart will flow rivers of living water.’ ” ESV
As I have struggled this week with self-pity and anger over an existence that I would never have chosen for myself or my daughter, I can't help but see God's blessings being poured out on us from all over. Here are a few from just this week...
Rachael has been (finally!) headache free for 1 week now. Just when I was pressuring the doctors to remove the Baclofen pump that has caused nothing but complications, her leak seems to have healed up as her symptoms have subsided. This means she does not have to endure another surgery right now and we can keep this pain relieving pump in case she needs it in the future if the hyperbaric treatments do not reduce her muscle spasticity.
Monday, Deb White and Mandy Yoder surprised me with a massage from a therapist here in town. They watched my girls, cleaned house, cooked dinner and organized our lanai. Wow!
I was also given a massage gift from the Pastor Chris and Christen Thostenson with a therapist coming to our house. My back and hands are doing much better, thank you!
Mandy also sent someone over with a beautiful couch that they were getting rid of. It replaces our broken one. We love it!
Rachael had 2 tests this week, an EEG and an MRI. Praise God I was able to take her to them (always in Sarasota) in our own wheelchair van that was a miracle story in itself. Burt was able to meet us at both tests to keep Rachael calm and coach her through as the tests for her are traumatic. When Burt arrived back at his office at Stuart Signs, he found that several of his co-workers had gone into an office and prayed for Rachael to get through her MRI. She did great!
Thursday our Pastor and his wife, Bob and Barb Wulfing, dropped their busy schedules to meet with us for counseling through some difficult emotional struggles. Our marriage is a target for the enemy who desires to divide us. Thank you all for your prayers to keep us working together as one flesh. The pain that we both feel in regard to Rachael's condition and especially her suffering is still very real and present and is only through the power of our Lord Jesus Christ that we can stand together through this trial. All glory be to HIM for it!
On Friday my sister-in-law Yvonne and my brother Charlie came to watch Rachael which allowed me to go grocery shopping and run errands. They folded laundry and organized book shelves while I was gone. Thank you guys. We love you!
Carol my sister stopped by that night to bring Rachael a frappuccino and to give Burt and I a break for us to go out...
That same night Tom and Darryl Weaver brought us a wonderful Mexican meal (no need to go out!) and stayed to watch the movie The Grace Card. We did not get out but instead stayed in for a wonderful evening with friends and family that God has blessed us with.
Earlier that day we were hugely blessed by some stranger cutting and grooming our front yard. Thanks Bob and Barb for the lawn care blessing (especially now that Daniel is gone!)
Saturday morning we were blessed by our wonderful physical therapist, Lucille, who also loves the Lord and brings such a gentle sweet spirit when she comes to stretch out Rachael's legs and arms. We made sure we told her so that morning.
So you can see we are surrounded by multiple blessings. We only hope and pray that we can pour out the blessings by thanking Him for His faithfulness and encouraging His saints to stand strong and not grow weary with great trust that all things are working for His Glory.
Rachael has not been fed via her PEG tube for 4 days! She has been taking food via her mouth! Tonight she ate the most I have seen her eat to date. A H U G E helping of Lasagna! She is drinking by sipping so we still hydrate her and deliver the meds via the tube. We are trying to get her to take meds by mouth. The bitter taste is tough for her to handle.
There has been allot going on and I have little time as it is late so here are the bullet points.
We have a born again, God Fearin' Bible living Neurologist on the team! So:
Rachael gets an EEG Wed (Aug 31).
Thursday she gets an MRI for both her brain and for the pump catheter entry point.
The headaches from the leak stopped 2 days ago. Until today she has been more comfortable.
Today she was not in a great mood at all. She was groggy, had some real tough times with contractions and could not communicate well.
We found that she has a fever of 99 and has some sensitivity around the PEG tube entry point.
We are waiting until tomorrow to see if the fever remains.
She is doing some neat things physically. She has been turning her head to the left and holding it there for extended periods. She is also able to push back and arch her back well. She is stretching her legs some.
We played hookey from church on Sunday and lounged about. Saturday was a very hard day for Rachael and us. On Sunday night we all went out to eat at Applebees with gift certificates we got from the families at school last year. First time dining out with Rachael since January!
Nancy and I have been digging into Ecclesiastes and have been having some real fun reading it. Sometimes it takes a Harem to make a man realize how good one Godly wife is! Today, Oswald Chambers reminded us that we need to stay in the light as we continue on this journey with Rachael. We have had some deep talks as of late regarding man's intervention in life and death matters, questioning why it all has to be so hard. Tough stuff. We know that no matter what, we need to look to our Lord, our Savior who reached down into this fallen mire and offers to pluck us out of the enemies grip.
We know that
12 Therefore let anyone who thinks that he stands take heed lest he fall. 13 No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.
The Holy Bible : English standard version. 2001 (1 Co 10:12–13). Wheaton: Standard Bible Society.
and there is the temptation to doubt, to see only the worst, to give up, to be angry, so many things. Yet, through all of this our Lord has given us a way out. His Word! It is living and active and sharper than a two edged sword or a scalpel. It cuts and cuts deep to carve us into the likeness that Christ desires for us. The more we move onward in this journey, the more we realize that all is vanity and chasing after the wind. All that matters is that solid relationship with our Lord Jesus. Not just knowing about Him or believing that He was what He said He was, but letting Him lead our lives. Submitting to God and getting out of the way of what He has going in our lives. If I look at what we are getting out of this spiritually or what Rachael is getting out of this or what effort we have to extend or what trials Rachael has to go through, we are missing the mark. It is not about Rachael. Not about Nancy, Not about Daniel or Hanna or all of you and what any one of us is getting out of this trial turned blessings. It is not about US. It is all about Jesus Christ. Keeping that focus in sight and losing any glance in the mirror, any self edification, permits the joy of our Lord to work through us. Deny yourself. How many times do we have to hear this? Check out the Christian Living section and see how many books about You and Your well being there are. It is all vanity, soap bubbles, here today and gone. Truly it is only about Him! What a great abandonment is offered us by His blood!
Please pray that the MRI blows the doctors minds! That the EEG is unexplainable and that the leak just seemed to heal 'on its own'. We need a good day of witnessing! Pray that her fever is nothing or better yet that we remain tight to the light to be given discernment on what to do.
If you know of anyone who is on the Florida Medicaid Waiver program or who is waiting to get on the Medicaid Waiver program, Please have them contact me. This would be individuals that are in critical need of medical assistance in the home. If you know of someone in a long term recovery or under need of regular nursing care in home, then ask if they are on the program. If they are, please have them contact me or contact me on their behalf.
I am not on Facebook, if you could Facebook the daylights out of this post I would appreciate it.
The Lord provided a van! We will all be going to church together on Sundays! The mother-in-law of a co-worker and brother in Christ was selling her Toyota Sienna LE wheel chair van that she used to transport her husband. Vicki Sauder's husband Steven had suffered from a TBI for 17 years. The Lord called him home in May and Vicki needed to sell her van. She had need of it until the day my manager at work, Robert Smith, sent and email to my co-workers that we needed a van. It was then that her son-in-law, Tim Crowe, came up to me and informed me that the van was available. We got it with some money from donations from Family members and friends in Atlanta and the Carolines that totaled almost to the dollar what we needed to get the van! It only had 40,000 miles on it! So, we have mobility. We went for a ride last night to the Jetties and to Bob's Ice Cream. Thank you Jesus for supplying this Van! Thank you Vicki for being a new light in our lives.
Tired I am as I write this and Christine's post below reminded me to share that Rachael went to the Calvary Chapel School orientation the other night. Many kids and parents that have been praying for Rachael were able to see how far she has come. I was very worried that the stimulation would be too much for her and at one point I stretched my neck around someone's shoulder to catch a glimpse of her as she was surrounded by well wishers. She was beaming!! She was saying "hi" to folks and just loving every minute of it. She laughed at Coach Green's "song" and just had a blast. Eventually Nancy went off to the overflow room with Rachael and several teachers popped in to say hello. It was a great night indeed and wonderful fellowship. My prayers are with Mr. Beauchamp as he takes the reigns of the 3rd Grade class. I am thrilled at what he will come to know!
Rachael continues to improve by the small increments of brain injury recovery. She is doing much better at swallowing 'thin' liquids like water, juice and skim milk. We expect her to be able to take thin liquids regularly within a month. That is our hope. Once she is taking the liquids, we can get rid of the PEG tube She is eating full adult portions of food prepared in a fashion that she can take in.
Please pray for Nancy to be sustained through the days. Daniel is leaving on Monday for Calvary Chapel Bible College and it is going to be very difficult for all of us but especially her. She could use a few texts to lift her spirits that day. It is hard for her to answer the phone or be on the phone for very long during the days but a text message to her would be great. 941-323-6101
"But *seek first *His kingdom and His righteousness, and all these things will be *added to you.
On Friday, Nancy and I were able to go to Lynette Haskins ?? birthday party at Kevin and Christine Sullivan's house. It has been a long time since we have been able so sit and enjoy an evening socializing with friends. Thanks to Tammy Smith for hanging with Rachael, and to her husband Jeff for setting us up with a firm mattress that has already proven to greatly help Nancy's aching back. Rachael's care has been really hard on Nancy's back and that mattress has made a huge difference. Thanks also to Hanna for giving up a night that she could have spent with friends to remain home with our guests. Hanna rocks! Have I said that before? She had so much fun with the Ericka, Samuel and Sarah! So, she stayed home and made three new friends.
Today was a big day for Rachael. Today was her first day back to church! We rented a van from Wheel Chair vans for 120/day. Yes that is much but it was great to get her into church. Plus we got to try out a van and get a feel for what she might need if one comes comfortably our way. I just wished Hertz had wheelchair vans!
It was not an easy morning getting her ready but we knew the enemy would be at play in this. We all got through it and got Rachael into the van. She was calm and happy on the ride. Once we got to church, our friend Ian opened the door to a brand new day. We strolled passed the kids in Sunday school, waved Hanna to follow us through the first set of doors to the hallway just before entering the sanctuary. It was a very emotional time. We paused there in the hallway listening to Ray White singing "Oh No You Never Let Go.." we all burst out in unexpected and overwhelming tears. We quickly gave up on stemming the tears, proceeding through the 2nd door entering the back of the sanctuary. We rejoiced as the worship hit us with an embrace that is beyond comprehension. Rachael listened intently to the sermon and at the end we responded to the call upfront from our shepherd and pastor, Bob Wulfing to anoint Rachael with oil as instructed in the scriptures and tearfully, he prayed for her. He was taken over by the emotion as well but the Lord gave him the words to speak. Pastor Bob was here within moments of being called the night of the accident. He was here during the hellish mayhem. He was with us very early on at the Venice ICU. Today our beloved Pastor got to pray with one of his injured sheep in church after many months of keeping the hope that she would one day be able to return. Rachael responded with such tears of release and joy. She was in no pain, just crying for the many months of trials that she has so far overcome. It was a milestone for all of us.
Afterward there was great fellowship. People were gracious in not crowding Rachael too much, keeping the fun up and stimulus low. She had a blast. She blessed so many in church today, so many that have prayed for so long. One by one, folks passed by and greeted her.
After church we returned to the house, rested then went back this afternoon for Daniel's send off party at 4. There were scores of people there to wish him well. Rachael was present there too. Daniel was in the fellowship hall with about 80 or so people eating ice cream and drinking great coffee from Black Gold Roasters. After a while she became overstimulated by all the talk and we removed her to the sanctuary. What a very special time it was! In the sanctuary Ray White came up and asked if it would be ok if he played quietly for Rachael that it might help her to calm down. At first my over protective flesh kicked in and I said "any stimulation is all the same to her" then after a brief word with the Lord I gave Rachael the option. She said she wanted Ray to play. It was fantastic. There were about 12 or so of us present. Rachael's little cousins, two of her uncles, two of her aunts (her Aunt Carol was the Martha of the day in the kitchen, THANKS CAROL!) Deb and Becca white, Barb Wulfing and a few others. It was a time of quiet fellowship and sweet music. Rachael calmed down almost immediately. Once she did, the smiles came out and her cousins all gathered round her. All of this just a natural, no pretense moment. Rachael's friend and ours, Jasmine, came buy just after returning from a missions trip to Panama and blessed us all with her presence. Ray ushered in a rare moment of sweet fellowship and calm. Thanks Ray!
So that was the day. A very big day. Rachael got to go back to church!
Sadly, her graduation was yesterday at Word Of Life but the 2 hour up and back ride would have been too much for her at this time and the support she requires can not be stretched for such a length of time. I know I speak for Rachael that she wants to thank her class for so much prayer and that it continues. Those prayers availed much.
Rachael is flipping us out as she is moving various body parts quite voluntarily and more frequently as her mind finds new pathways. She has raised her head off her pillow several times now when she stretches. She is pushing her legs out more to stretch and moving her arms more deliberately.
I am including a few precious pics of recent events.
mmmmm-good!
[caption id="attachment_536" align="alignleft" width="900" caption="Rachael and Aunt Lisa share a laugh after church."][/caption]
[caption id="attachment_537" align="alignleft" width="900" caption="After the music that brought her peace, Ray posed for a shot with Rachael."][/caption]
Just a quick note to share that Rachael began drinking from a sip cup last night! Folks, Jesus continues to amaze us through the work he is doing in Rachael. Please pray for her comfort during the headaches as doctors wait to see if her spinal fluid leak heals without surgery. We are also praying for a wheelchair van.
Quick note - Rachael passed the swallow test with Flying Colors!!!!!!!!!!!!!!!!!!! This is huge. Now rehab can work on her chewing and eating and the end of the PEG tube is in sight!!! Praise be to God for answered prayer! Jesus Rocks !! Rachael Rocks and she can eat all the Cheetos she wants!
Be on the lookout for a beautiful girl with big brown eyes, brown hair, a smile that would light up a black hole who has yellow dye #2 on her teeth. Rachael ate two Cheetos today. She bit and chewed! She also enjoyed watermelon. Nancy has been working with her on her eating to prepare her for the big swallow test tomorrow. If she passes the test, the speech therapist will have the green light to start focusing on Rachael's eating. All this eating and chewing is hands-over-ear-lalala to a speech therapist (a nod to Susan at Heartland!). So with the passing of the test, the pros can do their thing. She has been eating larger portions of the mashed meals that Nancy is preparing. One other note, we believe she drank through a straw today as well! Nancy will be working with her on that after the test. She was able to suck the Coke up the straw, we just are not yet sure how much she drank.
Regarding my post rant on SMH and the Wound Center in Venice, I have been lovingly rebuked by a brother in Christ for my remarks and in the light of the word of my Lord, I was wrong. A few verses that were shared:
Colossians 4:5–6 (NASB95)
5 Conduct yourselves with wisdom toward outsiders, making the most of the opportunity. 6 Let your speech always be with grace, as though seasoned with salt, so that you will know how you should respond to each person.
Ephesians 4:26 (NASB95)
26 Be angry, and yet do not sin; do not let the sun go down on your anger,
Proverbs 15:1 (NASB95)
1A gentle answer turns away wrath, But a harsh word stirs up anger.
Romans 12:21 (NASB95)
21 Do not be overcome by evil, but overcome evil with good.
Proverbs 25:11 (NASB95)
11Like apples of gold in settings of silver Is a word spoken in right circumstances.
1 Corinthians 4:7 (NASB95)
7 For who regards you as superior? What do you have that you did not receive? And if you did receive it, why do you boast as if you had not received it? So, in light of the light within (John 1:4-5) I need to ask forgiveness to all who read the previous post. Quite simply I was a bad witness to the extreme grace my Lord has shown me and every believer. There is no excuse. I have removed the offensive wording from the post.
Keep prayers up for Rachael's test tomorrow and Nancy as she travels with her. Remember to please let us know if you have a line on a wheelchair van from someone local. We are seeking to purchase one if we can find one that fits into our budget.
Rachael is doing fine. She is putting up with her headaches. They are strong at times. She is on her back and we are not moving her around much as the doctors have decided to let her rest for a week before moving onto a next step in resolve of the pump problems.
Nancy is working on finding Hyperbaric treatments for Rachael. Discussed on previous posts, the Hyperbaric Treatments have shown in studies and in reports to assist patients suffering from various diseases and damage associated with the brain. There are basically two options one is 95% oxygen and the other is 100%. That 5% means allot. To have a 95% oxygen treatment does not require a doctor to be present. To get the 100% does. Now here is the problem. 95% costs in the 150 range. The 100% is a whole higher as a doctor has to be consulted and present. Nancy, Rachael and Nancy's sister Mary will be traveling to Palm Harbor for the treatments in 2 weeks. In order to get to Palm Harbor or Naples, we will need to get a wheelchair van. If anyone reading this has any leads on a wheelchair van, please contact me at 941-545-0713. We are going to rent one but we are going to have to raise money to get one. So if you know of one available let us know.
There exists a great opportunity in this area for resources focused on Traumatic Brain Injuries and Anoxic Brain Injuries. The focus right now is on the big money, heart, stroke and bones. Looking at our demographics this makes great sense. Yet the protocols for the initial treatment for heart attack or stroke differ from TBI, closed trauma or anoxic brain injuries. Our hope is to see a brain trauma and rehab center here one day.
Monday, Rachael will be going to one of 3 doctors involved in the pump. She has one doctor managing her pump, one doctor investigating the surgical options and another doctor managing the medications and overall direction of medicinal therapy. Some may trust in horses, some in chariots, we will trust in the name of our Lord (I hear Nancy singing this in the other room with Rachael.) We will trust in Him and we are praying for discernment on the pump. Here is what we are facing.
IF:
1. there is a leak in the catheter. The resolve is to replace the catheter which is surgery.
2. there is a leak at the entrance point of the catheter.
Resolve 1: God heals it via healing process of body. Resolve 2: God heals it through blood patch from needle by doctor.
We will be contacting Bohener and Reid for their input...jus kidden'
We are praying and waiting on word on what to do. So Monday she is to get the pump refilled but we are not sure how that is impacted by the leak. We are also considering the removal of the pump if it seems that continuing complications are a high probability. Rachael has indicated that she does not like the pump in
So that is it in a really big nutshell….oh, the Lasagna and Chili? She is eating both regularly. The foods are mashed but she is eating! Rachael has a swallow test on Tuesday, pray that all goes well.
Hey folks, please keep Rachael in your prayers. She has developed another spinal leak at the Baclofen pump catheter site. She is going to the doctors tomorrow and may need either a new spinal 'blood' patch or surgery.
Next week is a busy one. On Monday - Wednesday Rachael as will be at 3 different doctors on each day. She is having her swallow test on the 2nd if God wills and we anticipate great news from the results.
Also, please keep Nancy in prayer as she takes Rachael via transport to the doctor. It has been a hard couple of days for Rachael but tonight she is quiet, listening to the new Phil Wickham CD, Restore.
Yes it has been a long time since the last update. I could write pages about what has transpired over the past few weeks. It has been a month and a day since the last update.
To start with the most current news, I held up my broken iPhone for Rachael to see tonight and asked her what it was. She said "I Phone" so clear that Hanna freaked! It was great. First off for her to see an object, associate what it is and to recall the brand name is fantastic! To hear her clearly speak the PH blend for the first time was thrilling. She still has a long way to go and her vocabulary is limited to a few words that we can sometimes understand. Nancy has been praying for the Lord to please let her speak with Rachael again. It looks like her speech is coming along. It has been questionable whether she has been able to associate objects that she sees with what they are. She now has left us with no doubt that she has association of objects to their identity.
Tonight Rachael was able to have mashed potatoes for the first time. She enjoyed the starch.
Rachael is scheduled for her 2nd swallow test on Tuesday the 2nd. This will give us an idea of how good she can swallow so that she may be able to learn to chew foods and drink liquids. It is more difficult to drink a liquid than to swallow mashed potato consistency foods. We are praying for hope that will arise from her swallow test that will one day soon lead to Rachael being able to drink and eat. Once she can do that, the PEG tube can be removed.
Rachael remains very healthy. She avoided a cold that went around the house and her regulatory system is functioning fine. She is VERY alert and enjoys sitting in my Lazy Boy chair (I have been dethroned by the Queen!). She spends a good portion of the day in her wheel chair and the remainder in the Lazy Boy until about 7 or so then we prepare her for bed. Now remember that she cannot yet walk and has some small motor control over her extremities but not much. The Baclofen pump is working well and she has been in for several increases. We have seen that there is a difference in the contractions as the amounts introduced to her spinal fluid are increased every 2 weeks. It will be several more visits before she has a therapeutic amount flowing.
Rachael still suffers from pain in her legs as she continues to heal. There are times, often, that she cries out from the pain. She is willing to go without pain meds for it but if it gets too bad she will accept them.
PRAISE REPORT: The pain in her eyes was diagnosed as being dry eyes! It seems that she does not blink nearly as much as we do. She can beat anyone in a staring contest right now. The Ophthalmologist prescribed fake tears for her eyes 4 times a day. She has not had another eye pain issue since we began this protocol. She is off several of her 20 odd meds. She is still taking a lot but as the Bacfolen pump does its job, she will be weaned off the other meds.
She remains in good cheer and has let us know that she is not angry about being in her condition or sad about it. The pain drives her nuts at times. She has high cognition so she knows what is going on around and about her. We have told her all that happened several times. She is a loving, forgiving, patient, joyful, kind and often very self controlled young woman in Christ. This shows that no matter the physical condition of the person, if they are saved by the blood of Christ, the Holy Spirit is alive and well within. He came for the sick in more ways than one.
You may wonder how Nancy and I are doing as well as Hanna and Daniel. It has been very hard. It was a H U G E adjustment. In retrospect, the first week was comical in a dark way. Nancy was constantly concerned about Rachael when she was not with her at Heartland or at Health South. Once home, Nancy had some peace. Her anxiety level was way down with Rachael at home. As for mine, it skyrocketed. I freaked. There was so much to worry about. There were so many new people popping in. New rehab, new speech, new nurse, new aide, equipment coming in, stuff not working right and of course a lot of thoughts not taken captive. I had attacks that week that I had until then not known. All I delivered was an emotionally volatile elixir of fierce words served up from an ugly heart. It was a terrible witness. After several mistakable days, broken and empty, I turned to our God as I should have and learned quick to not stray from his covering. I did not have much of an appetite the next week as I was eating huge portions of humble pie. You must understand that if we seek first His kingdom; His being Jesus Christ, God, He will take care of all the other stuff. If we try to do it alone, it stinketh.
I had taken a part time job at Living Word on Fruitville. With Rachael coming home, we quickly found I could not work during the transition. I worked there for just a few weeks. Then, after the dust had settled, an opportunity came my way from a place called Stewart Signs. They have been selling Church signs for 40 years. I am now working for Stewart Signs full time in sales. All that is great and it is really a blessing from our Lord, we both know this. Yet, it has been hard on Nancy. She is left to tend to Rachael all day. It is very hard work. Rachael remains not able to even roll herself to her side. It has been a struggle for Nancy. Hanna is fantastic at helping and has learned to do much from her mom. Still it is very hard. The toughest times are when Rachael is in pain. She can get very loud. I pray each day for Nancy to have the strength to get through that day.
It has been tough on occasion for Nancy and I as well. If it were not for Christ, we would have been done a long time ago. There is so much to deal with emotionally and physically with Rachael in the shape she is in. Rachael usually cries out several times a night for changes or discomfort. There was one night a few nights ago that she slept through the night. The biggest problem for us is that we do not get the sleep we need. I am use to living on 5 or 6 hours a night. Nancy is not. We are doing fine even with the bumps we hit. It simply is hard sometimes. There are friends that come by to help out around the house, or to watch Rachael. Deb White has been a great blessing. There are a few other active helpers, a one hand count. It does break your heart a bit. It breaks for those that have become acquaintances that were much closer as they are missing the blessing of Rachael. I am sure they are praying but it would be nice if folks showed up for Nancy or just to give us a few hours to go out together. We are unable to go to Church together and we really miss that. We take turns, every other Sunday the other gets to go. Rachael is not acute and like anyone is usually in great spirits. She likes company but she is dependent and can not be left alone.
We have received great support from various folks with Rachael's trust fund. The money has helped to pay for Rachael's needs and will pay for her Hyperbaric treatments. Our Church, Calvary Chapel of Venice was very generous. Calvary Chapel Refuge in Bradenton provided a nice donation and the most excellent family of families that make up Calvary Chapel School gave a huge amount that arrived at a very important time. Nancy and I were blessed beyond measure financially and spiritually the last day of school at Calvary Chapel. We love you guys and will miss being there. Hanna will continue to school there as long as the Lord lets that school do his good work. I pray they can become a high school! Surprisingly, most of the donations in Rachael's trust have been from strangers. All in all, the money has helped with the start up of treatments, acquisition of items that Medicare will not pay for ( good as they are, they have many limitations) or that Medicaid cannot pickup. By the way, if it were not for Medicare and Medicaid and the fine folks we have worked with in those offices, Rachael could well be dead. It is that simple. We all have our opinions on these programs but they were used in a mighty way. They are stringent too. There is little waste and high accountability. They won't get you a Caddy but they will pay for the bus.
Hanna had some adjustments to make. It was hard as Rachael needs so much attention. She has grown so much in the Lord over these past few weeks. She is reminding us at times what the Lord's will is. She is not wise in her own eyes, she does not like how she can feel and she seeks the Lord to get the help. It works. She is doing much better, having a very enjoyable summer and continues to be a huge help around the house. She took her bike around the block, solo, for the first time a few weeks ago. It was a big day.
Daniel is busy. He works a part-time job, plays worship at two churches, helps out in a band, is involved with youth ministry and is a great brother. Oh yeah, he is going to school full time too. Bittersweet it is as he will be moving out to California in August to go to Bible College at Calvary Chapel Bible College in Murrieta, California.
So that is where we are at for the moment. One other thing is that we want to thank our friend Glenn Albert for his wonderful work around the house. He had a friend that was in possession of a power lift for immobile patients. His friend gave it to him to give to us. Glenn installed it and with some mods around the house, we are able to get Rachael out of her bed and into the bath with much more ease than we had planned. Thanks Glenn for all you have done!
We still get visits from John at Heartland. He has blessed us by having several dinners with us. We cherish his friendship and he is a great friend to Rachael.
Sunilda from Heartland continues to encourage Nancy, thanks Sunilda, Chica and Joy bark 'hi!'
Ok that is it for now. Sorry again to have been so long in updates but we hit the bricks running when Rachael got home and it is only starting to settle now.
Prayer requests:
For Nancy to be filled and lifted-up. For more help to come to give her a break during the day. For me to continue to find ways to love her and to remain a solid spirit led leader in our family. For Hanna to continue to not feel jealous or frustrated and for Daniel as he prepares to leave for Bible College. For balance in the home. For Rachael, for her healing to lead to her walking and talking . Most of all we give thanks to our Lord Jesus Christ for all He is doing in us and Rachael and the many opportunities to have Christ shared or shown through Rachael. God gets all the Glory!
O God, our help in ages past, Our hope for years to come, Our shelter from the stormy blast, And our eternal home! From O God Our Help In Ages Past by Isaac Watts
"As for the days of our life, they contain seventy years, Or if due to strength, eighty years, Yet their pride is but labor and sorrow; For soon it is gone and we fly away. 11 Who understands the power of Your anger And Your fury, according to the fear that is due You? 12 So teach us to number our days, That we may present to You a heart of wisdom. "
Psalm 90:10–12
I pray that the Lord teaches all of us to number our days.
This is the day the Lord has made for Rachael to come home. HOME!! She is excited, over stimulated at the thought. She has admitted this. It has been an emotional morning for her. This morning at first sight she was grinning from ear to ear. When I asked her where we were going today she spoke HOME. Yes, home. This is a new season that we are entering and though this trial is not over, the worst of it is. The traveling back and forth, the moves, all the things that have happened. The struggles, the tension, the falling on our knees over and over. The tears, the hurt, the anger, the sorrow, the prayer, the prayer, the prayer. We and you have been on a road that has changed us. Some more than others. Nancy and I have a new found level of trust in our Lord that is of the kind of stuff that Oswald Chambers speaks of but we never thought we could know.
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. James 1:2-4
We have abandoned ourselves to our Lord. We were brought to a point where there was no place else to go. Helpless. He was and remains our help. Rachael prays with us. At times she literally cries out to the Lord. Her faith remains strong, she prays, she worships. She has the Holy Spirit in her. She has the word implanted. She is saved and Jesus is her Lord. Nancy has called Rachael a missionary. She has taken us to so many places physically, spiritually and locally geographically to have our faith tested. She has provided numerous opportunities, a myriad, to have God glorified in her struggle. She has given us huge opportunities, from CEO's to Doctors to CNA's to janitors to share the word of God. We have prayed with others suffering with the pain of the loss of good health of their loved ones. Some we have prayed with, have seen the end of their loved ones time. Through Rachael, new friends have come into our lives. Several have simply fallen in love with Rachael and have treated her with care that we could not understand. There have been several times when we have walked into Rachael's room and there have been staff taking their break with Rachael. One lady at Healthsouth would come in and lightly massage Rachael on break. Here at Heartland I do not have the time to explain the wonderful, heartfelt and spirit driven love that God has put into the hearts of many of her care takers. One in particular is a man by the name of Hepler, almost like Helper. He has seen Christ in Rachael and in us. He has the witness through Rachael. He has been the most caring servant to Rachael. He was above and beyond what a CNA does. Bill, Susan (great gains in speech and a good friend to Rachael), Valerie, John, Sunilda, Ty, Jeff, Kathy, Jodi and Lorie you are in our lives with a love that won't remain behind here today. It will remain in our hearts and we will see you guys soon. You people are the Heart in Heartland. Thank you so much for caring for our daughter as if she were your own.
There are many many more. God has brought so many people into our lives through this tragedy. Thank you Lord Jesus, God most high, our Lord and Savior, THANK YOU!
In 20 minutes a van will arrive and it is Rachael's chariot into a new season in recovery. After 5 1/2 months, our girl is home. We thank you for all your prayers and support. Updates will definitely continue. Healing is continuing. The worst is over, the training is over, it is graduation day for us all. The ministry continues. Thank you Lord Jesus for your presence in our lives. I believe that it was your response in prayers that provided the effective result from our God.
Even though it is 'home' it is the temporal. We are citizens of a better place where there is not pain or suffering and we look forward to that day. Until then, we have a God who is with us in the mire of this earth. Thank you Jesus, for all you have done so far.
Travel mercies and a comfortable adjustment for Rachael are the prayer requests for the day. All the equipment arrived, the house is setup on the inside for her support. We are spiritually prepared and competent to aid and minister to Rachael. Wow, this is the day that the Lord has made for Rachael to get back home to Venice.
Tonight we had a wonderfully relaxing time with Rachael. She had a great bath that she enjoyed. Following that we had lots of laughs with her. She is excited to be going home and is without pain tonight. Thanks to Jesus for this night.
Nancy asked that we post a neat way for you to bless Rachael and Hanna. Rachael has been wearing a hospital gown for 5 1/2 months. Hanna, as you might not know, has been a wonderful servant to her sister. She has been on this ride with us since the accident. Hanna has died to many of her own needs during this time. She has grown much stronger with her relationship in Christ. She never whines yet she is very honest in a loving way about her feelings. Transparent. Through all of this she maintained a straight A average in school though many nights she got in late. She has encouraged both her mom and I with notes crafts, words and verses. Hanna has even taken to writing poems and lyrics. Quite honestly there were nights when I had nothing left and Hanna would pop in and lift our spirits with a joy bent on diverting our sorrows or self pity. So where am I going with this? Pajamas. Yup, pajamas. Nancy has asked that if you would like to have some fun blessing the girls send some pajamas. Rachael is going to be in pjs most of the time as she heals and rehabs. Hanna loves them so it would be neat to see pajamas start showing up. I know we have asked for your support in so many ways This would just be a neat way to bless the girls and bring great joy to Hanna. A Pajama Blessing. As far as the pjs go, here are the sizes: Rachael - Size 12 Womans Hanna - Size 14 Girls (she is 12-13 right now but she is shooting up fast) Nancy - Size 8 Womans
I asked for Nancy's size. Yes guys, I had to ask I did not know. She was thinking of Rachael and Hanna. I wanted to add her to the request. You don't have to buy for everyone. Just pick one. Pick some wild ones, pretty ones, crazy ones, happy ones, whatever.
Have fun!
So if you want to have some fun with this, we will publish the pics. Here is the address.
369 Sea Grape Rd. Venice, Florida 34293
Daniel likes footies. Just kidding. He does not wear PJs any more. Garanimals.
It was a very trying week for all of us. After the Baclofen pump was put in, Rachael's recovery was not fun to be a part of. As the week progressed the issues escalated. To do the surgery she had to be without meds for 24 hours. Some of those meds are narcotic and she grew agitated at their absence. Without pain meds, muscle relaxers and the lot, post op was traumatic for Rachael. Looking back to earlier posts, Rachael will 'storm' on occasion and it is usually precipitated by a traumatic experience. She developed a severe headache and vomited. As it turns out, the Dr. diagnosed a leak in the dermal layer which is where the catheter for the Bacfolen pump is inserted. Sometimes it makes for a small leak around the hole. This comes with the territory and is nearly impossible to keep from happening. The Dr. that inserted the pump is a very skilled surgeon. I had the privilege of watching him work. The symptoms of the leak are a vicious headache, vomiting and disorientation. Rachael had all three. The resolve is to take some of her blood and insert it into her dermal layer. It goes to the leak and coagulates, plugging or patching the area around the hole. The colloquial term for it is a blood patch. We had to spend a few nights with her to keep an eye on the vomiting. For several days she maintained an elevated heart rate, profuse sweating, a small fever and verbalizing her discontent. Nancy and I laid hands on Rachael, I anointed her with oil and prayed for the headache and surgery related issues to go away. The next day (yesterday) the headache was gone and Rachael had a pretty good morning but her day went a bit sour when her left eye muscle began to spasm or cramp.
She had an uncomfortable day but as the eve has progressed tonight she is relaxed, laughing and pretty much back to normal.
So it has been a rough one. The good news is that the pump appears to be doing it's job. As of tonight, her legs are much more relaxed than before. The most relaxed I have seen since she came out of her coma.
So Tuesday she is on her way home!! Rachael's journey moves into a new season at home. We are so excited that she is going home. We have been traveling back and forth from Hospital to Rehab to Venice for over 5 months. Both Nancy and I have really been stretched these past few days. We need your prayer. Though she is going home, you can imagine the huge change it will be for us. We want to maintain a good witness for Christ as we sprint to the finish of this part of the race. Pray that we do.
"I press on toward the goal for the prize of the upward call of God in Christ Jesus. 15 Let those of us who are mature think this way, and if in anything you think otherwise, God will reveal that also to you. 16 Only let us hold true to what we have attained. "
The Holy Bible : English standard version. 2001 (Php 3:14–16). Wheaton: Standard Bible Society.
Rachael slept most of the night. She really got into a deep sleep after about 2:00 am. Dr. Simon held her night time meds until we can figure out what is going on. To recap, Rachael vomited several times yesterday and when done had occasional dry heaves. The good in all this is that she went the whole night without the meds to slow her heart beat yet maintained a normal resting heart rate. She did have minor spasms during the night. This morning she will get her muscle relaxers and pain meds. She looked pretty good this morning but was very tired. Nancy spent the night at Heartland and I popped in about 3:45 AM because I missed her.
Rachael will get some blood work today to see if we can get to the bottom of her nausea. We are not feeding her the regular liquified foods that she has been eating. We are giving her juice until we are confident she can handle the food.
Keep praying that this passes soon. We know this is just another step, another trial within trials. How do folks do this without the Lord? We have the higher rock and to him we cling!
Don't forget to give Nancy a text for her birthday today. 941-323-6101
Hey folks, Rachael has been vomiting by increasing frequency each day. Today (Saturday) she was vomiting steadily for about an hour. At the time she is resting comfortably and we are waiting until 5;00 before deciding whether to take her to SMH or not. Our Dr. is aware of what is going on and being updated if anything changes. We are asking you to pray that we find the reason for the vomiting. It could be one of several things including her current med protocols, her pump or her feeding tube. We just are not sure. Please pray that the Lord will reveal this to us, stop the vomiting and be glorified in this bump in the road.
Thanks, Burt
PS -- ** Sunday is Nancy's birthday. Please text words of encouragement to her at 941-323-6101 and be sure to sign your name as she has very few contacts in her phone. If you don't text please send an email to her at burtandnancy@gmail.com.
One of the draw backs of being a step-dad is that you have no stake in the claim of your child's beauty. Nancy is striking. I remember when I was a single Christian I use to marvel at some of the 'geek' looking guys that had these gorgeous wives and thinking either God has great grace on the man or the women was the object of God's wrath. After reading Romans 7 for the first time, I realized it was grace for both. Regardless, I never thought I would be so blessed. Well, now I am the geek looking guy and I have an extraordinary wife. Beautiful inside and out with a humble transparency for a base that Mark Kay could never conjure in her labs. Filtered by pollution from man, smoke from Florida or ash from New Zealand, the sun rose as a distant orange sphere. This morning, Rachael's beauty was kissed by this softer version of the greater light. I wake up looking like three day old raccoon carrion in the turning lane of an exit ramp, she wakes up like someone in the movies, full make-up and Photoshop touch-ups. She is so beautiful. Her grand smile returned today along with her laugh and her awareness. The shroud of fear and the chemically induced blank stare of yesterday were shed for the bright focused twinkle, the scintilla of the rising sun in her bold brown eyes in this quiet of the morn. It seems a prophesy of better things to come. This is a beautiful morning, a new day.
It will take a few weeks for the Baclofen levels to be adjusted. As this happens she will be weaned from the 4 muscle relaxers that she is on. This will increase her alertness and ability to react during therapy and help with other functions. Soon, very soon she will be home. The burden of the travels to and from Hospitals and Rehab centers will end. A new season in this journey will begin and we will cling to that higher rock as we get to get through this together. It is not that we have to get through it. We get to get through it! We get to honor God in all of this, we get to serve Rachael. We get to share Christ with so many. We get to watch Hanna minister to elderly folks and see Christ revealed in her. We get to watch Daniel as he attends SCF full time, prepares for Bible college, ministers to the youth and yet takes time to come up along side us during the hard times. We get to have joyous meals prepared from the hands of those who love Jesus Christ and show it in their works. We get to watch many of Rachael's caregivers fall in love with her. We get to watch God answer prayer after prayer. We get to share with you on this blog. We get to hear from so many of you in reply. Many more are blessed from your words.
Pastor Bob Wulfing, our pastor at Calvary Chapel of Venice is out in California at the Calvary Chapel Senior Pastors Conference. Last night a bunch of the guys prayed for Rachael and for her to get through this surgery without pain. She was quiet with her eyes open for most of the this morning until we began our banter and the construction of the east wing of SMH started which wrought laughter from Rachael, she did not have any pain killers. Not too much evidence of pain there! Thanks guys. Thanks to all of you for your prayers over the past few days. Please continue to pray for no infections as the wounds heal over the the next 7 days.
Pastor Bob suggested I read Psalm 61 yesterday and I had forgotten that it was one of the Psalms we turned to in the early days of Rachael's accident. It gave us some guidance on where we needed to be:
Let me take refuge in the shelter of Your wings. [fn3] Selah.
It was good then and it we hold to it now.
Thank you Jesus for getting Rachael through this 1st 24 hours and answering the prayers. Thank you for being so close to us and thank you for letting us be saved by you!
Pray for Rachael today. She is in Surgery early this morning for the installation of her Baclofen pump. Baclofen is an extreme muscle relaxer. The pump puts the drug directly into the spinal fluid in microgram amounts. We pray that:
1. There will be no spinal fluid leaks. 2. That the drug will permit Rachael's legs and arms to relax. 3. That there will be no other complications.
Please continue to pray for her complete recovery with all the glory going, no matter what the level of healing, to our Lord and Savior Jesus Christ.
On Thursday, May 26th Rachael was moved back to Heartland until she gets the Baclofen pump and the house is ready. She began yelling aloud as is common for her to communicate discomfort. Nancy figured out that Rachael was saying "eyes", "eyes". Nancy wiped them clean and Rachael calmed down until I showed up. Then she started again. We did the normal inventory of irritants, ""is there something in your eye?, Do they burn?, Do you have a head ache? All of which were "No" from Rachael. Then I did the quick check of moving my hand quickly at her face,. She winced. I did it again she winced. On the third try she laughed and on the 4th she was a bit upset. I said "You can see me?" and she replied "Yes", I then held up my fingers and she was able to tell me how many fingers I had up. After her repeating this several times I freaked out! Daniel, Nancy and I were present and blown away. I was very excited and she started laughing hard. She could see!!! We praised God and thanked Him for this healing. When I got back to school that afternoon, I shared the story with several teachers. Mrs. Beauchamp, the 1st Grade Teacher at Calvary Chapel School was thrilled and we shared it with her kids. They had been specifically praying for Rachael to see. Later, Mrs. Beauchamp told me that the kids were very excited and were asking what they should pray for next!
Your prayers continue to help make these impossibilities a possibility through Jesus Christ who makes all things new. Nancy has thought that Rachael had some sight. We knew that she would wince when the sun met her face. We never could verify that she was actually seeing anything more that light and dark. Now we have!
I know that there are those of you reading this that think we are hopeless Jesus Freaks and get a Hallmark Channel rush out of how we have been dealing with Rachael's recovery. I also know that supernatural healing by our Lord is beyond your belief system. That is great. I am so happy you are keeping up with what is going on with Rachael. You might pray, maybe to God, maybe to 'the universe'. Like the radio telescope at Arecibo, prayers go up hoping to find something that will respond. I think we can agree that order never came out of an explosion. If even then there is doubt, if there was a big bang, then the question that needs answering is who made the big bang go boom? You might think that faith in God does not make sense. Try making sense out of the fact that there are people that say we came from monkeys. Before that we came from some fish and before that some cell that happened to kick start itself to life that was in a pool of water that just happened to have the right amino acids that just happened to exist that happened to be ignited by a meteor that just happened to be there, at the right time striking a planet that just happened to be tilted at the perfect 23 degrees that happened to be the perfect distance from the perfect sun to produce life. Faith in Christ is a whole lot easier than faith in that. Look at the design of the simple leaf. It took the Navy a long time to figure how to make Oxygen out of Carbon Dioxide. Look at the cell. There are so many dependent parts to the cell, each one requisite to the other that evolution could not have made a working cell. In other words, it had to happen all at once for without the parts, the whole would not function. Look at yourself. We have learned over the past few months how fragile yet how incredible is the human brain. Such work shouts that there is a designer. There has to be something behind all of this. The Bible tells us that:
15 Christ is the visible image of the invisible God. He existed before anything was created and is supreme over all creation, 16 for through him God created everything in the heavenly realms and on earth. He made the things we can see and the things we can’t see—such as thrones, kingdoms, rulers, and authorities in the unseen world. Everything was created through him and for him. 17 He existed before anything else, and he holds all creation together. Colossians 1:15-17
Jesus Christ did it and holds it all together. He is the maker of the heavens and the earth. He made you. There is so much that our Lord wants to do in your life but he loves you enough to let you make the choice. Choice. It is about responding to His call. You can choose to ignore. Romans 10:9 says "If you confess with your mouth that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved." If we hold ourselves up to the standard He set, the moral code of the 10 commandments, we can see where we have broken one if not all and do so regularly. If the wages of breaking those commandments is death, hell, where do you stand? God calls it sin and the result of sin is death. Hell. Yet, if we trust in Christ as told to us in Romans 10:9, we accept the gift for Christ taking our punishment for us. The only one to free us from this problem of breaking the law is the lawmaker himself. He took our punishment for sin, rose again to beat out death and lives. He also has provided us with the Holy Spirit, God, living in us if we are saved. Please, heed the call. You ain't perfect and you are a sinner. Also know that you are never too bad to come to Jesus. He loves you. The Bible says that our lives are like withered grass, like a vapor. Here today, gone tomorrow. We are very fragile. Yet what we do here has eternal ramifications. I hope that you do not wait another moment to open your heart to Jesus Christ. God on earth, God in us, God the Son. All you have to do is realize that you are a sinner destined for death beyond the grave and without Jesus Christ you can do nothing about it. With Jesus Christ you have life beyond the grave with Him. Not bad. To be with the creator of the heavens, earth and you. How awesome that day will be! Believe that He died for your sins, He did, believe that he rose again, He did and make Him the Lord of your life, the boss. Call me if you do this. 941-545-0713
God bless you and let the Glory of Rachael's healing go to Him, to God! Praise the name of the creator of all things, Jesus Christ. On Thursday Rachael's eyes were opened. Now let God open yours.
Trying to get Jesus in a trap the Jewish leaders questioned a man healed by Christ:
John 9:254-25 So for the second time they called in the man who had been blind and told him, “God should get the glory for this, because we know this man Jesus is a sinner.” “I don’t know whether he is a sinner,” the man replied. “But I know this: I was blind, and now I can see!”
