Update #22 - Am I Going to Die?

After a hard night and a horrendous morning (the worst he’s ever been and the worst experience of my life), Robbie was heavily medicated and he slept for a few hours. We have had several people feel called to come today and pray over Robbie, all from different cities and different churches. One woman, a friend of Tanja’s sister, was here when he awoke and she had been praying healing over him for about an hour.

After he woke up, he was crying and he pointed towards the spell board (a magnetic board with letters that we’ve been using). He wrote “Carry me” and pointed to me. One of the things he has wanted me to do is pull a chair next to his bed and pull him onto my lap. It usually doesn’t last very long because he begins to have muscle spasms in that position. 

We had a morning of seeing Robbie’s wet-with-sweat body screaming uncontrollably, Robbie clawing, scratching and trying to bite anything near him, and he would scream even more when we tried to touch him (they think he had a severe withdrawal from valium). After that kind of morning, I was wanting to hold him more than ever before and happy to be asked.

Once I was holding him, Robbie put his arms around me and began weeping and pointing to the spell board. It is very hard, motor-skill-wise, for him to pick letters up and put them on - every letter is a chore. It frustrates him when we try to guess what he is spelling because we often guess wrong so we have developed patience in letting him spell until he is finished. He spelled:

A-M I G-O-I-N-G T-O D-I-E

Then he began weeping as the four of us with one voice said, “Oh, no, no! Jesus is healing you, you are getting better, God has a future for you, you are going to be a great man of God” and we all just wept together with him as we gave him every assurance our hearts could muster. We told him about all of you, ALL OF YOU, praying and praying and praying and all the people who God has given words of assurance and visions of Robbie’s future to. Tanja asked him if he had seen Jesus and he immediately said yes and started crying. I told him that seeing Jesus did not mean he was going to die, it just meant that God was answering our prayers and that we had asked the Lord to visit him as he slept. One of the prayer warriors in the room told him about her vision she had had of Robbie and I standing on a Tibetan mountain top praising the Lord together. Robbie, whose arms have not straightened well in 3 weeks, immediately lifted his hands to heaven, arms straight, looking up in worship. He then spelled “Me too” - he had seen the same thing. And we began singing “Be strong and courageous and do not be afraid, the Lord goes before you each and every day, He’ll never forsake you, don’t be afraid” and Robbie again lifted his holy hands in praise. He then asked for the spell board and Robbie spelled “God’s blue finger touched me”.

We all gave God praise for the healing touch He is giving Robbie and Robbie immediately calmed down. We sang “Lord, I Lift Your Name on High” and he did the motions to the song as best as he could. He looked at our visitor who had been praying and spelled “Thank you”. 

That thanksgiving goes to ALL OF YOU who have so faithfully lifted up our son. 

Our son is sleeping now.

God is good.

Ken

UPDATE #21 - Away for Two Days

Greetings everyone, 

I am back at the hospital after being in Northwest Arkansas for 48 hours to try to find some records for insurance and aid programs and also to try to get some finances in order among other things.

Tanja’s sister Heidi was here Saturday and sent the following update out to the Facebook group that is praying for Robbie (now with about 1,100 members!) -

======================================

Kenneth has been in Fayetteville with Shelby and Bethany from Friday afternoon through Sunday afternoon.

I’m going to just write a brief update to try and keep all of you prayer warriors informed.

Robbie is still struggling with muscle spasms the last couple of days and had a very rough night last night. He had to get another IV put in because his sodium was low and he was beginning to dehydrate. He has occasional sips of water with a spoon and sometimes eats ice chips. His last day to receive steroids was Saturday morning.

He is continuing to be bothered by his feeding tube and yesterday the surgery team decided to have a peg tube surgically inserted into his stomach. This surgery will be Monday or Tuesday. They are hoping this will not be so annoying for him and may in fact help him with his swallowing and speech.

Sometimes it is very hard to witness the tremendous pain he’s having to endure. At this point he’s had 13 IV’s put in and moved rooms in the hospital 5 times. Yesterday alone, he was “pricked” 12 times for blood samples and his young body is bearing the scars and bruising

Today (Sunday) after talking to Tanja she did say that he was communicating (either by writing a word on a marker board, or answering yes or no with his hands) some better. His attention span was good and so she told him stories and he listened and liked it and even laughed. (It was a story about a young brave prince named Robbie and his two princess sisters Shelby and Bethany. And Tanja used this story as a way to explain to him about some of what’s gone on with him being sick.) It’s hard for the family to know if he has a concept of time and understanding about what all has gone on.

The entire family is so thankful for the continued prayers for this sweet child and asks for more on his behalf.

PRAY FOR THE MUSCLE CRAMPS TO STOP.
PRAY FOR THE SURGERY TO BE SUCCESSFUL WITH HIS NEW FEEDING TUBE IN HIS STOMACH.
PRAY THAT HE WILL BE ABLE TO SWALLOW AND TALK.
PRAY THAT HIS FEET WILL BE STRAIGHT AND HIS THERAPY SUCCESSFUL.

AND DON’T FORGET TO PRAISE GOD IN ALL THINGS FOR ALL GOOD THINGS ARE A GIFT FROM HIM. THANK YOU GOD FOR JESUS MOST OF ALL!

========================================

Unfortunately, my 2 days away were 2 extremely difficult days for Tanja and the many family members and friends who filled in for me. After arriving, Robbie wanted me to hold him so I pulled up a chair and pulled him into my lap and we cried together for a while and then he seemed to settle down a bit. We (Tanja, Shelby, Bethany and I) got his IV and feed tube unhooked for a bit and put him in a wheelchair and took him on a grand tour of the hospital which he seemed to enjoy. He started getting pretty tired after that and is now asleep. Bethany is reading next to me and Shelby is rubbing Tanja’s very sore neck and back.

Though it was very hard to be away, it was a blessing to receive in person the love and prayers from so many of you in NWA who have been lifting up our son. Thank you and God bless you all.

Ken

Update #20 - Therapy Tears

The past three weeks are like a slow-motion blur unless I look through the updates I have sent. Imagine having a transcript of all the prayers that have gone up on behalf of Robbie! God has them - He knows and remembers every word that you have spoken and they are embedded into His heart and are not wasted. Thank you all.

Robbie had a good and relatively busy day yesterday. His sisters and Wornock cousins came and they had fun having a full-blown nerf-gun war. His physical therapy team took him up to the rehab floor and gave him quite a workout. It was good but extremely difficult and challenging for Robbie. He ended it with many tears but was strong and worked hard. We know, for him, it will probably get harder as he will be challenged to fight hard for his abilities to return. He is unable to flatten his feet (see pic) at all right now and that is the biggest concern for those doing physical therapy.

PRAY THAT ROBBIE’S ANKLES AND FEET WILL RELAX SO THAT HE CAN BEGIN WALKING AND PRAY THAT HIS MOUTH AND TONGUE WILL BEGIN TO WORK PROPERLY.

He had a great night and slept from 9:30pm-5:30am which was his best night’s rest in a long time. They have been tapering off of a lot of his medications which is good but this morning he had about an hour of pretty intense arm and leg muscle crams and seizures so pray that Robbie’s doctors can find a good balance of lowering meds but not so fast that he has hard hours like this morning.

Thank you all and blessing upon you,

Ken

Update #19 - Be Still

LATE IN THE EVENING OF JANUARY 7

It is hard to be still right now. Being still gives our minds time to assess our situation - to contemplate the condition our son is in right now - to think about what he can’t do or, even harder, what he could do just a few weeks ago - to think about the fact that the most talkative boy you’ve ever known hasn’t spoken a word to us in three weeks and can’t communicate what he is feeling, his worries and fears, his questions and concerns, so that we can answer him and comfort him. Right now, being still is hard, it is a time of fighting back tears or surrendering to them and letting the waterfall flow once again. Sometimes, being still allows our minds to go where they shouldn’t go, to think like Job’s friends, wishing we would have fasted when he first got a fever, wishing we would have prayed more fervently, wondering if there was something we could have done differently. We would rather just keep busy than to go to the quiet place and be still.

We know that this is not the Father’s desire for us. He desires for us to be still and know that He is God. Maybe it is in the surrender of tears that we find a loving Savior who will, one day, wipe every tear away.

PRAY THAT ROBBIE, HIS PARENTS, HIS SISTERS, HIS FAMILY, HIS FRIENDS AND ALL THOSE WHO ARE PRAYING FOR HIM CAN BE STILL AND, IN THIS STILLNESS, KNOW THE ONE TRUE GOD WHO LOVES, HEALS, PROTECTS AND SAVES.

Update #18 - Facebook

Greetings to all of you. My daughter and sister-in-law have been telling me about a group on Facebook that was created for people praying for Robbie. I reactivated my account today to check it out and was touched and humbled by the close to 900 people who have signed up for the updates and are writing messages of support and prayer for our son. As I went through and looked at the members, I didn’t even know more than half of them.

Robbie continues to work hard trying to do things that he used to do without thinking: closing his mouth (not yet), moving his tongue (a little), swallowing (some), being able to grab and hold onto things like balls or nerf guns (better each day), moving his legs (some), putting his heels on the floor when he stands (sometimes he is able to but most often not). So, we continue to give praise for small improvements and at the same time our hearts break with the overwhelming desire to see our son be the healthy and active young boy that he was a month ago. 

They are talking about moving him up to the Physical Therapy wing so they can do more with him throughout the day. This will be dependent on what our insurance will allow. I spent a few hours today trying to get things figured out with our international insurance which, I’m sure, is dealing with sticker shock at American medical costs.

PRAY THAT OUR INSURANCE WILL COVER WHAT IT IS SUPPOSED TO AND THAT ROBBIE CAN MOVE TO THE PHYSICAL THERAPY AREA.

I will be heading up to Fayetteville with our girls Friday afternoon and returning Sunday afternoon. Tanja will be here with my brother and sister and others who are helping out.

Blessings to you all,

Ken

Update #17 - "Persistent Widow" Army

It was a blessing to have our dear friends, the Brays, come and visit.  Pictured:  Amber, Rainy and Luke (a fellow Nerf gun fan) with Robbie.

So many are praying and going to the throne of grace on behalf of Robbie. It is like having an army of “persistent widows” with a common cause. We know each and every one of you is beloved by our Creator and He is listening passionately to your pleas for our son's healing. 

Robbie had a bit of a long night. Muscle spasms were strong enough to wake him up pretty much every hour and would keep him awake about 20-30 minutes. We are going to try to keep him awake a bit more during the day so that he can hopefully rest better through the night. 

Robbie is continuing to improve in small increments and every nudge back toward health is a joy to see. We noticed this morning he seemed to be able to swallow when he wanted to instead of just doing it reflexively. He is enjoying hugging everyone who comes in his room and then, shortly thereafter, shooting them with a nerf gun. He moves very slow and does not yet have the strength or stability to load and cock his gun but is certainly very good at aiming and pulling the trigger.

PRAY FOR ROBBIE TO HAVE A STUBBORN AND STEADFAST DETERMINATION TO WORK HARD IN PHYSICAL THERAPY AND SPEECH THERAPY. Pray for strength and stamina, patience and compassion for all who work with Robbie.

“And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly.” - Jesus (Luke 18:7-8a) after telling of an unjust judge and an importunate widow.

Grace and peace,

Ken

Update #16 - Monday, Monday

It turns out that not all Mondays are bad. This has been, by far, our best day since arriving at the hospital two and a half weeks ago. His spasms are very minimal and he has rested most of the day. When he does wake up he is very calm and acts like he is on a lot of heavy medication (which he is).

We actually woke him up so he could do physical therapy for about 20 minutes and then some speech therapy. He did quite well, he was able to, with assistance sit up and hold his head up. He stood and with support walked to the window and back. His buddy, Gabriel Peters, visited while he was doing this and Robbie was hugging him and not wanting to let go. He cried tears when Gabriel left. This is a good thing as he has not had tears for two weeks and we have been having to put eye drops in his eyes. He is very aware now that he does not have normal abilities so pray for his emotions.

PRAY FOR HIS ABILITY TO MOVE HIS TONGUE AND LIPS AND TO SWALLOW. As soon as he can do these things, he can begin to drink, eat and possibly get rid of his IV and feeding tubes. What a blessing that would be! He would also be able to begin the process of relearning to speak. Everyone who knows Robbie knows how passionate he is about being able to, through speech, share his knowledge with anyone around him. :-)

It is abundantly evident that the body of Christ has rallied around us in amazing ways and we continue to be powerfully moved by the love that God’s family is showing to us. Please continue to lift us up and pray for strength to persevere with full faith in the God of all good things.

Thank you and God bless you all,

Ken

Update #15 - Vision of Healing

Greetings to all of our friends, family and prayer-givers,

Robbie is continuing to get better. “Better” is of course relative as he cannot stand or sit on his own and cannot speak. He is communicating through hand gestures now and is quick to show love to all who visit by holding his arms out for a hug (even his sisters-he cried when he saw them). Two days ago you couldn’t even pull his arms away from his body as they were seized up against his torso as tight as a boxer trying to protect his mid-section.

We have moved out of “step-down” and back into a normal room in neurology, same room as before - 4C3.

PRAY AGAINST FEAR AND ANXIETY. As he is becoming more cognizant of his situation, he is also having what seems like panic attacks to the point where he stops breathing and chokes he gets so worked up.

We believe in our hearts that full recovery is in his future. A friend of ours who is a member of Downtown Church of Christ in Searcy had a “first-ever” (for her) spiritual experience as she was in the room praying for him. In her words, she had a very clear vision of Robbie and I on a Tibetan mountain-top. I was singing praise and he had both arms up and was shouting praises to His Savior. We believe this is in Robbie’s future and ask that you pray this is so.

Thank you again and please continue your faithfulness in prayers for our son. Rejoice in the Lord always, and again I say rejoice!

Grace and peace,

Ken

Update #14 - Seizing Unceasingly

Robbie had an amazing day of rest yesterday but today is really having a hard time. He is communicating through yes and no sign-language and is very aware of his pain. His legs are seizing up unceasingly this morning and he is unable to rest again. This is the part of our caring for him that is so difficult, to see him anxious, hurting, crying out and sometimes yelling with no meds seeming to bring him relief from it.

We feel that God used your prayers yesterday to feel us with hope for Robbie’s recovery and we thank you for that. PLEASE PRAY FOR HIS MUSCLE SEIZURES TO COME TO A PERMANENT END and for the road to recovery, however long or short it is, to begin. Pray that this aforementioned road IS short, more like a driveway leading home.

Grace and peace,

Ken and Tanja

Update #13 - Philippians 4:6,7

Good morning,

We are blessed with a peaceful morning and a son who slept well through the night and is still sleeping. It may be that his seizures have eased up enough to allow him to fall into a deep sleep. Seeing him peaceful and resting is a blessing that I don’t believe I will ever take for granted again.

PRAY THAT GOD VISITS HIM IN HIS SLEEP, giving him peace and strength and keeping away fear and anxiety about what is going on.

Thank you for the prayers you continue to offer up for all of us. I know Tanja and I both feel the strength of the Lord because of your faithfulness.

Don’t worry about ANYTHING; instead, pray about EVERYTHING. Tell God what you need, and thank Him for all He has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard you hearts and minds as you live in Christ Jesus.

- Philippians 4:6,7

Ken 

Update #12 - New Year's Day Evening

We just spent quite a lot of time with Dr. Sharp, our main Neurologist who has been overseeing Robbie. He has been great. He let us see the MRI and showed us the area of his brain effected (it is significant). He also spent some time helping us with expectations of what we might expect under normal conditions. He would hope to see some fairly significant improvement over the next couple of weeks but that it may take 6 weeks or more before he could get to the point to even begin to rehab. He said it may be anywhere from 3 months to a year before knowing just how much of Robbie’s abilities might return.

We are thankful to know that, should God go along with this plan, he will give us the strength we need and, should God decide to work a miracle, we will give Him all the glory.

PLEASE PRAY FOR A MIRACLE OF HEALING TO TOUCH OUR SON.

He finally went to sleep around noon today. I never knew how blessed we are to be able to rest. It is why the seventh day was good and made holy, I’m sure.

We love you all,

Ken

Requested Information

ROBBIE - INFORMATION

Hello to everyone, in response to various questions, I wanted to just send some information.

HELPING OUT: As this seems to be stretching out, our need to spread out the help in order to not burn people out will increase. Many of you have asked what you might can do. We will probably begin to need people to come to stay with Robbie at various times to give us and family a break. We have had a lot of people say they’d love to help so, even if you volunteer, you may not be asked. Also, we want to be sensitive to Robbie’s needs in this as well.

Tanja’s sister Heidi Wornock is going to help organize this so you can contact her if you are able to help. You can e-mail her at <a data-cke-saved-href="mailto:wornock@mac.com" href="mailto:wornock@mac.com">wornock@mac.com</a>. Right now, Tanja’s parents will be doing nights during the weekdays but not Saturday and Sunday night (they are sleeping in our apartment during the day). There will be a need for people some during the day as I’m not sure how long we can continue to go 8:00am - 10:00pm without getting a way for a few hours every now and then.

FINANCES: Many of you have asked about our financial needs. Right now, we do not yet know exactly what, minus our $1,000 deductible, our international insurance is covering. We know of other programs to possibly help. Our greatest need is just in our regular support. We’ve lost about 1/3 of our support over the past year. You can send support to us this by sending checks to: First Asia Development, P.O. Box 8668, Fayetteville, AR 72703. If you’d like to just set up an auto-draft, you can do that as well, just call Karen Mason at 479.527.6424 or e-mail her at karen@newheightsfamily.com. Also, you can give online by going to:

http://theshackfamily.com/give/

Regarding visiting, here is the information I sent yesterday.

FOR THOSE WHO DESIRE TO VISIT: please know that we are so thankful for your willingness to come by but we ask for your mercy and patience. We are unable to see or spend time with everyone who comes as we are busy attending to Robbie. Also, unless we ask you to stay, we ask that you keep your visit fairly short as it can be stressful for Robbie to deal with visitors and more stimulation than needed. Thank you for your understanding. Also, if you call, we may not be able to answer but will appreciate your voicemail message.&nbsp;

VISITING FROM FAYETTEVILLE? From time to time, we need something brought from our place in Fayetteville. So, if you are coming from there, check with the New Heights Office - 479.527.6424 - and someone there might know of something we need.

Thank you all. Your continued support of us is a blessing in so very many ways.

Ken & Tanja

Update #11 - New Year's Day 2009

"At the same time, the Spirit also helps us in our weakness, because we don’t know how to pray for what we need. But the Spirit intercedes along with our groans that cannot be expressed in words. The one who searches our hearts know what the Spirit has in mind. The Spirit intercedes for God’s people the way God wants him to."

- Romans 8:26-27

Right now, we don’t even know what to say or ask prayers for. The above verse comforts us because there are times I am able to pray nothing but tears, groans and cries of “Oh God, be with my son, heal my son” over and over and over again.

He did not sleep much last night. His spasms are hard and continual. He is unable to communicate other than reaching out with his right hand to touch my face when I ask him to. His left arm is unable to do anything but be draw up tight next to his body. We can’t even stretch it out during his brief times of relaxation. We don’t know if he is getting better, worse, or staying the same. We feel we know nothing at all.

God knows.

It is our prayer that 2009 will be a year beginning with miracles. The miracle of hearing our son speak, seeing him eat food, do school work, throw a football, ride his wave board with perfect balance.

Thank you for joining in prayer with us.

With love,

Ken

Update #10 - New Year's Eve

Hello again. The last day of this year finds us still in the hospital. Robbie, we believe, is showing small incremental improvements. For those of us with him day in and day out, the improvements seem difficult to ascertain. For those who are away for a few days and then return, they are more noticeable. 

Yesterday, he slept from 3:30am - 9:30am and then again from 3:30pm until 10:30pm. Unfortunately for my brother Robbie and sister Becca, he did not sleep at all through the rest of the night. It is 10:30am and he has still not slept. He is doing his waves of spasms though not as intense as a few days ago and they seem to be more relegated to his legs, ankles and feet. He seems to be moving his mouth, lips and tongue better though he is still unable to communicate other than the tone of his moans and a few sign-language yeses and nos every now and then.

He took his IVIG well again (the 2nd and last one) yesterday and is now off of morphine completely. We have been blessed the last three days with a wonderful nurse, Jordan Yarbrough (sp?) who is a Harding grad. and knows Robbie and Mona from when she went to HUF.

As you might imagine, it takes its toll on us to hear our son continue to go through these waves of spasms and pain. We know we have been given amazing strength through all of your prayers and we thank you again.

PRAY FOR PERSEVERANCE FOR ALL WHO ARE SERVING ROBBIE AND PRAY THAT THE SPASMS WILL CEASE! Please continue to pray for a total healing and complete recovery.

The girls are in Searcy with family and are doing well, keep them in your prayers as well.

FOR THOSE WHO DESIRE TO VISIT: please know that we are so thankful for your willingness to come by but we ask for your mercy and patience. We are unable to see or spend time with everyone who comes as we are busy attending to Robbie. Also, unless we ask you to stay, we ask that you keep your visit fairly short as it can be stressful for Robbie to deal with visitors and more stimulation than needed. Thank you for your understanding. Also, if you call, we may not be able to answer but will appreciate your voicemail message. 

With love for all God’s family,

Ken and Tanja

Update #9 - Two Steps Forward, One Step Back...Again

Greetings and good morning,

It is 9:30am on Tuesday morning and our son has been sleeping since 3:30am - PRAISE GOD FOR REST!!

My brother Robbie said that, with the muscular workout he has been getting this past week, he could sleep for two days straight and it’d be good for him. I agree. We also had a good rest last night as my niece Sarah and her husband Justin watched Robbie. They are both nurses!  Right now my wife is beside me reading her Bible and my brother is across from me reading “Irresistible Revolution”. Yesterday was better. Of course, “better” is a relative term as he is still doing 30 - 40 second waves of spasms throughout the entire day. 

They started him on a new treatment yesterday evening, Immuno-Globulin, which can have some side effects such as rash, fever and head-aches. Before he got it, we prayed over him and the glass IV bottle it came in. They checked his vitals every 15 minutes while he began it and he has no visible side effects. The neuro doctor this morning said he has taken the IG better than any patient they’ve ever had. 

He is an amazing young boy. Even in his medicated state and the pain of his muscle seizures, he seeks to comfort and hug those around him. Thank you for your faithfulness in lifting this young man of God up to Jehovah Rafah. Yesterday, my Malaysian friend Philip said as he was praying for me, “God you are both loving and strong. You are NOT strong and without love and you are NOT loving without strength. You ARE loving and you ARE strong and able to do all things.” This is our God and we believe in him.

Bless you all, Ken

P.S. Well, he is awake and is really having a hard time again - pretty severe pain right now. Again, two steps forward, one step back. Keep praying. Thanks.

Most of the pictures of these early updates are from a time a couple of weeks later, after he started doing a little bit better.  (Emphasis on "little") 

Update #8 - God's Strength in Our Weakness

We realized that everyone at the hospital helping and serving us had never seen the vibrant, fun-loving, healthy Robbie.  They had only seen a weak, completely disabled, hurting and bed-fast boy dependant on them for everything.  We wanted them, in some small way, to know the boy we knew - the boy he had been just days earlier.  So we printed some pictures of him and Tanja made a poster of all the things he loves (present tense) to do.

We continue to thank you all for your perseverance in praying for our son and ask for you to continue to faithfully pray for him. Yesterday he woke up at 5am and did not sleep again until about 9:30pm. It was a long, long day of watching our son suffer. We continue to be thankful that his pain is under control more. I think yesterday may have been harder for Tanja and I than it was for Robbie. We are emptied out and in total reliance on God's strength in our weakness. Tanja was blessed by the help of her dear friend Amber yesterday (Amber is a nurse). We have had amazing nursing care since moving to 3C. One of the nurses on this wing is Teague Houseman. Teague was in my youth group in Walnut Creek, CA when I served there. Amber, by the way, was in my youth group when I ministered in Lodi, CA!

We had another night away as my brother Robbie and brother-in-law Shawn took the reins and stayed the night with him…a fairly good night though without a long stretch of sleep - his longest last night was just under three hours. Tanja and I were refreshed by some rest after we prayed and wept until finally falling to sleep.

Today looks to be similar to yesterday though his waves of seizures seem to be a bit less intense. He is also showing small signs of improvement such as the ability to chomp on ice chips that we give him. His breathing sounds much improved as well. He is responding to us a bit more and we have been able to keep his morphine quite low.

PRAISE BE TO GOD FOR EVERY IMPROVEMENT, NO MATTER HOW SMALL. We are well aware that he could very well have a long road ahead and we are striving to prepare our hearts for that while at the same time praying for a complete and miraculous healing. We will be with all of my family for lunch today while Amber and Tanja's parents help with Robbie.

With love to you all,

Ken

Update #7 - Still I Will Say...

Robbie with "Oma" - Tanja's mother Sonja Wilks

It has been a week of updates and a week and two days in the hospital. Yesterday was a blessed respite from the chaos, turmoil and heartache of the 72 hours before. After the MRI two nights ago, they raised Robbie’s meds significantly and he rested well (off and on) for about 3 hours, then 4 hours. During the day yesterday they became concerned with his breathing and began lowering his meds some. This has kept him from the intense pain but it is also keeping him from sleeping much. He only got about 3 and a half hours last night. When he is “awake”, though not completely conscious of his surroundings, he goes in about 30 - 45 second waves which include 15 - 20 seconds of peace, then 15 - 20 seconds of discomfort and pain.

PRAY FOR REST FOR ROBBIE AND FOR THE SWELLING TO GO DOWN IN HIS BRAIN.

Last night, Robbie was moved from Neurology to Step-down which is one “step-down” from I.C.U. - a one nurse to one patient ratio in order to monitor his breathing more. He is now in 3C4. We were so blessed to have Tanja’s father Larry, sister Heidi and her husband J.P. Wornock come for the night last night. J.P. has been Robbie’s primary care physician for many years so how awesome is it to have his doctor stay all night with him and not charge a cent!

We want you all to know that we believe your prayers are in effect even though the news is not all that good. Our faith in the Father is stronger than ever right now and we feel a sweet communion with His Spirit as we work with Robbie, pray, weep, hold him, hold each other, visit with those who come by. We pray for all of you praying for us, that your faith will be strong in our time of need. God IS good. 

My thoughts have recently turned to the words of a favorite song:

Blessed be your name in a land that is plentiful

Where your streams of abundance flows, blessed be your name.

Blessed be your name when I’m found in the desert place

Though I walk through the wilderness, blessed be your name.

Every blessing You pour out I’ll turn back to praise

When the darkness closes in, Lord, STILL I WILL SAY...

Blessed be the name of the Lord, blessed be your name.

Blessed be the name of the Lord, blessed be your glorious name.

Blessed be your name, when the sun’s shining down on me,

When the world’s all as it should be, blessed be your name.

Blessed be your name on a road marked with suffering,

Though there’s pain in the offering, blessed be your name.

You give and take away, You give and take away

My heart will choose to say, Blessed be Your name.

I would ask that all of you who are praying for Robbie spend some time just thanking the Lord for His goodness. He has promised to never give us more than we can bear. What a strong boy our child must be!

With love in our hearts for all of you.

Ken & Tanja

Update #6 - Pain-wracked and sweat-soaked

Robbie with his sister Bethany (left) and his Wornock cousins, Abby & Katie (right)

God’s blessings to you all. I’m sitting in Robbie’s room in Neuro next to my sister Donna and brother-in-law Carter. Robbie is resting and the room is quiet with the soft whispered prayers of two New Heights prayer warriors on their knees next to his bed. 

Yesterday was by far the worst day we’ve had. The enemy and father of chaos was undoubtably at work as Tanja and I along with at least two other family members wrestled with a pain racked young boy throughout the day. His pain caused him to desperately seek relief from any and everything that was causing him discomfort including trying to rip out feeding tubes and IVs. He was literally out of his mind in pain. We have been so blessed with great nurses with the notable exception being yesterday. Our nurse was lethargic, clueless and just plain lazy and the whole nursing team wasn’t helping us much. 

We asked for a doctor in the late afternoon because we knew something was not right. They just could not let a boy be in this much pain for this long (72 hours). After almost three hours of not seeing a doctor after asking, my brother-in-law Cater went out a got in their face a little bit. Throughout this time I was drenched in sweat and Robbie’s urine working my very hardest to help him without hurting him. Finally Tanja just “lost it” and went into the hall screaming and weeping and begging for some help. As you can imagine, that got their attention. 

We found out soon thereafter that they had entered in the wrong doctor contact information for Robbie. The right doctor had called in to correct the wrong entry and they entered in the wrong information again. On top of that, earlier in the day the nurse had taken blood using the IV tube. It never looked right after that and we, 3 or 4 times, asked him about it. He just blew us off and said, “Oh, it’s fine, don’t worry about it” but he never tried to flush it to see if it was. Well, after Tanja’s episode, the head nursing coordinator came in and immediately said, “His IV is not good”, and they checked it and it wasn’t, so it is entirely possible that he was not getting the meds he was supposed to throughout the day. When the correct doctor was finally contacted, she was visibly upset by everything. We know our battle is not against flesh and blood so we hold no ill-will or unforgiveness towards these workers but we are thankful that they are keeping on top of things now. 

He had a second MRI last night and the swelling in his brain has not gone down but it has not increased which is very good news. His spine looks fine which is also good news. His night and his day today has been much better. Yesterday, I asked for prayers simply for relief from pain and today these prayers of yours are being answered. We pray the worst is over and ask you to join us in that. Pray for the swelling to go down. Pray for emotional strength for Tanja and I and for continued faith in Jehovah Rafah, the God who heals. Pray for our girls and for strength for our extended family who are helping so diligently. This was to be the second day of our big family reunion but instead, our family is reuniting around us.

Bless you, bless you, bless you for the genuine God-given love that you have for my beloved son.

Because of His grace,

Ken

Update #5 - Worst Christmas Ever

Well, we made it through Christmas and it was hands down our worst Christmas ever. I wish I could give all of you prayer warriors some good news, but every waking moment for Robbie is a moment of intense pain. They’ve increased morphine and valium to the max as well as other drugs trying to relieve him. Sometimes it is keeping him asleep longer, which is good as that is his only relief. He is certainly getting stronger as he, not necessarily in his right mind, is fighting against us sometimes in a desperate attempt to move or do something to get relief. It is taking four of us to deal with him now. 

PRAY FOR RELIEF FROM PAIN!

He would try to open a Christmas gift but would seize up in pain before he could finish unwrapping. He is being so brave and loving. When his obvious pain overwhelms us a we begin crying in front of him, he will stop fighting the pain in order to reach out and hug us reassuringly. He is hugging a lot.

We are grateful for our family being able to be around. My sister Becca, brother Robbie and Tanja’s parents stayed with him through the night last night so we could get some much needed rest.

We have just talked to a pain specialist and they are going try a few different things to try to relieve him. He is on steroids now in an attempt to support his little body’s fight against this virus in his brain and help the swelling to go down.

We cannot express the gratefulness we have that people all around the world are lifting our son up. Please continue to pray for our girls as well and, of course, pray for Tanja and I. We need strength from the Giver of all things. 

God bless you all,

Kenneth

Update #4 - Christmas Day

Good morning and merry Christmas.

We continue to be thankful for your prayers and plead for more. He had a long rough day yesterday and an even worse night. The only time he is getting relief is when he is in a drug-induced rest. Last night he slept for maybe three hours one hour at a time. The rest of the time he was writhing in pain. The cramps are seizing him from neck to toes now. His back and hips are especially painful and sometime he arches back so hard only his head and feet are on the bed.

As I'm sure you know, we hurt with him. We haven't slept because we are usually just weeping together in the time he is sleeping.

We are so thankful for everyone who has come by - especially the group of 12 who drove all the way down from Fayetteville and covered us all in their faith-filled prayers. We are especially thankful that yesterday evening he had about 30 - 40 minutes of mostly pain-free awake time so that we could open some presents with his sisters.

His sisters wanted to be with him all day yesterday and we made the mistake of letting them. I think they are on emotional overload after seeing him in pain and not being able to do anything.

Through all of this we know God is good and He is faithful and we put our trust in Him. We give these great doctors and nurses here our thanks and appreciation but we give God all the glory. We hope and believe He will bring relief and healing to our son.

Because of His grace,

Ken