Update #42 - "Pink Panties"

These last few days have lifted our spirits beyond words. As encouraging as it is to see Robbie improving in abilities such as speech and movement, it is a far greater blessing to see how he is being encouraged. Up until today, we have still had an hour or two of difficulties that are most likely withdrawal related. Today, we did not even have that.

Yesterday was a day full of blessed memories. Robbie had good therapies and was especially excited to show his speech therapist his newfound “voice”. Every word he speaks is a beautiful sound, even though it is full of difficulty, sounds pained and slow, and is hard to understand. That evening he was blessed to have a visit from a beautiful golden retriever and he just loved every moment. This is part of Ark. Children’s “Animal Therapy” and I can’t imagine any patient enjoying “Cooper” more than Robbie (see attached pics). 

I didn’t think the day could get any better but then his Uncle Carter showed up and it wasn’t long before Robbie said “Pah-eeeeennngk Pah-annntheeehhs” and everyone in the room clearly understood “Pink Panties”. Carter was laughing so hard he turned beet red and I thought Robbie was going to roll over the bed guards onto the floor he was rolling around laughing and laughing and saying “ha, ha, ha” and laughing some more. For those of you who missed my update a few days ago. His Uncle Carter said that when Robbie can say “Pink Panties”, he’ll be so excited he’ll wear some.

Well, we had some ready for him and Robbie’s Uncle Carter was true to his word. He put on some big ol’ pink panties (over his pants, thankfully) and Robbie got into a wheel chair, as agreed, and Carter walked him all the way down to first floor and out the front door with a chorus of laughter every step of the way. Tanja and I, Shelby and Bethany, my sister Becca (Carter’s, ...um, proud wife), Oma and Opa (Tanja’s parents), all of Robbie’s caretakers and many others got to enjoy seeing a young boy in a wheel chair who, though he has endured nearly two months of unbelievable pain, massive uncertainty and tragic disability, just couldn’t stop smiling from ear to ear.

Besides “Mom” and “Dad”, the words he works on the hardest are “Praise God”. Is it okay to praise God for an uncle who wears pink panties? Robbie thinks so, and he did many times. Today, Robbie continued to work his hardest on the words “God, Jesus, Holy Spirit.” He is still unable to make an “s” sound which frustrates him because he wants to say his sister Shelby’s name. 72 hours ago, just suggesting that he should practice trying to say something caused him to cry in frustration because he knew he couldn’t. 

Thank you healer God.

PLEASE PRAY THAT HIS ANKLES, FEET AND TOES BEGIN TO RELAX. Even with the botox shots he received, nothing much has changed with his ankles and toes. This makes it incredibly painful to stand for even a minute and impossible for him to walk. God is listening to this army of prayer warriors. He is listening.

Thank you, again, for praying and we pray that you can share in the joy the God has blessed us with these past few days.

Grace and peace,

Ken and Tanja

P.S. - oh yes, there WILL be a “pink panty” video on its way. :-)

Update #41 - "Dad"

“DAD” ROBBIE UPDATE 41 - 2/5/2009

Yesterday, I heard my son say “dad” for the first time in almost two months! It was long and slow and the “d”s sounded a bit like “n”s but it was the most beautiful sound I’ve heard in a long, long time.

He had his best night of rest the night before last, sleeping from 10pm to 10:30am with only a couple of waking moments to “outpee”. He had another good day of improvement yesterday. In the pool, he was able to move his limbs fast enough to make a splash and enjoyed trying to splash his sisters who were sitting next to the pool. He had another very difficult two to three hours of “hurts all over” and itching which seems to be continued withdrawals from his meds as we try to pull some of them. We had a “prayer warrior” with us at the time and he asked us all to anoint him, pray, sing and, even in the middle of all his pain, read scripture over him. He asked for a story about Paul.

PLEASE PRAY THAT ROBBIE WILL BE HEALED OF THE NEGATIVE SIDE-EFFECTS AND/OR WITHDRAWALS FROM HIS MEDICATIONS.

When he finally began settling down from that, he was moving around and looking great and enjoying a movie with his sisters. His Uncle Carter, whose goal is to make Robbie laugh every day, came in and began his always-successful attempts to get a laugh out of Robbie. I started encouraging Robbie to try to make the “p” sound. Why? Carter told him a few days ago that the first time he can say “pink panties”, his Uncle Carter will wear some in celebration. :-)

Robbie started trying to talk. Every time he has tried before, he would begin to try and then get so upset (because he was unable to) that he would get overwhelmed with agitation. Sometimes, just the effort of making a simples sound would cause his muscles to seize up. Well, yesterday evening was definitely a breakthrough in that. He started trying to make every sound he could think of that included the vowel and consonant sounds he was able to do: “Dad, mom, Beth, hi, yo, mamaw, oma” and so on. There wasn’t a dry eye in the room. Even our med-tech and nurse started getting teary eyed - they both said “Praise God” as well - they all know of Robbie’s faith around here. Everyone who came in to the room heard him try to say their name and started crying as well, “Oma, Opa, Becca”. We even called my mom so he could say “Mamaw”. Before leaving that evening, he hugged us and slowly and aggressively said, “Aaahh Llluuhh Oooo”. He said “I love you” to his mom, dad, and both sisters. And, of course, he continued to sign “Thank you God” throughout.

It was a sweet time even with the knowledge that there is a road ahead. We pray the road is shorter than the “experts” might have guessed . . . all to the glory of God.

Thank you, thank you, thank you for your prayers.

Ken

Update #40 - i a-m n-o-t a-f-r-a-i-d

A couple of hours after I sent out the last update (two evenings ago), Robbie had a very, very hard evening. He was experiencing itching on every part of his body - he said it itches so bad it hurts and was constantly just writhing in the bed. He also became flushed with red splotches all over and his face was bright red. He was panting like a dog who had finished a long run. In the midst of his severe agitation he asked for us to anoint him and pray for him. He again wrote out, “A-M I G-O-I-N-G T-O D-I-E-?” And Tanja and I again responded with all the assurances we could give him, saying things like “No, no, you are getting better, this is probably a withdrawal from your meds or the brain reconnecting with some nerves but it is part of you getting better.” ...and so on. It was when I said, “You don’t need to be afraid” that he started getting upset even more than he was and began spelling on the board very passionately, almost hitting the board with each letter for emphasis:

“I A-M N-O-T A-F-R-A-I-D”

Understand, the pain that he was in made it extremely difficult for him to stop writhing long enough to spell an entire sentence out but he forced himself to continue spelling:

“I K-N-O-W I’-M G-O-I-N-G T-O H-E-A-V-E-N W-I-T-H G-O-D.”

He then spelled:

“D-O Y-O-U K-N-O-W-?”

Yes, we do know and what a blessing to know we will have every tear wiped away. He was somewhat belatedly given some meds to help with it but started getting better shortly before those meds took effect. We have a wonderful Doctor and she left her home to return to the hospital to check on Robbie. He was already much better when she got there, but we of course shared our thankfulness to Dr. Stefans. After she walked out, Robbie was very adamantly spelling,

“G-O-D M-A-D-E M-E B-E-T-T-E-R, N-O-T T-H-E D-R. A-N-D N-O-T T-H-E M-E-D-S.”

The rest of the evening, every time we commented on our relief that he was better, he would spell again and again:

“G-O-D N-O-T M-E-D-S” :-)

He just has a deep desire for people to know it is God who is making him better. Sometimes, we wish all these prayers going up for Robbie would result in a show of God’s healing power and that there would be a dramatic and obviously miraculous healing. In our limited thinking, we say, “What a powerful testimony to those working with him and those praying for him. Surely, God, you want that.” 

I do believe God has healed Robbie but, more importantly, I see clearly that He is building a faith in Robbie that will result in a much more powerful long term result in the Kingdom of God than any shortcut healing would. That being said, I STILL ask that you pray that Robbie be brought to full recovery RIGHT NOW in the name of Jesus and for His glory alone. 

Robbie had a decent day physically yesterday but a hard day emotionally. He has moments of just being plain “M-A-D” at having to be in a bed, be in the hospital...the list goes on. Those moments filled a lot of the day yesterday as he just didn’t feel like doing the few things he is able to do now, like get in a wheel chair and go downstairs for a little while before he hurts from being in the wheel chair too much. 

PLEASE PRAY THAT HE FEELS GOOD ENOUGH TO GET OUT OF HIS ROOM SOME AND PRAY THAT HE WON’T SUFFER WITHDRAWALS FROM THESE MEDICATIONS.

And be sure to join us in thanking God for every bit of improvement that we continue to see in our son. Though the improvements are small, His love is BIG.

Grace and peace, Ken

P.S. Many of you have commented about his “spell board”. I thought you might be interested in seeing the new and improved version I just made for him (attached).

Update #39 - The SIGN for "Thank You, God"

Robbie continues to make small incremental steps of improvement in what he is able to do physically and giant leaps of growth in his faith. Every day, he asks for me (and whoever else is in the room, including his sisters) to anoint him with oil and pray healing over him. He usually follows that up with by signing, over and over again, “thank you God”, “thank you God” and then asks us to sing some praise songs. Robbie’s sign for “thank you God” is bringing one curled up hand to his mouth, moving it to his other hand and then lifting it up to heaven. The picture of my son doing this is firmly embedded in my mind. I doubt it will ever drift from my memory.

I have great hopes for him this week and pray that he continues to have good therapy sessions.

We enjoyed having our girls with us this past weekend. They had a good time last week in Fayetteville as they got stuck with their host families in the ice storm. Robbie loves having his sisters around and we are hoping to be able to have them more now that Robbie is doing a little better. Attached is a picture of us going down and getting some cappuccinos together (Robbie, being a true Shackelford, loves his coffee). The girl’s time with us was good but hard as well. They were able to share their struggles some and “release” some of their pent-up emotions.

PRAY FOR OUR GIRLS DURING THIS TIME OF BEING PASSED AROUND FROM PLACE TO PLACE. We are a family that has always loved being together and that is one of the more difficult things we are having to deal with. We’ve not really been “home” since leaving our place and most of our stuff in China in October. It now looks like this transitional time will be even longer. Fayetteville is always a home for us as well and we look forward to the time we are able to leave the hospital, though that may still be several weeks.

PRAY FOR WISDOM WITH REGARDS TO ROBBIE’S MEDICATIONS. Our biggest nightmare situation since we’ve been here was when he had withdrawals from one of his meds. We hope this is the week we can start pulling off of some of them but we are wary of it at the same time (his list of medications is more than a page long).

His spasms have mostly come to an end right now with the exception of his thigh muscles seizing up lightly throughout the day. We are thankful for answered prayers and pray this will allow him to make it through his therapies better.

Again, we thank you for your steadfast prayers and ask that you please continue to pray - we still have a long way to go unless God should choose to give us a shortcut.

Grace and peace,

Ken

Update #38 - "ANGEL ONE" Helicopter

Greetings,

Tomorrow will be six weeks with Robbie in the hospital. For over 40 days, we have experienced fleeting peace when Robbie is able to sleep. Every day these past several weeks, the familiar sign that he was waking up was a long stretched-out moan of pain and discomfort. Though I have desired for him to be wakeful, every time I would sit by the bedside as he slept, I admit I dreaded having him wake up because it meant seeing him in yet more pain.

I share all that in order to tell you how amazingly sweet this morning was. He had a fairly good night of sleep for Tanja’s parents and was asleep when we arrived. Tanja had stepped out and I was beside my sleeping boy. One of the med techs walked in to take his blood pressure. I got the cuff off of the side of the bed and lifted his leg. When I looked at Robbie, he opened his eyes and had a big smile on his face. He wrote “I W-A-S F-A-K-I-N-G” (He was just pretending to be asleep). As I write this, I can still picture that beautiful smile.

Thankfully, he followed that smile up with a fairly good day. We have had two days in a row where one of his two physical therapies is in the pool, which he has enjoyed and usually has an easier time relaxing a bit afterwards (see attached picture). Our therapists here have been great and Robbie is really blessed with their patience, steadfastness and understanding of his needs. The Child Life associate on our floor blessed us today as well by arranging a trip with Robbie up to the helipad to have a private up-close showing by one of the pilots of the “Angel One” helicopter.

My boy cannot speak, eat, stand, or walk. He has trouble sitting up without falling to one side of his bed or the other. He cannot grab hold of things with his hands and struggles to move much at all. He continues to be in pain most of his waking hours. And yet, in the midst of all this, God is able to bless us with a pretty good day. A few nights ago, he spelled out “W-H-Y M-E-?”. That is a question that I doubt we’ll ever be able to answer this side of Jesus’ victorious return. I do know this with regards to what is happening now - what the enemy intends for evil, God WILL turn to good.

Thank you for your prayers. PLEASE PRAY THAT HIS THIGH MUSCLES WILL RELAX. They just continue to plague him with pain even on his “good days”.

Grace and peace,

Ken

Update #37 - Silent Hour

Natalee, who I went to high school with and who is organizing the Valentine Card's for Robbie [in the update below] has two sons Robbie's age. I heard an amazing story about these boys (I heard of this story 3rd or 4th-hand so forgive me if the details are a bit off). 

Natalee's boys are 11 and 12 years old and have been praying for Robbie along with the whole family. They recently decided that, since Robbie was unable to talk, they would spend one hour each day in silence and pray for Robbie silently every time they wanted to talk. 

I continue to be so humbled and so blessed to see how the Father is moving on the hearts of children for our child. I am uploading a picture of Robbie’s “spelling-board” that he uses to communicate with us. [just click on "photos" above] 

Should you feel led to follow the example of Natalie’s sons, feel free to print this board out and use it when you need to silently communicate something. It might help you feel a bit of Robbie’s burden as you pray for him. 

PRAY FOR IMPROVEMENT IN SPEECH - so much of his frustration comes from miscommunication. 

Bless you all, 

Ken

BTW - I know they have electronic gadgets to use that are fancier than a clip-board but this is what we've found works best (his lack of fine motor skills don't allow him to push buttons right now).

Update #36 - Plans for V-day

A friend on Robbie's Facebook prayer group wrote this, I thought I would copy it here:

Post #1:  Natalee Howe wrote on January 27, 2009 at 9:08am:

Having 11 and 12-year-old boys, I'm aware of how something tangible is more meaningful and realistic than an abstract number or idea at this age. So, I was thinking that if LOTS of us and our children would make and send Valentines to Robbie, then he would have some concrete measure of just how many people are out there praying for him and lifting him up to our Father. Heidi said this would be a great project to encourage him at this stage in his rehab. We need to send the Valentines to her at:

Robbie Shackelford

c/o Heidi Wornock

42 Jamestown Dr.

Searcy, AR 72143

In the discussion board another asked:

Andrea G Branch (Fayetteville, AR) wroteon January 27, 2009 at 9:44am:

what are some topics of interests of Robbie's? favorites, etc. colors, characters, hobbies, books, etc...

And then his Aunt answered:

Heidi C. Wornock (Little Rock, AR) wrote23 hours ago

Robbie's interests:

airplanes (he wants to be a pilot)

helicopters

Legos

Space, Stars, Planets

Robots

Football

Frogs

Star Wars

Webkinz

Reptiles (He wants a pet snake and likes lizards, geckos)

Anything having to do with China/Tibet

He likes "jokes & riddles"

He likes the colors orange, green, blue and black

Also, please remember NO CANDY or ANY References to food or candy.

Update #35 - Christmas?!?

The hospital put new calendars in every room today. I guess they are running a little behind on things like that. Robbie suddenly realized that Christmas had passed him by and became very emotional again. We shared with him about the very, very hard days he had during that time and that we were actually praying that he would not remember it. Well, he does not remember Christmas, even though God blessed him with about a one hour reprieve from his pain that gave him time to open some presents with his mom and dad, his sisters and his Uncle Robbie. That was the last time he was somewhat cognizant of his surroundings until several days after the new year. We are thankful that he does not remember the nightmare that he endured during those times. It is also a good reminder to me that he is much better now than he was then.

Update #34 - I Hate this Bed

Our son has now been in a bed in a hospital for 40 days. This may explain why, the last few days, he continues to spell out “I H-A-T-E T-H-I-S B-E-D”. We have had 3 or 4 days of not seeing any improvement with him and I know he knows this as well. He has become extremely frustrated and, at some times, angry. In a desire to be transparent, I need to say that I have struggled with anger myself the last few days which is an emotion my laid-back nature never had to struggle with much.

PRAY FOR GOD TO BLESS ROBBIE WITH AT LEAST SOME SIGN OF IMPROVEMENT EACH DAY. Pray against anger and frustration and for God’s Spirit to bring a special anointing of His peace on Robbie and all of us who minister to him. Pray for garments of praise to replace a spirit of heaviness. Pray for healing.

My brother-in-law, JP Wornock, was trying to describe where we are in this process right now. He said it is like you prepared yourself for a marathon and have been running, running, running and you’ve done the 26+ miles but the finish line looks further away than when you started and there is still a lot of running to do. We are completely depleted of any strength we might have called our own and can hold on to nothing but God, though it is really Him holding on to us.

He slept very little last night, 3 1/2 hours, and several times spelled, “I H-U-R-T A-L-L O-V-E-R.” He will hopefully get his central line (IV) out today and this will enable him to do pool therapy and even get in a hot tub which I think might bring him some relief.

For those of you who have been praying for him from the start, I know it has been a marathon for you as well and we appreciate your continued faithfulness and steadfast prayers.

Grace and peace, 

Ken

Update #33 - Praising Through the Pain

Our son had a better evening though still with continual discomfort and muscle spasms. He is sleeping-in on this Sunday morning and probably needs it. They are giving him a day off of his therapies so maybe this will be a day of rest. 

You may remember a story I shared in a past update about a boy who wanted to have a birthday party where people brought money for Robbie instead of gifts. That story was a bit inaccurate. It was not A boy, it was TWIN BOYS Robbie’s age. Well, they had their party and then the family came up yesterday and visited us bringing an envelope of $250 in it along with cards they had made. Their younger twin sisters also made cards and gave him a stuffed animal as well.

When Robbie first heard about the generosity of these boys, he was so touched he wept and spelled out “God bless them”. He was even more touched by their visit. The boys were great as they told Robbie they hope he gets better. The mom said that all of their friends were very excited to be able to help as well and the birthday party was a lot of fun.

After they left Robbie just wept again and wanted Tanja and I to get close and spend some time in prayer together. He kept signing “Thank you” then spelling G-O-D over and over again. He then wanted to sing some praise songs which we did for quite some time. It is difficult to sing without getting choked up as I look at my son lifting his arms in praise and refusing to let them go down even though I can tell his muscles are seizing up. I see the pain streaking across his face and yet he was looking up with a smile on his face, making the moaning sounds of praise as best as his disabled vocal chords could make. I told him that God is smiling down on his beautiful, beautiful offering. 

I remember in High School football when we were sore from the first day of “full contact”. The next few days we were encouraged to keep “playing through the pain” until we were toughened up enough not to hurt anymore. I wonder what our Father thinks as Robbie, without any prodding from us, is stubbornly and steadfastly praising through the pain.

Lord, please heal your child. He is obviously yours.

Thank you for reading these updates and, if they touch you and you begin to feel some of Robbie’s burden, I ask that you keep “praying through the pain”.

Blessings,

Ken

Update #32 - One Thing Good

Hello to all. Each day I have a deep desire in these updates to give you some good news. I guess one thing that has been good these past few days is that he is sleeping better through the night. Other than that, in the daytime he has regressed significantly in what he is able to do and his spasms have been non-stop again and painful. PT, OT, and ST have all pulled back a lot on what they are trying to do with him because he is just in too much pain. Our son does not have one comfortable waking hour in his day - not one.

They are going to start him on some steroids again because they are concerned the swelling in his brain may be increasing again instead of decreasing. As you can imagine, we are discouraged. We still put our trust in the One Great Physician and we lay our son at his feet.

PRAY FOR THE SWELLING TO GO AWAY ONCE AND FOR ALL AND FOR ALL SPASMS TO COME TO AN ABRUPT END.

Robbie continues to be a trooper but it is wearing him down and Tanja and I are well-worn as well. My wife has been more than amazing throughout. The strength of the Lord is evident within her with everything she does for our son, for me, for those around us. 

Our daughters are up in Fayetteville this weekend and I pray that they are having a good and refreshing time with friends and their church family. 

We continue to be blessed in the knowledge that he is covered in prayer all over this world - from San Francisco to South Africa, from Tanzania to Tibet. When my father was Robbie’s age, he lived in Leede, Oklahoma. It has been a good half-century plus since then but he just got a call from the son of his barber when he was a kid. Seems a lady in Fayetteville told a friend in Bartlesville about Robbie. She e-mailed an acquaintance in Wisconsin who shared with another friend in Tulsa who was in a prayer meeting with the wife of this man who called. Amazing. May God bless the faithful prayers of those of you who have been made righteous by the blood of Jesus Christ.

- Ken

Update #31 - Who We Are

Greetings, I have had several people suggest that we send an update letting people know who we are and what our family does as well as a more detailed update on Robbie’s current medical condition. The people who are suggesting this know us well but also know that these updates are getting forwarded to many, many people who don’t know us. Of the 2,500 people in Robbie’s Facebook prayer site alone, I think I only know about 500 of them!

SHACKELFORD FAMILY:

Tanja and I have been married almost 20 years. We have three children. Shelby is a vibrant joyful outgoing 15-year-old girl who loves the Lord and wants everyone to know him. Bethany is our gentle and creative 12-year-old girl whose sweet-spirit spreads God’s peace and calm with whomever she is with. Robbie probably needs no introduction to those who read these updates, but he has been our active fun-loving 11-year-old boy who loves righteousness and whose mind is always thinking about 100 different things at once. 

My family has happily lived a somewhat nomadic life as God has called us into ministry in different places in California and Arkansas. Most recently we were blessed to be involved in a young church plant in Northwest Arkansas - New Heights Church. God poured His hand of blessing over New Heights and it has grown from a few families to around 1,500 in the past 7 years. This time was truly a ministry dream-come-true but, in the church’s fourth year of existence, we received a surprisingly clear calling to live and work among an unreached people group in a remote part of Asia. With the blessing of our leaders at New Heights, we left in 2007 to live and work among these materially and spiritually impoverished peoples. We have been back in the states since October to help build up and train a team to join us over there.

ROBBIE’S ILLNESS:

Robbie first became ill in early December and had what looked like a light flu, then something similar to hand, foot & mouth disease, then something like mono, tired and lethargic. One afternoon, he woke up from a nap and was hurting all over and struggled to speak and retain liquid in his mouth. That is when we rushed him to Arkansas Children’s hospital. Five weeks later, we are still here.

Robbie has had swelling in the inner part of his brain, around the baso-ganglia which controls motor-skills. He basically has some type of encephalitis or something very similar though they still do not know exactly what. They believe it is NOT bacterial but viral, though they don’t really know the cause. They were first focused on two main things: 1) relieving his pain and spasms which racked his entire body unceasingly & 2) supporting the bodies fight against this virus and swelling. He spent almost two weeks totally racked with pain every waking moment, some days the pain, cramps and spasms were from head to toe.

He now has his pain MUCH more under control though he still has long hard days. We believe the body is winning this fight and he is now in rehab. The struggle is to try to find the right balance of meds (keeping him out of pain and relaxing his spasms) while still keeping him awake and alert enough so that he can do a rigorous regimen of speech therapy, occupational therapy and physical therapy.

Because of the lack of significant progress of tongue movement and ability to eat and drink, he had a feeding tube surgically inserted into his stomach. This allows for less annoyance in his nose and throat and more mobility for his other therapies. He can come home with this tube and we can actually feed him ourselves though we pray that his ability to eat comes soon. Our whole family has committed to not eating mexican food until he can eat with us! 

He is still unable to stand without assistance and is in much pain when he stands or walks. He can move himself around better. He struggles with straightening out his hands to grab things or point (they are almost always curled up in a fist) and can not twist his arms around palm up. Likewise, his feet are pointed down, toes curled tightly and he is unable to touch his heels to the ground while trying to stand. He also struggles to sit up and is unable to support his head for more than a few seconds.

We just had a conference this morning with our doctors, nurses and therapy team. They feel that he has a least a few weeks more in the hospital and then a potential long road ahead of therapy - speech, physical and occupational. We are not surprised to hear this but are also praying that God moves and blows their estimates to shambles.

Thank you for all your prayers and support. We are still asking for no unscheduled visitors at this point so our energies can be spent helping Robbie focus his energies on therapy, recovery and rest.

God bless you,

Ken and Tanja

Update #30 - "Mr. Thankful"

Robbie amazes us every day. In the midst of his suffering and pain, he continues, in sign language, to say “thank you” to everyone for everything. He says “thank you” to his mom and dad probably 20 times in a one-hour period as we rub him wherever the next spasm hits. He says thank you to the nurse when she gives him meds or food. He says thank you to every doctor, and there are many. He even says thank you to the PT people after they make him stand for so long he is literally weeping and screaming. Many who have been around him have begun calling him “Mr. Thankful”.

Many times during the day we tell him, “Robbie, we love you and know you are thankful, you don’t have to say it.” The problem, and he knows it well, is that the very act of signing “Thank you” causes his biceps to seize up and hurt him - but he does it anyway. How many parents are trying to keep their kids from being too thankful? Have you ever heard of such a thing?

When his spasms keep him and Tanja’s parents up through most of the night, he spells out “I’m sorry”. When we have trouble reading what he spells out to the point that he gets frustrated and we have to calm him down, he spells “I’m sorry.” When he catches an expression of exhaustion or frustration on our faces (that we always try to hide from him), he spells “I’m sorry”. When he starts crying about his condition or missing home or missing friends and we have to spend time comforting him, he calms down and then spells, “I’m sorry.” It has gotten to where he begins “I - M - S...” and we stop him and say, no Robbie, you have no need to say “I’m sorry”.

He has been a real warrior in physical therapy. He knows there going to try to get him to stand or walk, which causes extreme pain, and he asks to do it and then tries to do more than they ask for. Pray that he can have the same attitude in speech therapy. He just gets so upset and frustrated when he can’t make even the simplest of sounds - ma ma ma or da da da - or when he is unable to move a little bit of food to the back of his mouth in order to swallow. PRAY THAT HIS TONGUE WILL BEGIN WORKING!

And, as always, please pray for a complete recovery and a thorough healing of every part of his body and that God do this quickly!

Thanks to all,

Ken and Tanja

Update #29 - The Blood of Jesus

...and I need it, oh I need it, the closer that I grow,

the more I come to know

how much I need the blood of Jesus.

...when it’s all you have, it’s all you’ll ever need.

In case you have not discovered this by now, writing these updates serves as a bit of therapy for me. It helps me to process the wide ranging emotions and thoughts I have as I serve a beautiful 11-year-old son who continues to spend his days with pain, discomfort and disability. The choice for me is to either sit down and write or go into a bathroom and pound my fists into a concrete wall which won’t do anyone any good (especially not my hands and I need them to help my boy).

Writing these updates is also a somewhat selfish act. I know how busy all of our lives are. Everything, even something like what is happening with Robbie, can get shoved out of our minds by the to-do lists, schedules and agendas of our ordinary days. I am desperate for the prayers of God’s people to continue even though this ordeal has lasted so long. The only way I can think of to keep them going strong and even growing is to keep these updates coming and pray that the Father continues to use them to bring His people to His throne on Robbie’s behalf.

My favorite singer/songwriter for the past several years has been a northern Christian folk singer named Andrew Peterson. The lyrics above come from the chorus of a song on his latest album. These words are something that have continued to rhythmically pulse through my mind non-stop for weeks. The song has ministered to me even though I don’t exactly know why. I just know that I agree with it. I know I need to trust God more. I know I need to be in His Word more and read it over my son. I know I need to pray in the faith and knowledge that Christ has already accomplished healing. I know a lot of things but right now all I have the strength to know is that I and my family need the blood of Jesus.

SO TODAY I JUST ASK THAT YOU PRAY THAT THE BLOOD OF JESUS POUR OVER MY SON. I don’t know all the implications of this prayer and the depths of healing that exist in His blood, but right now I feel it is all I have, and it is more than enough for my son’s needs at this time. On a practical note, PRAY THAT HE CAN SLEEP THROUGH THE NIGHT. He has gone several nights with very little sleep and he has too difficult a regimen of therapy to be lacking on sleep.

Thank you for any prayer you can muster for my boy.

Ken

Update #28 - Transfer to Rehab!

Greetings to all,

It has been a bit more than a month in the hospital with Robbie now. We had a good day Sunday and a very hard day yesterday that ended well. It is a bit humorous to say “good day” or “bad day”. Since it has been less than 40 days here, I can easily say that even our “good days” would make my top-40 list of “Hardest Days of My Life”.

The good news is that we have been moved up to the Rehab wing of the hospital (room 5D7). The hard news is that he will be doing a lot more rehab. The last few days, physical therapy has literally been a torture session. It is basically this - how long can he endure excruciating pain and how long can we endure hearing him scream. They are trying to get his feet to straighten out by getting him to stand and try to walk but it is terribly painful.

PLEASE PRAY THAT HIS FEET, ANKLES, AND CALVES WILL RELAX AND STRAIGHTEN OUT SO HE CAN STAND AND WALK WITHOUT PAIN. This will allow his P.T. to be much more endurable. Pray also for endurance and perseverance. 

My sister Donna and her husband Shawn brought the girls up and we were able to go out with them for a time yesterday. His spasms got really bad through the day and then finally settled down shortly after moving to the rehab room (we moved rooms twice). We were able to take him down to the play room where they had a beautiful black lab “therapy dog” and he just sat and petted that dog for probably 15 - 20 minutes.

He is moving around extremely well today compared to the past few days and we are so blessed to see every bit of extra movement. He is drinking well, eating popsicles and pudding and we soon hope to see him eating some more substantial food.

NOTE: If there is anyone out there who has time to help my daughter compile the lists of people and church families/ministries coming into the “praying4robbie” e-mail. You would basically need a computer and internet and we’ll let you know how to log in to the g-mail account and what we are trying to do. This is something that we thought we could do in our spare time but the response has been more than we can keep up with. We have family making an album for Robbie - a testimony to the goodness of God and His great big family.

I am sitting here in Robbie’s room and he is resting. I’m watching the inauguration proceedings and, at times like these, I am always in awe of the blessings God has poured over us in this country. Even in the midst of hard economic times, we are so blessed as we experience, once again, the peaceful transfer of power. I am also reminded that this world is not our home and that we are now citizens of a worldwide Kingdom of God’s people that will last forever.

God bless you and give you peace,

Ken

Update #27 - Making it Up?

Saturday was long and hard for Robbie and especially for us. We are trying to pull back on some of the meds that make him sleepy so he can be more awake for therapy. It ended up making for a really long afternoon of lots of spasms, pain and discomfort. It is hard to see his improvements be so small that you wonder if you are making it up The improvements are also so far from where we desire for them to be.

PLEASE PRAY THAT ROBBIE IMPROVES IN SOMETHING SIGNIFICANT ENOUGH TO ENCOURAGE HIM (AND US). ...and, of course, please join us in continuing to pray for complete and quick healing. Also, pray for strength and stamina for Tanja and I. We praise the Father for continued health through this time and ask that He continue to grant us the ability to be there for our son. We are also so thankful to the many family and friends who are coming to help us and give us breaks, especially Tanja’s parents who are taking the night shift 5 or 6 days each week. Please also pray for our girls who have no spent a month without us.

Many of you have shared many scriptures with us which is always a blessing. One friend shared this and it has really spoken to me. For those of you praying for Robbie, I’d like for you to meditate on this and pray over it for Robbie:

1 Peter 4:1-2 - So, since Christ suffered in the flesh, you also arm yourselves with the same attitude, because the one who has suffered in the flesh has finished with sin, in that he spends the rest of his time on earth concerned about the will of God and not human desires.

What a blessing that God may be using this time of suffering to set Robbie up for a life of amazing purity and focus on God’s will. We pray this is so - that what Satan intends for evil, God will turn to good. God bless you all and thank you for your perseverance in prayer for our son.

Ken and Tanja

Details RE: Visitors and Gifts

Greetings to all of you. This is a hard e-mail to write but we have to do what is best for Robbie right now.

PLEASE - NO UNSCHEDULED VISITORS RIGHT NOW. (Obviously, our close family is exempt from this request)

We are so very grateful for the love and concern that is being poured out over our son, over us and over our family right now. We have had friends, friends of friends, friends of friends of friends and then sometimes people who we can’t find a connection with come by.

Our needs right now is to really simplify the traffic going in and out of our son’s room and allow our focus to be on helping him do the work he needs to get better.

Robbie deeply desires to show appreciation and love to people who come. He wants to communicate with them and this can quickly overwhelm him (as well as overwhelm us as we try to help him). Also, when people come, Tanja and I then feel the need to show appreciation, answer their many questions, pray with them, etc. But doing that takes one of us away and creates a bigger burden on the other.

We have tried to ask visitors to just come just for short periods and share love and go but this is just not working. Again, know that we appreciate you wanting to come. 

If you would like to visit, please e-mail us, tell us who might visit and when. If you do not get a reply, please do not plan to come. We want him to have some strategically planned visits that we know will bless him and not overwhelm him but we, again, just have to simplify his life right now. If you are in the area, feel free to come by his room and write a note to him on a stand outside his room. Please do not knock or be offended if we do not come out to say hi. You may see us and we may pass you by, just give you a hug and go on to do what we need to do. Again, please do not be offended. 

If you have recently visited, please do not feel that this note is directed to you. We have been blessed but are just needing to change direction right and keep his room calm and quiet.

REGARDING GIFTS: Robbie is being blessed by many, many gifts and we decided today that this is one more thing that is beginning to overwhelm him. We appreciate EVERYONE who is showing our child love in this gift giving way (I am the most guilty of this by the way). 

PLEASE, NO GIFTS OF TOYS OR FOOD FOR ROBBIE RIGHT NOW. We are trying to be very strategic with what we bring into the room. He has a great desire to play with and do all the things he did before and gets really frustrated when he can’t. Also, the room is just getting filled up with stuff. Just the effort of him trying to communicate what he wants can cause 30 minutes of frustration. His day is now full of very hard and challenging speech therapy, occupational therapy and physical therapy sessions. Robbie needs to focus on their games and challenges right now.

Please don’t think that we take any of your kind deeds, efforts and gifts to us for granted. We love you all.

Ken & Tanja

Update #25 - A Warrior Spirit

My brother Robbie was a constant help during those hard first few weeks in the hospital.  He even delayed his return trip to Italy (his home) to stay and help.

Robbie’s surgery for his feeding tube went well and he is back in his room. It has been a long day of discomfort as he is coming out of general anesthesia and the pain of a “new belly-button” and central line in place of an IV. Hopefully the coming days will begin improving. 

My father in Searcy was walking out to get his newspaper this morning and had a lady pull over into his driveway. He did not know her but she had just dropped her son off at a nearby elementary and saw Dad. She asked, “Are you the grandfather of the boy at Arkansas Children’s?” After he said yes, she told him that she and her family had been praying for him and said, “We were praying as a family for him last night and after we prayed my boy, who has a birthday coming up, said, ‘Mom, do you think we could ask everyone coming to my party to bring money instead of gifts so we could give money to Robbie’s family?’”

When we told that story to Robbie, he began crying and wrote out “God bless him”.

Yes, God bless you all.

Ken

Update #24 - Surgery & Birthday Blessings

Robbie’s surgery for his feeding tube went well and he is back in his room. It has been a long day of discomfort as he is coming out of general anesthesia and the pain of a “new belly-button” and central line in place of an IV. Hopefully the coming days will begin improving. 

My father in Searcy was walking out to get his newspaper this morning and had a lady pull over into his driveway. He did not know her but she had just dropped her son off at a nearby elementary and saw Dad. She asked, “Are you the grandfather of the boy at Arkansas Children’s?” After he said yes, she told him that she and her family had been praying for him and said, “We were praying as a family for him last night and after we prayed my boy, who has a birthday coming up, said, ‘Mom, do you think we could ask everyone coming to my party to bring money instead of gifts so we could give money to Robbie’s family?’”

When we told that story to Robbie, he began crying and wrote out “God bless him”.

Yes, God bless you all.

Ken

Update #23 - Loving Hugs

This is as far "up" as he can pull his feet.

It has been a relatively decent day with Robbie. He had a better night last night and made it through the day without any major difficulties. It was a full day of muscle spasms in his arms and legs that caused continual discomfort but nothing so bad as to cause him to scream. It takes two of us and often 3 or 4 just to be there while he is awake to rub his ankle, foot, calf, bicep, shoulder, hands, fingers, forearms or wherever the next cramp hits. 

Our boy has had an absolutely amazing attitude throughout the day. His day is so hard but he is doing everything possible to bless those who are around him. He’s hugging his doctors, nurses, family, and friends. He signs “I love you” and “thank you” throughout the day, often during one of his spasms. 

He really worked hard during speech therapy today and we are happy to say he was able to drink some without “dribbling” and even ate two small bites of pudding. Eating was a challenge as he is still unable to move the food to the back of his mouth well but he worked SO HARD at it. His spasms kept him from PT and OT today.

He had a very painful botox injection in his calves which caused much crying and many tears. These injections, in 2 to 3 days, should help relieve the pain in his cramped-up feet and ankles and, in 3 - 5 days, should allow his feet to relax so that his heel can touch the ground when he tries to stand. This is something our rehab team asked for as they have been unable, during physical therapy, to get his feet to flatten out.

PLEASE PRAY FOR HIS SURGERY TOMORROW!

He will be having a feeding tube surgically connected to his stomach tomorrow and will be undergoing general anesthesia for it. This will, in the long run, make things easier for his recovery and rehab and possibly allow him to go home sooner. The next day or two will be tough though, so we ask for your prayers for strength.

We are in our little apartment and allowed our brains to veg-out on a bit of silliness as we watched part of American Idol. We are exhausted and are quickly heading to bed.

We love you all and continue to praise God for His big family who are supporting us.

Grace and peace,

Ken