What's Happening @ rhcc
May 4, 2015 10AM
In response to the Pharisee’s charge to Jesus to stop the people from offering up praise, he answered, “I tell you, if these were silent, the very stones would cry out.” Luke 19:40
The rocks may be preparing to cry out on our behalf as we have been so slow in sharing our praises through more regular updates!
Since our last post we have continued our journey with Josiah. The months have been filled with good days as well as not so good days, but today we would especially like to focus on God’s abundant goodness and love poured out on us over the past months. It is a longer post, but we had a lot of overdue praises to offer up!
We apologize for leaving you all hanging last September when Josiah was transferred to the ICU following his “routine” VEPTR lengthening. We kept thinking…”lets wait until we know more details.” The doctors were confused by Josiah’s setbacks and uncertain of the cause. We simply had to wait for God’s healing. Then before we knew it, we were caught up in the whirlwind of hospital discharge and home adjustments with the other 3 kiddos. It was a long and rough road of recovery but God was there through it all.
Josiah grew healthier and stronger with each day and made some tremendous strides in his physical stability and head control. This started us on a journey to acquire a piece of equipment called a “sitter system” for Josiah to be able to sit up with only trunk support given and requires no hands from mom….thereby making playtime and therapy time a lot easier. We call this a journey because the process for justification was long and arduous.
We began the process for insurance approval in mid-October and did not see it completed until March! In the interim, Josiah developed a pressure sore from his wheel chair back, thereby creating an even greater need for the “sitter system” as well as a new molded seat back for his wheelchair.. Insurance was failing to see these as imperative and we received denials on our requests.
Our insurance case manager (a fellow believer) went to represent our appeal to the medical insurance director armed only with the faithful prayers of a few. She called ahead of time to say that it didn’t look good as she had nothing new to present and argue so we needed to pray hard. She presented the EXACT same medical info submitted and denied previously and received the response, “Is that all you’ve got?”
Just when you think all is lost, God comes through in bigger ways than you can imagine and displays HIS GOODNESS AND LOVE for all to see. The next day she called in amazement to say that BOTH items had been overturned and were fully approved!! “This NEVER happens” she told us. PRAISE GOD!!
One of our greatest heartbreaks and struggles with Josiah is our inability to clearly understand and communicate with Josiah concerning his needs. When he is happy you cannot mistake it for anything else, but when there is pain or discomfort we are left to guess what and where the problem is. Or even the more simple questions …. What toy would he like? What would he like to do? Where would he like to go? What is he thinking about? In January God answered prayers for this was well. Josiah was accepted into a communications program at UW in Madison. Each week we work with some cutting-edge communication devices to help give Josiah a means to tell us what HE wants!
Josiah will be 5 years old this May!! Praise God! With this milestone, we hit yet another area of uncertainty…kindergarten! Our school district currently provides Josiah with Speech, Vision, Physical and Occupational therapies in our home. It is our hope to continually to stretch and support Josiah to become the Josiah God created him to be. We want to provide him with every opportunity, but always with his health and safety as first priorities. Given his complexity, release of him to the school was simply not an option. In October we approached the school and requested that Kari accompany him with a modified(shortened) school day. After months of waiting and praying, the school has agreed. The specific details are yet to be determined but we are confident that God will take care of every last detail.
As if all this goodness were not enough, we have saved what is perhaps the most miraculous for last. Some of you are already aware of this news but we needed to be certain to give testimony to all who would read about Josiah. In February we took Josiah to his Orthopedic Specialist for x-rays and to set the date for his next VEPTR lengthening. Needless to say, after the last hospital experience, we were not at all looking forward to this appointment. Our fears seemed to be confirmed as our doctor sat speechless staring at the new x-rays. Then came what we could never have expected…”His back is different. It is better today than in was 6 months ago!!!”
This is not how the VEPTR works! With the device, you receive any and all correction to the spine at the time of surgery. Then over the coming months, the scoliosis will attach again and create a larger curve, thereby requiring the next “routine lengthening.” SO, Josiah’s curve should have been greater on this day than it was back in September. Yet, no matter how many times the doctor re-measured, he continued to get a CORRECTION of 10-15 degrees!! He conceded that this was answer to prayer…no medical explanation!
God has gifted us with the Spring and entire summer with no back surgeries! It has also been decided that following any future surgeries, Josiah will be taken directly to the ICU and kept in a coma-like state and monitored until the doctors are certain he can tolerate the pain.
God IS good and he lavishes His love on all of us daily…sometimes we just don’t open our eyes to see it or we fail to shout it from the mountain tops! We cannot express our gratitude enough for your faithful prayers and we pray that these updates serve as an encouragement for you wherever you are on your own journey. God does not promise that the path will be easy but he does promise to be there with us through it all.
September 19th, 2014 11AM
Josiah just made the transfer to th ICU. Breathing was difficult and in need of pain meds that required a more critical care team to be in place. Will keep you updated. Keep those prayers coming
September 18th, 2014
Josiah will be staying the night at the hospital again. He continues to struggle with restlessness and pain, He is in real need of peaceful rest, and yet when he dozes off, his oxygen drops considerably. Keep your prayers coming.
Sept. 17th, 2014
Josiah is still working on getting those lungs to breathe better him. He is still requiring some oxygen for this and will be staying another night. Pain seems to be under control and he is sitting up in his chair as we speak. As I've been telling people, surgery went great....recovery...a little slower. Thanks for praying!
So...a little time has passed again since our last post! We do apologize for not always being very disciplined at updating Josiah's progress, but please do know how very much we appreciate your continuous prayers.
In April the shell of casts Josiah had been wearing for 16 weeks were finally removed and 2 beautifully straightened little feet emerged. Praise God for repeated healing! He will now wear braces daily to maintain the correction achieved. This healing has now allowed for Josiah to begin using a stander to gradually build up strength for weight bearing. This is a very slow process but we wait in anticipation to see what God will do.
The surgery in January really knocked him down in many physical areas. He lost a lot of core strength and head control and dropped down to 22 pounds. Yet, ithrough it all his little spirit has not been broken! His smiles brighten even the darkest of days. He works very hard everyday and is gaining that strength back. As many of you will recall, gaining weight for Josiah is very difficult so it is yet another uphill battle for him. We have seen more specialists and run more tests.While we are still waiting for a few results to come back....the others have only confirmed what we already knew---God made our precious little Josiah to be our precious little Josiah. Period. We did find, however, that he is extremely deficient in iron. So we are adding daily supplements and will recheck levels in 2 months.
In May we had an appointment to check the progress of Josiah's scoliosis and expected to have his next legnthening surgery (needed every 4-6 months) It turns out that Josiah's slow growth is a tremendous blessing in disguise as we were told that this surgery will not be needed until September...9 months since the last surgery!! That means that we get a full summer to just enjoy life as a family. God is so good!!
Prayerfully we will only have joys to post here over the summer. And if we forget to update for awhile....well, no news is usually good news for us.
Blessings and love to you all!
January 23 2PM
JOSIAH IS HOME! Just got him back and he is doing well. This time around things went much better. Still has some mild irritiation from time to time, but overall...he thinks he's a funny guy. Which we love to see! Thanks again for your prayers. God has always been faithful through all of these things. We know there will always be tougher days ahead, but we are so thankful that God continues to bring everyone through them all. I have recently been memorizing Isaiah 43...what a great reminder that God takes care of his children. Though waters are deep and tumultuous at times, and the fire can certainly get hot in our lives, God protects us...to Him be all Glory!
No for some "normalcy" to return...although our house will never be quite "normal"...afterall I live here!
Peace and Grace,
Craig and the fam...
January 22 9PM
Josiah is still resting nicely and things are going very well. He has been awake a bit and looked at some of his toys briefly and then decided sleep is better. He typically can be pretty groggy the first day...plus we woke him up early to take him in this morning. The boy usually sleeps until 11 so he needed to get back what we took from him. :)
So for now, all is well and on schedule to come home tomorrow sometime. Pray for him, but also for his mom to get a good nights rest tonight. AFCH has the best nurses to take care of him all night! Just hope momma sleeps through it all!
Will update you all in the morning. PEACE and PRAISES to our King!
January 22 10:50 AM
They are just wrapping up with Josiah and things went very well. They added the pins back into the tendons and are pleased with everything. Put some new casts (red of course) back on (half-leg) which Kari is THRILLED about for several reasons, one of which includes changing diapers. :)
Hopefully we will see him soon and the pain will not be a factor today. They are putting in the nerve block caths as I write this! Thanks for praying, will update you after a while.
January 17th 7pm
We found one of the greatest gifts ever this morning....a smiling Josiah peering at us from his crib in the wee hours of the morning!!! And the smiles have been abundant all day:) Praise God that something so small brings such joy even in the midst of pain.
Removing the catheters proved to be yet another challenge for Josiah. After turing them off and beginning morphine, he seemed comfortable so the doctor talked Kari through taking the catheters out at home. All was seemingly fine until about 7pm when it all fell apart. Josiah became quite agitated again and began throwing up. This continued for 2 days with little rest and little to no feeds for Josiah.
Because the throwing up seemed to be related to the morphine, it was decided to stop the use of it. Josiah has improved greatly and has since restarted his feeds.
While this is great news right now, it does seem to eliminate yet another pain reliever for Josiah in the future. Thankfully, though for next week's surgery the doctors have devised a plan to be able to use the leg catheters again and leave them in longer.
It has been a very long, painful, and seemingly darker 2 weeks but the "Son" was surely shining today:) A day for refilling. Over the past 3 1/2 years we have learned that our children's smiles are something to be treasured and not taken for granted.
Many of you have shared that you cry often with us on this journey...well may today's post bring smiles to be shared with all you see!
January 13th 2PM
Josiah continues to do well at home and is comfortable. He is sleeping a lot, but also has had some time awake and looking at toys with some brief interactions with us. We will be trying to turn those leg caths off tomorrow and switch over to an oral pain med, so pray that goes smoothly. We are hopeful it will.
Josiah is also scheduled to return to get the whole job finished up in the OR on January 22nd, so keep this in mind. I have jokingly said to people that "he will be felling better just in time to go back to the hospital." Hey...have to keep smiling about it all right? Thanks again for checking back here and praying for Josiah and our family. God has proven Himself faithful and gracious once again. He continues to give the supply of strength despite all that happens. For that, all praise truly belongs to him.
January 11th 10:06PM
Josiah home! More to come later, but he is sleeping in his own bed and doing well. Now time for us to rest! Thank you God!
January 10th 1:30PM
So...Josiah's pain has been well managed over the past 24 hours but now he seems to have come down with a stomach bug over night :( One more thing on top of it all right?!?
We had to stop his feeds and are going to attempt to restart them this afternoon. We will also try to get him up for the first time after surgery. We will just take it nice and slow.
If all goes well with these, we may be looking at going home tomorrow afternoon! The plan will be to take Josiah home with the leg catheters still in place so the meds can still give him pain relief to his feet. We are currently working on a back-up plan for pain if those would slip out again.
So today is a bit of a rest day and thankfully Josiah seems to be on the mend after this little hiccup of a stomach bug. Small in the grand scope of things.
Thanks for your continued prayers. We have much to share about this journey at the appropriate time. We don't have all te answers, but we have seen some glimpses of God's grander plan in all of this. Again, that doesn't make it easier...it just increases our trust in the purpose of the trial. If the goal is to fully submit and surrender, then this is all part of stretching us in that.
I know I say this all the time, but once again, we feel the presence and power of prayer warriors surrounding our family in little JoJo. We know he is loved and cared for by many.
Craig and Kari
January 9th 10:45AM
Josiah had a restful nights sleep minus some small hiccups of getting sick and spiking a short lived high fever. Praising God for this. He is still sleeping and has to be so tired from yesterday's events. Now we just start to try and add back feedings and play it by ear with the meds. Thanks for continuing to pray. Did I mention that hospital beds/chairs aren't that comfortable? In all seriousness though, I would sleep on the floor 100 nights if it meant he could be peaceful through all of this. As we were all exhausted last night...medical staff included...Matthew 11:28-30 came to my mind a lot last night...
"28 Come to me, all who labor and are heavy laden, and I will give you rest. 29 Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.”
Praying that this painful trial is what draws us to Jesus for rest. Would be nice to let Him carry the burden! Problem is, which is not really a problem at all...is that Jesus didn't promise to remove the burdens of life...he promises rest and peace through it all. Our problems and trials don't disappear...as much as we'd like them to...it's what we do with them. Will we give those to Jesus and take his yoke upon us, and LEARN from him or will we try and carry this all ourselves. Last night was not fun...and I am sure you who are reading this have some similar things in your life. We didn't think it would end, and didn't know if we can watch anymore. And we have to admit, we took some of that frustration to and out on God...but He is big enough to handle it. He must be, because he didn't just strike me down for it...I was pretty mad/confused at why it always has to be like this. Thankfully, He is gracious and took my emotion and gave us the peaceful night we had hoped for. The breakthrough after the battle. So we continue on...Josiah continues on...a lot to learn from this about who God is, and why He allows, and what He promises. Still processing all that...
Thanks for being such an awesome family that rallies around us. We know your love for Josiah and our family and are always blessed by it. Its a rest day today with no talk of any discharge time. Will keep you all informed. In the meantime...let's all take our rest at the feet of Jesus. Peace.
January 8th 9:40
Thank you all for your faithful prayers. Josiah is back safely in his room with much better pain control. The placement of the leg catheters was successful so now we just pray that they stay in position. His nerves are so tiny that the catheters can easily slide out of place and become ineffective.
As a result of the multiple sedations and all the meds pumped into him, he is requiring some oxygen for now. They expect that by tomorrow we should be able to wean him off of this.
We are overwhelmed by all of your love and support.
January 8th 7:07PM
Don't have time for a long update right now, but just wanted to let you know that Josiah has been in severe and inconsolable pain for the last 8 hours or so. Has been awake since last night around 9PM with agitation. THe tried all they could with a lot of pain meds though his IV and through his GTube, but it wasn't enough. They had to take him back and sedate him and try to run an epidural block, but when he woke up that didn't do it either. So he is currently in the OR under sedation again as they try to get leg cathedars in to run a block that way. Hopefully this will work to calm him...if not, they will move him straight to the ICU where he will get a harsher medication.
Please pray. It is hard to see him suffer. Will update more when I get a chance.
January 8th 11:30PM
Josiah had a bit of a rough night last with pain and was agitated and uncomfortable most of the night. Please pray we get ahead of this pain thing! This is pretty typical with Josiah, and we rmeind ourselves that there is always hope each new day...Romans 15:13 is our reminder of placing our hope in Christ in all things. We will let you know how things progress here. Kari is tired as you can imagine and I spent the night in Lake Mills with the other kids for some normalcy and getting back to school routine. Pray for the other kids to when you think of them as they deal with all the shuffling around! And praise God for Grandpa and Grandmas!
January 7th 3:30PM
Just realized we hadn't updated. I thought Kari posted one, she thought I did...you get it. Sorry about that. Josiah had a really peaceful night of sleep and has maintained that routine by sleeping most of the day. He is still very calm for the most part unless you move him. He then gets a little cranky. The epidurals in his legs seem to be doing the trick. Looks like they are in no rush to send him home...so maybe Friday. We'll see. And then we'll be back again in two weeks for another surgery.
We still feel your prayers!
January 6th 8:30PM
We are finally settled into a room and Josiah is sleeping soundly for now. Still very groggy from a lot of meds in his system and as always they are trying to stay ahead of the pain. For now, we are just wiped out after a long day. Please pray for a peaceful and restful night for him of course and us too. Our kids are at home and enjoying some time with Grandma and Grandpa. Thanks for your continued care and support and many offers to help. Thanks most for lifting us up in prayer. Stay warm...and I will post an update tomorrow morning.
January 6th: 4:30PM
Just got word that Josiah is wrapping up. We jst met with his surgeon and things went well, just a little differently then orginally planned. Long story, but because of the complications of the feet, he had two pins in each and then took one out to give him a little more flex and put on half casts instead of full. Good for two reasons, because he wanted to ease him into the stretching and also to get those caths in for pain. Bad news, or not even really bad, but differently than planned is that Josiah has to come back in two weeks for another surgery to get that extra pin back in and get full length casts. Overall we think this is actually better in the long run...again...maybe a little hard to explain...but it eases him in to this thing in phases.
Continue to pray. We will hope to see him soon in recovery.
January 6th: 4PM
We are still waiting and haven't heard much other than Josiah is doing well through the procedure and is stable. We did meet with the anesthesiologist a bit ago though to talk about the best plan for pain management. The foot reconstruction is painful and Josiah has always struggled with pain management. Because of the full length casts, he likely won't be able to do the caths in each leg to block nerve pain...so pray that Josiah will tolerate this well with some of the other options they have.
Will keep you all in the loop when we get word that they are wrapping up.
January 6th: 1:35PM
We just received an update that the rod lengthening portion (VEPTR device in his back) of the surgery is completed and they are now onto his feet. Will keep you all posted. Things are going well. Just even got to pick cast colors. Picked green and gold...okay...we didn't do that. This is painful enough for him already. His favorite color is red so we went the Bucky Badger route. See, I like some Wisconsin teams...okay...really only one...and its not really a team...its a school. Can you tell I'm bored waiting?
January 6th: 12:30PM
They just wheeled Josiah back for surgery. Late start as usual. So the wait begins. Should be about 5 hours or so. Thanks for supporting, loving, and most of all praying. Never gets any easier to watch him go through so much pain...but God has been so faithful and good in it all and we constantly feel His peace and presence. As usual, we were able to pray with the doctors before he left...keep praying that Josiah's life will bring many to Jesus.
January 1, 2014
It is time once again for an overdue update!
Josiah will undergo surgery yet again this coming Monday, January 6! We intended to give this update a few weeks ago, but dropped the ball with all the excitement of the holidays.
This surgery will include the lengthening of his titanium rib as well as reconstruction of both feet. Again, the device placed to aid in correcting his scoliosis requires "tune up" lengthenings (as our doctor calls them) every 6 months.
And though we corrected his club feet through serial castings as an infant, his feet now also require a "tune up." Club feet have a tendancy to attempt to return to their original postioning before the age of 5. To correct this Josiah will need tendons released and lengthened. He will have temporary pins placed and have full leg casts. After 6 weeks the pins will be removed and he will be placed in half-leg casts for another 6 weeks. While recovery will be long, this surgery will prayerfully end the correction ever needed for his little feet.
The surgery is expected to take 5+ hours. This will be his longest surgery yet. We are aagin asking for your faithful prayers.
Josiah was just very sick with respiratory issues (likely pneumonia again). SO he is not as strong going into surgery as we would like. But we know that God is sooo much bigger than that! For it is only God who has brought Josiah safely thus far.
He is expected to be in the hospital most of next week, so we would also sppreciate prayers for the other kiddos as it is always challenging to be apart.
Thanks again for your continue love and support!
October 15th, 2013
Better late than never? Just wanted to acknowledge that agian, it has been a while. These last few months have especially been crazy with so much going on. Weird how life doesn't often slow down the way we want it to sometimes. Most times.
Well, Josiah is doing alright. Many new updates since our last post. Before I get to him, our family is doing well too, busy life with three other kids that are getting into more sports and activites, but that's all part of it. We are blessed to watch them all grow.
We have much to praise God about with Josiah's care recently. While he continues to make small strides, he is getting daily therapies through the school system here and they are coming into our home to do this. This is a blessing for numerous reasons. He will be less exposed to the germs in the school, and it is much easier for Kari than to have to bundle him up and get him out the door, in the car and back again all for a 45 minutes session. We are thankful God opened the door for us on this. In addition to this, Josiah is going every Monday to the Wisconsin School of the Blind in Janesville. He goes to pre-school there believe it or not! He is techincally "blind" the way his vision is, and they are working with him to help him engage things a bit better. The resources they have ther are incredible and his teacher is an unbelievable woman who pours her heart out into these kids. Josiah sees her in the afternoon (pre-school is in the morning with all the other kids), so he get her all to himself. Josiah couldn't be there in the morning because the little man does sleep quite a bit and often until 10-11 in the morning.
We still find that he gets pretty tired from therapies and just simple life in general. This is especially more true when he gets sick. Sleeps alot. He still continues to gain only small amounts of weight even despite trying to change his diet a few times with higher calorie liquids. He is also still tube fed all of the time due to his swallow study showing that he aspirates frequently which was likely some of the cause of his multiple pnuemonias. Praise God that he hasn't been sick for a while with that, but I'm quite sure we will see it again.
Josiah did have a weird encounter with the VCV or shingles/chiocken pox virus which required some attention and even a biopsy on his leg due to blisters breaking out, but the results came back nagative and no one is quite sure what happened. This wouldn't be acceptable normally, but Josiah's whole medical history has always been this way....mysterious.
Josiah will also be getting new glasses to help with his vision. He's not a huge fan of them, but hopefully they will help his vision come to center. No one is quite sure if this will help or not. Only time will tell.
Josiah continues to struggle with the day to day challenges of GI issues, but he truly is a trooper and joy through it all. While he is not his smily self all the time, we have seen a lot of his personality come out especially as he interacts with some of his therpists and the new things they come up with to help him in his repsonses.
As for Josiah's next surgery, for now, his back is holding well, so we were given the option to extend the VEPTR after Christmas if we wanted. At this time however, we will also be doing a major reconstructive surgery on Josiah's feet. His club feet that he was born with are starting to revert back to the way they were before casting and surgery, so we have to fix them surgically if we want him to be able to use standing-aide devices to help in therapy. Not what we wanted, but again, trying to give him the best shot at his maximum potential. More to come on this.
That's the update for now. We continue to pray for God's healing hand and trust that God can and will do whatever he desires in Josiah's life. God is being brought glory in all of this!
We will try and keep better updates. Thanks always for your prayers!
Craig, Kari and fam.
P.S. We had a new addition to the family in August. Her name is Ruthie and she will be trained as a therapy dog for Josiah. Ruth in Hebrew (the same Ruth story in the Bible) means "loyal companion." That's what Ruth was to Naomi in the Bible, and that's exactly what we hope Ruthie will be for Josiah.
April 23, 2013
3 months later comes the update! Josiah has been doing pretty well. His pain seems to be managed well and he is sleeping better, and he is taking more leaps in his therapies. We continue to see great smiles. We have learned some thinsg about his vision that has helped us to understand why certain behaviors exist and to make life more enjoyable for him. We learned he can't see in front of his face, but rather in his peripheral. We also learned his favorite color is red, so as you could guess...we have many "red" things he plays with now!
He did have a two day hospital stay with pneumonia recently, and recovered well from it, but we are praising God that he made it all winter without having any problems.
Josiah continues to only gain small amounts of weight...although he is gaining...and getting long. We can't believe he will be 3 at the end of May! It has truly been a long journey with him, but God continues to do His amazing works.
Josiah does have his next surgery scheduled for MAY 6th. He will be in the hospital a few days. The surgery itself shouldn't take long as they are just adjusting the device, but your prayers are always appreciated. Please pray for a quick recovery and minimal pain.
Pray that he recovers quickly as we will be celebrating his 3rd birthday by running a 10K with him! Isn't that how all 3rd birthdays go?
We have linked up with an organization called My Team Triumph that helps disabled individuals participate in an event like a marthon by being pushed in a jogging stroller. We thought this would be a great way to celebrate Josiah's life and have a team around him that will be cheering him on to victory. We will be doing thsi on May 25th in Madison...so come one out if you are around!
We continue to praise God for your prayers and continued support. We know their are many more battles to face with Josiah, but know we face them with your prayers and with the strength of the Lord Himself. He is good. We continue to pray that God would bring full healing to Josiah...but above all else would be glorified and make himself known through his life.
Grace and love,
Craig and Kari and fam.
January 28th, 2013 9:30AM
Well, as these updates go, sometimes it is hard to keep up with. Especially when you have a lot going on and even when you don't know quite what to say. Since the last time I updated, Christmas and New Years has come and gone, and we find ourselves in the dark of winter. Hopefully spring in sight though! I know you probably feel the same way.
These last two months have been a series of ups and downs. In many ways, since right before Christmas, it has been exhausting on us and Josiah. He has struggled to sleep some nights (and days) and has gone for stretches of up to 40 hours being awake. The difficuulty lies in not knowing why. Sometimes he is awake with insomnia type behaviors, and sometimes he is awake in pain...crying through the night unable to get comfortable. This is especially hard when this happens, because Josiah cannot communicate what is wrong.
This led us to try a different pain conrtol regimen, which is effective as long as we don't get behind on it...which unfortunately has occurred a few times by different circumstances. Josiah has been back on almost all the pain meds he left the hospital with and then some. There is no plan to take these away seeing that he clearly needs them.
Since surgery, we have learned that the scoliosis has worsened a bit which probably has added pressure on his ribs/pelvis. We also had a CT Scan which showed that the device is located VERY close to a nerve which may be causing all the problems. Our decisions at this point are to try and manage the pain control and endure the rough patches, OR move forward with another surgery to reattach the device to his spine.
We haven't made any decision yet, and aren't sure what the best thing is for Josiah. We certainly don't want him to be in pain, but we also don't want to continue with agressive surgeries if they aren't needed. We wish it were easier to make these decisions, but it just isn't!
We ask for your continued prayers over this new decision we are faced with. Pray for continued rest for our family too. We never know when a rough patch is coming...so we try to get extra sleep when we can.
I will try and be more active with updates, and will let you all know information as we know it!
We still continue to experience the presence and joy of the Lord in this whole situation, and trust in what God is doing. He give perfect peace to us!
Craig and Kari
November 20th 3PM
Hello all! Thought I'd post a quick update about how things have been going at home. The short answer is...PRETTY GREAT!
Josiah is in a really good mood and we have gotten several smiles and giggles. We praise God for this!
He is still adjusting to positioning and is getting used to usiing muscles that he probably became comfortabel in not using, so it is going to be a road for therapy.
He also is still posting hints of a fever, but we are keeping a close watch on that. He saw his pediatrician yesterday, and will followup with our surgeon in a couple weeks, but for now, he is doing well.
I will try and post a video here soon. It would be great for you to actually see the smiles!
Thanks again for your prayers and support. Keep it up. We have learned so much from Josiah and continue to be blessed as He is instrument in strengthening our faith in a loving God!
November 15th, 2012 9AM
Just wanted to touch base and give you an update on how thinsg are going at home. Josiah is still on a lot of pain meds and is uncomfortable at times, but is gettiing some good sleep. Diaper changing and bed-time proves to be challenging/painful...especially when he decides to throw up. Changing an outfit isn't the easiest, and can cause him a fair amount of pain. Kari and I joked that we should get him some hospital gowns! They are much easier to work with.
Pray for Kari as she needs good rest. Pray for the other kids. This has been an adjustment for everyone. As if Josiah did not get a lot of attention before, he is requiring a lot more these days. This can be hard on the other kids. Keep them in your prayers.
Thanks for all your love and support. I can't say that enough. We have been flooded with cards, gifts, warm meals, frozen meals, cookies, and most of all prayer and support! We are truly blessed!
November 13th 4PM
WE ARE HOME!
Car ride went well with the extra pain meds in his system. That's all for now...have to unpack!
November 13th 12:00PM
After one week...Josiah is headed home from the Childrens Hospital today! We are currently just waiting on all the orders which take a while, but we are in no rush. Josiah will be going home with several pain meds, and life will be different for him with the VEPTR in, but hopefully in the long term a better life.
Please pray for the adjustment home with all the moving. Pray for a restful week for him and a pain free one. Pray too for a restful week for Kari. There is some anxiety bringing him home. Kinda of like when we brought Makaylah home for the first time 10 years ago, but...different. While we might be veterans parents of 4 kids, Josiah continues to be a learning curve. Please pray for the ride home too. He will get an extra dose of meds right before we go. I guess dad drives like a crazy man. Josiah usually lovces the bumps in the car, but he won't this time.
Finally, and most importantly, we give great praise to God for bringing us through yet another challenging time for us. He answered so many of our prayers (by "our"...I mean yours especially included). He is so faithful to us, and we trust in His love and goodness and what He is doing in Josiah's life.
Psalm 100:4-5 reads: "Enter His gates with thanksgiving, andf His courts with praise! Give thanks to Him; bless His name! For the Lord is good, His steadfast love endures forever, and His faithfulness to all generations."
This is what we will do all the way home. Fitting for this time of year, I'd say. But we ought to do it in all things. One of Josiah's favorite songs (so Kari says) to listen to is Bless the Lord (10,000 Reasons) by Matt Redman. I haven't made the list, but I bet if I sat down, Kari and I could come up with at least that many reasons...probably more.
God is good!
Craig and Kari and the kids.
November 12th 2:34PM
Hello all! Things have been pretty calm for Josiah around here and this morning he was "technically" cleared to go home. In that, "medically speaking" he has no reason to stay here. We are, however, going to mkae sure we give him a day to watch him as we would all feel better if we didn't have to return. So for now, it looks like we would be home tomorrow! It will be an adjustment coming home and he will still be on a lot of pain meds, but it is always good to be home!
I will let you know when this happens! For now, keep on a prayin'!
Craig and Kari
November 11th 8:30AM
Just an update from last night...
They wanted to do several tests due to his fever (which has gone down now) to rule out several things. Those all came back negative, so we are praising God for that. We truly give God praise for things like this, as we do believe in the power of prayer. God's people prayed, and the fever went away...glory to God for this!
So, for now, Josiah is just still in some pain. It is possible the fever was induced by pain, but this is only a possibility. I guess fevers are hard to pin down by origin in something like this. They just want to make sure it is not one of several things that would require a lot more attention.
Josiah will spend the day here and probably tomorrow too, just depends on how this day goes.
For now, he is resting again, and we will update you with progress through the day.
As always, thanks for walking this with us, and praying all the way...
On a seperate note, Josiah would love a Bears win over the Texans tonight. Just sayin'.
Craig and Kari
November 10th 9:35PM
Hello all. Just a quick request for prayer. Josiah has a fever and those aren't popular after surgery. They are starting the testing to rule out certain things and investigate more. Hope fully we will know more after a while. The day had gone really well until know. Pain under control, sleeping well, etc. This is just one of those "too exciting" events that we could have gone without, Thanks for your continued prayers!
Craig and Kari
November 10th 8:40AM
Good Saturday morning! Just a quick update. Josiah got moved last night to the fifth floor and they are still managing pain for him. We had a busy day with doctors/therapists/friends/family. Seemed like it was a nonstop day!
Josiah is sleeping well still and spend most of his time that way as the pain meds sooth his aching body. Momma did get to hold him for about an hour so that was good.
I stayed in Lake Mills last night with the kids so that was good fro all of us. Kari seems to have gotten some good rest. Please keep praying for that.
Probably be staying through the weekend. Time will tell!
November 9th 9AM
Good morning. Pretty peaceful night for Josiah with pian under control. Thank you for your continued prayers. He is "technically" out of the ICU, but still in the ICU wing as they have all thier beds full upstairs. This hospital is getting fuller by the day, which is bad because kids are sick, but good because they have such great care for patients and their families. I hate to use this blog as a fundraising drive, but do know the hospital is in the process of building additional space. Kari and I want to give towards this initiative because this place has been so meaningful to us. I say that all to say, if you felt compelled (and cheerful) to give towards a worthy cause, know that this is one of them! We hope to get a "fish" with Josiah's name in the surgery wing. Our kids thought that was cool and meaningful to them. Plus, the bigger benefit is that it helps many other kids...
Anyway, that's enough about that...
Josiah JUST got his chest tube removed which is great. His pain should be considerably less without that in. Those things are just yucky...
He has been tolerating feeds well, and today we hope to get him in Kari's arms for the first time. She is a little nervous about that, because handling him will be much different know, but I think it will be a good thing for both of them.
That's all for now. The kids are coming after school and get to meet the UW Badgers Atheletes, so they are jazzed about that.
Hoping for a peaceful and uneventful day as always...
November 8th 11:25AM
Pretty quite right now for things. Josiah got some rest last night and has slept most all of the time since surgery. This has to do with the pain control, but we would rather have him be knocked out and comfortable. We met with his surgeon again and he confimred that this VEPTR surgery is quite painful in trems of moving ribs (pressure) muscle spasms from stretching/cutting, and having a metal hook attached to his pelvis. So...for now he is still resting from all the trauma to his body. We are please with his progress so far though.
He "may" have the chest tube for one more day because it is still draining a bit much. They are closely monitoring this. His vitals are good and he has been breathing well.
He did throw up last night so they had to back off his feeds a bit.
All the details...maybe more than you all want to know...
We might be moving out of the ICU today which would be good, but we are also in no rush. We know Josiah, and we'd rather stay a bit longer then leave to early just to come back. No rush for us.
Anyway, thinsg are doing okay here. Kari got some good rest last night as I (Craig) took the nightshift. These beds in the room are kind of like bricks! However, the private family rooms have sleep number beds! We praise God for # 75 on the comfort settings. :)
On the family front, the other kids are doing well and have seen him both nights, but will take a night off tonight. They will be back to meet some of the Badger Athletes tomorrow. Should be fun.
That's all for now.
Thanks for praying. Keep it up.
I have been meditating on this verse all day and encouarge you to do the same...
Romans 12:12, "Rejoice in hope, be patient in tribulation, be constant in prayer."
Craig and Kari
November 7th 9:39AM
Good morning! Just wanted to shoot you all an update with how things went during the night. Josiah is in a fair amount of discomfort and waking up every 30 minutes or so whimpering and in pain. Please pray for him to get over this hump. This is to be expected as a lot of the stronger pain meds have worn off. They tell us that pain and discomfort is to be expected after a surgery like this, but especially because of the chest tube being in place. This is very uncomfortable for kids.
They are trying to stay away from narcotics because of the slowed healing it produces, and because he is breathing so well. Using the stronger pain meds can slow his breathing and they want to keep him off oxygen if they can.
For now, he is in a sleeping mode, but Kari didn't get much sleep last night. Hopefully we will get over the hump today. He will probably be in the ICU one more night and then move to another room.
Please pray for sleep and rest for Josiah and relief from the pain. Don't stop praying! We're not through the woods yet! And even if we were...don't stop praying! This is the start of a long journey for Josiah and we need to keep trusting in Jesus for complete healing....whenever, and however that is to come. Because we know it is to come. We have a great hope in these things.
Peace be to your day and again, we can't say thanks enough for having you all walk alongside us in this. Through these trials, I am always CLEARLY reminded that we were never meant to do life alone. Praise God for living in such an encouraging community of faith.
Craig and Kari
November 6th 7:43PM
Sorry for the delayed post. Been visiting with some family.
Josiah is sleeping comfortably in the PICU for the night. He has a lot of drugs in his system, but this is keeping him ahead of the pain which is good. We don't want a repeat of the pain he experienced after his last surgery.
Dr. Noonan was very happy with the surgery. He only had to place one VEPTR device (titanium rib) and I just got done seeing the xray. Josiah's 90 degree curve is at around 50 right now so he almost "halfed" it as he wanted. He said everything went really well and because he had to place only one device that shortened the surgery time considerably. We feel strongly that God has hand in this whole day answering many prayers.
Josiah did have a chest tube placed do to a small puncture in his lung in which fluid accumulated. He needed a chest tube for drainage, and hopefully will be removed within the next couple days.
For now, he is still sleeping and doing really well.
We can't tell you how much we appreciate your very felt prayers. We felt a peace on thsi hard day that was truly beyond our understanding. Of course it was a lot of tears and waiting, but God has been so good to us.
Kari and I are going to try to get some rest for now. Will let you know if any new developments occur.
I love the family of believers God has placed us in! What an encouargement to us!
Craig and Kari
November 6th 2:45PM
Praise God! They just finished up with the procedure, and our doctor was super encouraged by what he was able to accomplish. He only placed one rod instead of the planned two, which was great to hear. He feels like Josiah did really well and got the correction he was looking for.
He did have one complication resulting in a hole un Josiah's lung/chest, which will have a tube in now for a couple days (more on that to come) but overall things are looking good. I can't tell you how much praise we have for God right now. He has heard many faithful prayers. Keep it up! We will be seeing him sometime soon, so that's all for now.
Peace from God and much praise for God,
Craig and Kari
November 6th, 11:50AM
First of all...thanks for praying. We have been so encouarged by the many texts and emails and support from all of you.
A little late start today to things. They were waiting on the spinal nerve team to come out of another surgery. Kari just went with Josiah in to the operating room about ten minutes ago to hold him while he went to sleep. So...it should be another 4-5 hours from here.
Will keep you posted.
Craig and Kari
November 5th, 2012
Josiah's surgery is scheduled for 10:30 AM tomorrow morning. We will be to the hospital around 8 or so. Please pray as it will be a long day of waiting. I will give updates as frequently as I can in this site. We have peace in the knowledge that God is good and He loves us, We will "stay our mind on Him because we trust Him!" Isaiah 26:3.
As always, we are blessed by all of your care, support, love and mostly PRAYER!
October 4th, 2012
We wanted to bring you all up to speed on where we are following the last post. Thanks for your prayers as we took time to make a decision on how to move forward.
After spending time thinking and praying...mostly praying really...we have decided to move forward with the surgery for Josiah. This will be a long journey over the next 8 years or so. We are asking for your continued prayers as we begin this tough road.
We have scheduled the surgery for November 6th at Children's Hospital in Madison. Recovery time is still unknown but we are guessing he will be in the hospital for at least a week. We will try and update more as we know more.
For now, we are just asking for prayer coverage. This is a big surgery with many risks, and complications most likely to follow. This would be the first surgery with one to follow every 6 months for the next d8 years o so.... Somewhere around 16-20 surgeries.
We are trusting Jesus along the way, and pray you would do the same with us.
Thanks for your love and support,
September 29th 2012
First of all, we thank you for praying for us and with us...we would like you to continue on in this in the days ahead...
On Wednesday we received the news that we hoped we wouldn't, but under the circumstances were prepared for (as much as one can be anyhow). Josiah's scoliosis has progressed to around the 90 degree mark, and in our doctor's assessment, a mark that needs to be corrected with surgery immediately. We had known there may be a point in which the external bracing wouldn't work anymore, and some form of internal bracing would need to take place. Our hope and prayers had been for this time to come 2-3 years down the road. Unfortunately we are already there.
His curvature has progressed quite rapidly (hence its name-Progressive Infantile Scoliosis), and left untreated Josiah would not survive. These truths were made very real to us yesterday and we are now faced with a difficult decision.
So, for now, we are just processing all this and weighing this against many things. We know this is the best surgical option and the time is now, and we completely understand what happens if we don't follow through with it.
We struggle because we also want to give Josiah the best life, pain free, and with the smiles and laughs we have so generously seen in these last weeks. This decision also includes the uphill battle that our family (and other children especially) would be taking with us. God designed Josiah and fashioned Him in a unique way. For this we are thankful. Nothing is simple or easy with Josiah except for the simple truths that he is God's child created PERFECTLY for the purpose only he can complete and he is loved....this part is effortless!!!
So we are asking for you to join us in prayer over this. Prayer for God's wisdom and understanding. We do not (or maybe are trying not to) fear in the face of all of this. We know God is with us, and can overcome all of of this with an utterance of His voice. (Timely that I'm preaching Psalm 46 this Sunday). I do pray that we would "be still" in all of this trusting that God is God and He will be brought much glory. So join us in that. God's glory for Him...His peace for us.
We thank you in advance for being our church family and praying for us, and being our friends and praying and journeying with us though this. As always, we ask for your respect and privacy as we process these things...this is especially important for our kids. We have tried to shield them from these things as much as possible and we try not to always be talking about it in front of them. Thanks for respecting us and them in this way.
We love you guys. God is faithful and God and will give us His wisdom and grace in this. Jesus is real in this, and we are trusting in His realness as He is near us and knows us in all of this. Praise to Him for this!
Love you all,
Craig, Kari and the kiddos
September 25th, 2012
I want to apologize for not keeping posts regular here. Have you heard that before?!?
In all seriousness, this is bad for two reasons:
One, we tend to operate well when times aren't as "needy" with God, and don't share our times of praise together as often as we share our struggles. This is not to say that we haven't been praising God immensely for Josiah's calm season right now, it just means that we haven't proclaimed it to you as often as we should. Which leads me to the second reason this is bad:
We have many who care about Josiah and pray for him and you should get to know how he is doing! So for both of these reasons, we want to tell you all that this has by far been the best month of Josiah's life. Praise God that Josiah has felt good, has been smiling and laughing a ton, and even learned how to roll over! (Although this may be his "third" time to learn it, and he doesn't do it all the time,...and it can be a real struggle, he has done it!) He has been laughing and active and awake more, and apparently he really likes rumble strips on the road. We were driving home one day and hit the rumble strips prior to the stop sign, and even though we thought he was sleepiing soundly in his car seat, he squealed in great delight when he felt the car shake and the noise and vibration travel through him. We are praising God for the little and simple things like rumble strips these days.
On other fronts, we still continue to follow up with his many doctors, but not as often. His spinal cord looks good for now, and we are clear through neoursurgery. He does have some follow up to be had in endrocrinology, and he still struggles to gain weight. He has made it to 18lbs finally so praise God for that. Small, but at least moving in the right direction. We did however want to ask for prayers for Josiah for his appointment tomorrow. Josiah's scoliosis is still his primary battle and we will be seeing our Ortthopedic surgeon tomorrow for a new xray and to talk about next steps, if any. We have known that this appointment is kind of a big one to us, because it really sets the tone for how we move forward from here for the good of not just Josiah, but everyone in our family. This journey has always been about that. Josiah's life and our decisions have always affected everyone in our family and we don't take any decision we make lightly. So pray...if you would. Praise God first that Josiah has been feeling better and laughing, and smiling, and remember to thank God for creating rumble strips! And then join us in prayer at 11AM for his appointment. We are still always praying for a miracle of healing and KNOW God could do this IF He wanted too, and IF that was the best way to display HIS GLORY. We want, and have surrendered Josiah's life to be used for the way God wants to use it. Pray that we would be okay with whatever that is, for however long that is.
Thank you as always for your prayers, thoughts and letting us share this together. We have been so blessed by a family and church family and friends that have surrounded us with love and care. Grace to all of you!
Craig, Kari and the kids
July 12, 2012 10:15AM
Yes, it has been a while since an update, so this will be a little longer of a post. Let me first say that I appreciate those of you who continue to keep Josiah and our family in your prayers. Thanks for following this journey with us, and I apologize we have not been as good with the updates. It has truly been a long two years and sometimes the hussle of life keeps us from sitting down and posting. I will try and be better about this. As someone reminded me in our church family about Josiah...."He's not just your child ya know...he's all of ours." We are so grateful that others love and care for him as deeply as we do.
So...Currently Josiah has yet another case of Pnuemonia. This would be his 3rd case this year and doctors wonder if he truly ever shakes it completely. An xRay Tuesday showed that both of his lungs were collapsed at the bottom. Josiah began getting sick with the heat last week, and struggled to breathe in such heat/humidity..., this was not the reason for the pneumonia completely, but it certainly didn't help and only intensified things.
Pray for us...what prompted us to bring him to the doctor this time was a bit of a scary moment as he was found choking in his crib on mucus that he could not clear on his own. This was one of those harsh realities of the struggles he faces. Thankfully we were able to clear the obstruction and get him breathing again, but with his aspirations, low muscle tone and severe scoliosis...his lungs are being compromised.
We are faced with several different decisions at this point regarding procedures/surgeries that will address these issues, but as always the case with Josiah, none of them appear to be easy and/or the silver bullet that will "fix" everything. We continue to trust God for a miracle and ultimate healing. Our little boy has...and will continue to struggle through life until this happens. But we know God designed him just as He is. So only God can bring about change.
Through this whole journey God has continued to provide grace and strength to us, and thankfully we have never questioned two things we hold true: His goodness, and His love for us. While we haven't always understood, and believe me, it hasn't ever "felt" good, we know with all our hearts that God is using this for His purposes. We know and experience God's love and faithfulness, but have also experienced the weariness of the journey. We are tired, but we still have faith. We are weary, but we still hope.
Join us in prayer as we look to God for the right decisions medically. We know we can't make these decisions by our own strength, but instead need God to give us direction. He is in control, and this will go the way He wants it to. It is for our good. (Romans 8:28) We cling to the promises of 2 Corinthians 4.
Thanks for your love, and faithfulness, and prayer support. We can't do this alone, and God never intended for it to be done alone. We love our family and friends and your support and encouargement has always been of such deep value to us. While there may not be much you can do at times, and no words to say, know that just being there for us, ready to help and listen is such a treasure to us.
With great love,
April 23rd, 2012
Alright. It's been exactly 69 days since the last post. I would be surprised if anyone is reading this for that very reason.
However, it has been good that you have seen posts! That's why you haven't. We have been in one the calmest seasons with Josiah that we have ever had with him. We are praising God for this! God has provided a season of rest and growth for Josiah. He smiles most days and has been in such a great mood.
We also found out today that he weighed in at 17lbs!!!! That means he skipped past 16 like it didn't exist. You would have to know Josiah to know how big of a deal this is. That kind of growth has never happened for him, and again, we are thrilled by it!
Thank you for your continued prayers. While we believe Josiah has a long road ahead of him, we also believe that this is the year of miracles. We are praying for Josiah's complete healing. God is big....much bigger than our biggest prayers. And we think this is a BIG prayer. Will you join us?
February 14th, 2012 9AM
Okay...I do apologize to all who keep up with following Josiah's progress. I haven't posted in two months! Sorry about that.
One reason for this is due to the fact that we were blessed with an extended vacation from the end of December to the middle of January. We went somewhere warm and Josiah did excellent with the high temps and humidity. He has been breathing and sleeping very well and has managed to keep the yucky stuff away. We are praising God for a generally warmer winter (sorry to all who love the snow and freezing cold...you guys are crazy)
Since our return we have had many follow up appointments for Josiah, and most importantly figuring out a plan for treatment on his scoliosis. This Friday, the 17th, we will travel to Shriner's hospital in Chicago for a consult with an Orthopedic Surgeon, and a Scoliosis Specialist. We are seeking to gain wisdom on the best path of treatment. This very well could mean a year long process of the body casting. This would require Josiah to go in every 7 weeks into the operating room for a new cast and a few days in the hospital each time. The other option is surgeries over the next 9 years...and finally the other option being to do nothing.
We are praying about all this, and pray the Lord will lead us to the right thing at the right place for Josiah.
In the meantime, he is wearing a hard molded plastic brace for his back. He does not like it one bit, and is happy to go without it.
He has maintained fairly good health these last few weeks, but still struggles to gain weight. He is only 15lbs 11oz as he approaches the 21 month old mark. We added doctor number 13 (an Endocrinologist) to the team to investigate growth hormone deficiency. Let's just say that all options are alwys getting exhausted. Everytime we think we have done that...they come up with something else. This helps Kari and I with our medical degree pursuit though.
Josiah will have numerous test and procedures over the next month, so be praying for this. He has scheduled an EEG (for seizures), an MRI for his brain and spine, a possible Endoscopy for his throat, and most likely many blood draws to come with it. There is also talk of another surgery for his reflux. We are praying about this too.
Well that's all for now. I will be posting after we go to Chicago and hopefully we will know more about his treatment plan.
Thanks as always for your continued prayers!
Craig and family...
December 13th, 2011 10PM
I see that it's been about a month since my last post. Well, unfortunately I could start this one a month later the same way...
Pnuemonia. No good. But this time we are staying over night at the hospital...which is waht we were trying to avoid. Josiah seems to have caught a bad viral case of it that needs to run its course, and he needs to just shake all the stuff that comes with the cold and flu season. He is pretty tuckered out, so pray that he can get rest so he can recover well.
On a seperate note, we learned that Josiah had a small change in a brain scan they did, and we are praying that nothing develops here further. After having any kind of spinal surgery, it is common for some problems with the CSF fluid to develop around the brain. We are hoping that nothing progresses here and ask for your prayers on this.
For now, we add one more hospital bracelet to the collection. Hopefully we will come home tomorrow. Hopefully...
November 14th 5:05PM
Pnuemonia. No good. We had feared that going into the cold season when all the sickness started going around that Josiah would struggle with staying healthy. For now, he is on meds to fight off the pneumonia and hopefully can shake it soon. Poor guys immune system is just not that strong. Pray he can make it through a winter without a trip to the hospital.
On a scoliosis update, it look slike we most likely start body casting in late January to obtain correction. We have chosen to stick with our doctor in Madison and he and his partner are confident they can obtain the desired correction, For now, continue to pray for Kari who is EXHAUSTED! Taking care of Josiah is a full-time job, and sometimes its around the clock when he's sick. Pray to for emotional strength. This kind of care can be draining.
God is still faithful in all of this...just have to keep believing in His perfect plan.
November 2, 2011 2:05PM
Just thought I'd give a brief update. First of all, today our oldest boy Jeremiah turned 7 so we are praising God for his life and will be celebrating this all day. Where does the time go???
Now unto the little brother...
Yesterday he weighed in at only 15lbs. This was dissappointing because he lost some weight. He has been struggling with keeping food down again and with a bad cold/cough this last week...it hasnt helped. Pray for sleep for Kari...she is exhausted.
We are currently praying and exploring some options for second opinions into Josiah's treatment so be praying that we will let the Spriit guide us towards wise decisions. I'm sure you can imagine that we just want to provide the best chance at correction for his back in knowing the long road it will be. We are looking at Shriners Hopsital in Chicago and Mayo Clinic in MN. There are some different options for scoliosis treatment so we want to investigate the best option.
For now, God is preparing us for the next step in this. We are praying that He will give us continued peac and strength to face these challenges. We know he will. We have not given up on God's healing power either or a the possibility of a miracle. If God would do this for our boy than PRAISE HIM! if He has other plans...then PRAISE HIM.
Thanks for your prayers. We feel them.
October 13, 2011 9:40AM
Its been about a month since our last update. For two months really, we have had a calm season of waiting on any improvement that would come in Josiah's life....both from his spine surgery...and also developmentally. His days are ones of slow progress...Yesterday we were faced with yet another challenge. After weeks of waiting on what the spinal surgery would do for Josiah's scoliosis, we finally met with our Orthopedic surgery yesterday. Let's just say that we had hoped for better news. The curvature has not gotten any better, and our doctor does not want to wait any longer to treat it. Josiah will start off in a plastic torso brace full time, but our doctor believes that this will only maintain the curve and not obtain any correction. Our doctor also believes that surgery is a most likely outcome in any case.
This particular scoliosis is pretty serious from his perspective and cannot go untreated. We will see how the brace does, but to obtain correction, Josiah will most likely have to undergo a year of body casting. This process was a little more agressive than we had known and so it was a hard thing to think about for us. We struggle to think of Josiah experiencing pain and suffering in this way.
Pray for us. Our emotions were stirred up again after a couple months of calmness. We had expected to hear some good news, but that is not what happened for us...so we will continue to trust God and take a day at a time. Our doc said this would be a long road for Josiah...this we know all to well.
Josiah is a strong boy...much stronger than his parents. We struggle to recieve such news, especially when we find ourselves often hopeful of a different outcome. Faith is most certainly a process...and ours is constantly being tested. One day at a time right? Jesus said tomorrow has enough trouble of its own. We agree. So towards this end, pray that our family will experience joy in the day to day...and try not to head down the long road that we believe we are on.
If we keep looking down the road...we will most certainly miss what is right within our reach.
September 16th 8:30AM
Haven't updated in a while so I thought I would. Not a whole lot to report other than Josiah has taken a little dip in his weight. This of course is not the direction we wanted him to go, but perhaps it is just a momentary set-back. We are looking into switching him over to a higher calorie diet and figuring all that out. Josiah is scheduled to see our orthopedic doctor in a few weeks and this should start the process of the first step for correcting his back. This will most likely be a plastic torso brace...we will see if this can help. He is in some pain with some teeth that arent coming through and have formed kind of a "hematoma" as they call it. Hopefully this will resolve itself soon too. On a most exciting note, I (Craig) was able to share our story and journey this past 15 months with students at Emmaus Bible College in Dubuque, IA during their Spiritual Emphasis Week. I was able to share honestly with them about our struggle, and how we have learned to trust more fully in God's great love and faithfulness to us. I pray they were blessed. I know I was as I reflected back and was able to praise God for how faithful He has been, and how much grace He is supplied to our family during this trial. He is Faithful indeed. Your prayers are always so appreciated, and we can trust that they are heard. Thanks for your continued love and support.
August 24th 8:15PM
Just a quick note to tell everyone Josiah is doing really well since his surgery. A lot of smiles, still gaining weight, and we are enjoying a little season of peace. We go back to his follow-up appt. with his Nuerosurgeon tomorrow and a new doctor (#11) for some new physical therapy methods, so check back again soon. But for now...we are saying...YEA GOD! Please check the most recent picture in the middle box of his big smile!!!!
August 17th 8:30AM
Just a quick note to let you know that Josiah has been at home for almost a week and he is doing well. A lot of smiles...not much pain at all...and the only bad part...NOT TOO MUCH SLEEP! For some reason he likes to stay awake all night now. Don't know what this is all about. Continue to pray. Today we will see a nuerologist to follow up from his EEG test. Pray we receive good news.
August 12th 1:15PM
24 hours since my last post. Sorry. This should be considered a good thing though. Josiah is going home finally and they are working on the papers now. Hopefully we will be able to stay away from here for a while. We have numerous appt's coming up in the near future, but for now we could go with out any hospitalizations. Thanks again for your prayers, the meals, and all of the love/care/concern/thoughts/support/etc. We are blessed! Pray specifically for some rest for everyone in our family; ESPECIALLY KARI, and a return to "normalcy" around our house. May God continue to bring glory to Himself in Josiah's life!
P.S. The Bears play their first game tomorrow. Thought you'd want to know...
August 11th 12:20PM
Josiah's blood cell count is back within the normal range. Kinda wierd, but not so weird if our prayers were answered...which is what we will go with. They are keeping him one more night to make sure he is okay, so that's not very fun...but we also don't really like to do the back and forth thing either. So for now, he is on the path to be going home.
One more day...one more night...
Thanks for praying, checking updates, and just caring about our little guy!
August 11th 11:15AM
We are waiting for some more labs to come back and talk with our Dr.
No new updates quite yet. Hopefully we can figure this thing out!
August 10th 7PM
Well...kind of a bummer, but at about lunch time today we took Josiah back to Children's Hospital to see his NeuroSurgeon. We felt like he was sleeping excessively which alarmed them. After some blood tests, and a "quick brain" MRI to rule out fluid/or lack of near the brain (Which praise God it came back clear) they found he had an elevated blood cell count. This earned him an admission to the hospital again. They are watching and will do some more testing. This most likely will include a spinal tap :(
They need to make sure it is not menegitis. They are a bit puzzled by all of this, as some things are "not making sense." We are thankful they make sense to our Creator though. Please pray for us. Sure, it is exhausting to drive back and forth to Madison...and hospital stays are never fun...but what gets us is watching our lil guy suffer through needle pokes and brain scans, and spinal taps. It is also exhausting to mentally/emotionally prepare for the worst of news. While we try not to "fear" the worst, whenever they take him for a test like a brain MRI...we get ourselves emotionally worked up. Pray that God continues to show us peace and that as hard as it is...we TRUST HIM.
August 8th 5PM
GOING HOME! Loading up the van and headed out. Josiah had a great day and it is time to go home and rest! To God be the Glory for what he is doing in Josiah's life! Praise Jesus!
August 8th 10:30AM
Check out the pic in the top box in his Cubs shirt. Kari is finally holding him and I think he likes it! >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
August 8th 10AM
Josiah had another good night of sleep. He still needed some breathing treatments through the night, and we will have our ENT Consult (Ear.Nose.Throat) this morning...but our Neurosurgeon came in and gave the go ahead to finally hold him. up until now, we haven't "handled" him at all. So we will see how that goes and if it goes well we could be coming home soon. Amazing. My guess is that he would leave tomorrow AM. Just a guess though. We try not to make these about Josiah. Thanks again for your prayers and we'll let you know what comes from today. God is faithful, loving, and in control.
August 7th 8:45PM
Not much to report. Josiah continues to sleep peacefully and they did start his feedings back and he is tolerating them well. We will have our consults with the docs tomorrow. Thanks again for your prayers. Continue praying that Josiah has a speedy recovery as they try and wean him off of the pain meds slowly. Good night!
August 7th 2PM
Josiah just transfered out of the PICU and is back in a regular room. He continues to sleep peacefully and the faithful prayers of God's people have been answered. They have a few tests they are running regarding his feeding tube placement, and consulting a team about his breathing, so we will wait to see what happens there. For now, he continues to rest well. We will keep the updates coming! Thank you again for your continued love and support.
August 6th 7:30PM
Josiah is still resting well and hopefully will move out of the PICU tomorrow. He has had some breathing treatments that are helping him breathe better and is headed in the right direction. He still needs to start eating again, but one thing at a time...now I sleep! Thanks for all your prayers. They are felt and heard. God has given our boy relief. Yea God!
August 6th: 2:15PM
Wow. Thanks for your faithful prayers. Josiah has been sleeping PEACEfully since this morning around 9. Pain seems to be managed and he is even breathing much better thanks to the great care of his nurses and doctors. They will keep him in the PICU for another day and then we'll move again back to the regular floor. For now, we are just thankful he is resting as this will be his best way to recover. I will try and update later. Kari and I were able to eat some lunch outside and enjoy the sun. Then we will get some rest in. Josiah still needs to wake up and start the transistion to eating again so pray he will adjust nicely to this. More to come soon.
August 6th: 6AM
I know many of you will not be shocked by this news, but it just seems it goes like this for Josiah...
During the night Josiah took a step in the wrong direction. From about 11PM till about an hour ago he was in severe pain that they could not control even with an excess of pain meds. Nothing seemed to be working. So at about 4AM they moved him into the PICU so they could give him stronger meds and be able to monitor him better, The risk of more heavy pain meds is respitory distress, which in Josiah's world is a danger zone anyway. So for now they have his pain under control and are watching him closely. It was a rough night and Kari and I are exhausted. More Kari than me. It was extremely tough to watch him scream for 5 hours straight with no way to stop the pain. I would ask you to imagine the emotional strain to watch your child suffer in immense pain, but it's unimagineable. I don't say this for our pity's sake, I just say it in asking you to pray harder. Kari and I know what God is bringing us through, but also know that Satan is working against our son, Under God's allowance no doubt...but it seems the more people pray, the more the attacks come harder. So pray harder. Pray more. Not that we haven't experienced the whole scope of emotions, but tonight was again a low night of just being close to giving up. We trust God is still faithful thorugh this...it just doesn't "feel" as easy as it always sounds. That's our humaness for ya.
So for now, Josiah has had yet another of his many set-backs in his life. But he we will bounce back again in due time. As you may have guessed, getting downgraded to the ICU is not how you get out of the hospital any earlier. But, Kari and I also have learned not to go by "estimates" on Josiah. He never does what anyone "predicts" he will do. He lives in the "small perecentages"...
Please pray. Pray for peace in his little body. Peace from pain. Peace from suffering. Peace from needles, and hoses, and all the annoying stuff that comes with feeling yucky. Peace.
He's sleeping now finally. Let's hope it continues.
More to come later.
August 5th: 9:30PM
Sorry for the long delay between posts. After surgery the kids came to visit their little brother and we had some other visitors. Kinda got crazy. We are finally ready for bed after a long day. Josiah has been doing okay. They finally got his pain under control and he has been able to rest better. He has been very uncomfortable and we are unable to hold him since he has to lie still on his back. This is hard, because we know he wants to be held! Everything seems to be going well and we are praying for a quick recovery. He feels yucky for now, which is expected, and hopefully will come to life a bit tomorrow. What a strong spirit in this boy! He will hopefully start eating again tomorrow to. They have not wanted to push this. Your prayers have been so appreciated. I am sure many of you have been checking this throughout the day and waiting for updates, Thanks for your patience! Hopefully tomorrow is quiet and uneventful! Off to bed now...Thank you Jesus!
August 5th 12PM
Josiah is out and doing well. Praise God. Our surgeon saw the cord release and time will tell on how this helps his back curvature. She didn't have to remove much bone, so that was also a praise. He is tired and groggy and resting by his momma. He may experience some headaches so pray this isn't uncomfortable. The incision is about 1.5 inches, and for now he has to lie flat on his back. We are headed to our permament room soon and will update later. God is good and faithful. Thanks for praying. Continue praying for a speedy recovery!
August 5th: 11AM
Nurses just checked in and they are winding down the surgery. He is doing well and our Nuerosurgeon should be coming in about 45 minutes or so to let us know how things went. I'll post again after we talk with her. It may a bit, because they will probably be moving him to recovery right away, but I will do my best. Thanks for all your prayers!
August 5th: 7:15AM
Just a quick update (please read below) if you haven't gotten to this yet...Josiah's surgery will be at 8:15ish and scheduled until 11:45. We will update as often as we can. Our Doc is Dr. Taryn Bragg. Pray for her and her team. Pray too that she would know Jesus through our lil Josiah!
August 5th: 6:30AM
Just wanted to let you know that we are waiting in a pre-op room...which means we think this surgery is actually happening. Pray for God's peace and strength. Every time we arrive at the doctor or hospital for an appointment or procedure Kari and I hold hands and pray before we leave the car. This morning was no exception, but especially hard as all the emotion of the past 14 months came into play. We continue to trust God...that's all we have. We are reminded of a verse that hangs on our bathroom mirror as we go into today...Romans 15:13..."Now may the God of HOPE fill you with all JOY and PEACE in believing, so that you will abound in HOPE by the POWER of the HOLY SPIRIT.
Okay folks...looks like surgery will be at 7:30am tomorrow morning and we will be checking in at AFCH at 6:15. Is this for real? We have yet do see it to believe it. In fact, I would check back thorughout the day as you never know.
Maybe sometime, I'll share the full story when I am calmed down about it, but I just wanted to share that last night we spent the better part of the evening/early morning in the ER at Children's in Madison as Josiah's Feeding Tube came out. After many hours they finally got it back in, but it was a pretty traumatic and painful experience for him. We just pray it never happens again. So...if there would be any reason surgery would be canceled...that would be why. Never a dull moment in our house, but we are still trusting Jesus in all of this. We are THANKFUL for grace, peace, and provision. We are also thankful for you. You pray, support and love. We are blessed to have these things as we journey together. Thank you, and I will update soon! Hopefully from a pre-op room tomorrow!
July 28 2:30PM
Just wanted to update you with some exciting news. Josiah weighed in at 14 1/2 pounds the other day and we got his bloodwork back with a low wbc count finally! For now, the Lord has blessed him with some extra weight and no infection. Be praying still...surgery is next Friday already! Thanks for your continued love and support!
July 21 11 AM
Looks like the new date for Josiah's surgery will be August 5th. The new saying..."4th time's a charm!" Thanks for your continued prayers!
July 18th, 3:45PM
So...just wanted to update all of you that Josiah's surgery for tomorrow has been CANCELED...AGAIN! What is God up to here? We do trust that these are His delays for His Sovereign reasoning. Kari and I had held this date loosely knowing that in true Josiah "form" there was a possibility it wouldn't happen...and it isn't happening! At least not tomorrow anyway.
So why did it get canceled?
We finally found out the cause of his high wbc count. On Friday we noticed his belly button looked swollen and maybe even infected. His belly button is where they surgically inserted the laproscope (camera) for his feeding surgery. Apparently they had put dissolvable stiches in to close this from the surgery and we never knew their were stiches in there...especially ones that never dissolved properly. So on Friday, our doctor was able to pull out the stitches that should have been gone weeks ago. This of course caused a bacterial infection and has finally given us the right data for treatment and the reason for the high count. So...he will be on the right antibiotic that fights this particular bacteria, and they will reschedule the surgery when he is clear of infection. Continue to pray! It has been a wild ride! Until next time...
July 13, 2011 1:30 PM
Glory to God for His faithfulness! Even in the midst of our struggles, He continues to provide for us and prove Himself as the God of Provision! A Couple months ago we applyed for Medicaid for Josiah to cover many of the expenses that our insurance doesn't pick up. They told us not to get our hopes up on hearing or being approved until the fall of this year (if we would even be approved). Today we got that approval!!! This is a huge provision for us, as mediacl costs have started adding up. Praise God! Praise God!
Josiah is still set for Tuesday's surgery, and we trust God will be watching over Him through this. Continue to pray. We have had a sweet time together as a family the last 3 weeks and Josiah has been growing...now we need to just get past this next hurdle!
July 7th, 11:15PM
HUGE PRAISES TODAY! Josiah went to the Hematologist to investigate his high WBC count and our doc thinks he just has a new "normal" and checked everything else out and gave him a go ahead for surgery. She will consult with our neurosurgeon, but for now July 19th looks good. But that's not even the great news...Josiah weighed in at 13lbs 13oz!!!!! I never thought we would be so excited to see those kind of numbers on a 13 month old, but for Josiah that means he gained the most wieght he has ever gained in a week...just about 1/2 pound!
So do you know what I think....actually do you want to know what I KNOW. God in his prefect plan delayed Josiah's surgery with a crazy blood cell count so he could gain more weight. I just know that God is working and controls all the details. In our human understanding and in the doctors finite wisdom, we all planned a surgery that made sense for a little guy that didn't have much extar weight on him. God in His INFINITE wisdom caused delays in order to have him gain a bit of "chub". His time to gain strength these past three weeks have been a huge blessing and will only give him a better chance for recovery from the surgery on the 19th. WE PARISE GOD for his grace in this calm season. We know that we have hard days ahead, but God has provided us all with good rest and great family time for now. Thanks for your continued prayers. God is in control....and that's not just a cliche comment. He really is!
July 5th, 1:45PM
Please be praying for some upcoming appointments in the next two weeks. We will be fitting Josiah with some new shoes for his feet, doing an EEG with our neurologist and swapping out his feeding tube with a new one. Praise be to God though for some signs of weight gain. He is past 13lbs for the first time in his life! Pray for more growth!!!
P.S. Josiah has always liked bright light up toys that help with his vision and last night he REALLY liked the fireworks!
July 1st 10 AM
Just wanted to ask for prayers for many upcoming doctors appointments. Because we won't be doing the surgery for three more weeks, we have to catch up on more tests an appt.s for Josiah. He will have several in the next few weeks so be praying! Thanks!
June 29th 10PM
Surgery for Friday is officially canceled due to Josiah's high WBC count. He will be seeing a hematologist to find out why this is high, and "for now" the surgery is rescheduled for July 19th. Please pray that we could endure this roller coaster ride of preparing for somthing mentally and then watching it delayed. Pray that we would trust that these are God's delays and even that He could heal making surgery unnecessary! Thanks for your prayers!
June 29th, 2011 9AM
For now, it looks like surgery is still a go. We will update this post if something changes. Please pray for a skillful hand for our NeuroSurgeon Dr. Bragg at the AFCH and a speedy recovery. Josiah will have to be flat on his back for 3/4 days. Pray too, for our other 3 kids...this wears on them.
June 28th, 2011 4PM
Just wanted to finally have a spot where you can check updates about the journey we have been on with our 13 month old son Josiah. This Friday, July 1st, he is scheduled for surgery to "un-tether" his spinal cord. he will remain in the hospital for about a week following the surgery. Right now, we are waiting to hear about whether or not they will proceed with this surgery as scheduled as his white blood cell count (WBC) is still abnormally high. The risk is too great to do a surgery with the WBC being high, so we will keep all of you posted on what happens in the next couple days.
If you want to read more about the journey so far...please read about his summary below.
Thanks for your continued porayers and check back for frequent updates!
pastor craig, kari and family
Josiah's Journey began on May 30th of 2010 when he was born a month premature. After birth, he spent 19 days in the NICU with breathing issues and feeding issues. He was also born with bilateral club-feet which were casted for 12 weeks and concluded with his first surgery (heel cord tenotomy...cutting of the achilles tendons). We praise God that his feet are now straight!
However, challenges continued for Josiah in the coming months as he struggled with hospitalizations for pnuemonias and RSV. We found out through a test that he was apsirating liquids into his lungs when he ate...
Josiah currently is 13 months old, and weighs only 13lbs, cannot hold his head up and has decreased muscle tone throughout his body. In May a feeding tube was placed to help encourage weight gain and eliminate aspirations. This seems to be helping.
Along with the feeding/digestion issues, Josiah also suffers from severe scoliosis(60 degree curvature of his spine.) This makes many routine motor skills a challenge for Josiah. The prayer is that his upcoming spine surgery will help to relieve or even correct this for Josiah.
We are uncertain of his future, and have quite a road ahead of us, but we trust in God's sovereignty and know that God made no mistake in forming Josiah (Psalms 139). Josiah is a huge blessing to us, and we praise God for Him!