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Hayden's News & Events

Please continue to check Hayden's News & Events for prayer requests and updates.  We will update as often as possible to keep everyone informed.  We would love for you to bookmark Hayden's page and become a regular prayer partner.  God Bless!
 
"I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!" Isaiah 65:24

 
 
 
 
 
Tuesday, October 22nd, 2013
As always, I feel behind on Hayden updates and seem to only be able to copy & paste facebook status. This of course is not what this website was intended for, that's why I always feel badly; although at times it's the only way to keep this site updated as I can't access the interior of the website (to make changes) from my phone. I hope and pray that Hayden followers will understand and forgive me. With that said, let me catch you up on Hayden.
 
Hayden has been able to stay out of the hospital since August 1st, which makes us hospital free for a little over 2 months now; Hallelujah! If you follow Hayden closely you'll know that after this past year, 2 months feels like so much more! Literally in the last year (since August of 2012), Hayden has been in the hospital 10 of the past 12 months; it's been a really rough year. Hayden is doing ok, he stays "junky" in his lungs and is producing large amounts of mucus, he's also still having bouts of pancreatitis, and occassionally still battles with his stomach not processing feeds correctly (or at all). One of the bigger issues is that Hayden's seizure device (the VNS) has needed a battery change since about January, but he was too sick to undergo the surgery to replace the battery; and honestly it wasn't as much as a priority as the things that were trying to kill him (like his spleen). We've been trying to give Hayden some "well" time to recover from all he's been through in the last year, before we rushed him into another surgery. It seems at this point, with all of his seizure issues being out of control (as the device is not working), that the time has come for us to move forward with this surgery. We've already rescheduled this surgery at least 5 times, I think Hayden has been letting us know that he hasn't been ready. We're hoping to schedule this again (and be able to do the surgery) the first week of November. Your prayers for guidance, God's will, and discernment would be greatly welcomed and helpful!
 
It's easy to forgot that the first initial year after his accident, Hayden went 3 years without one single hospital stay! That would be our goal! To get this young man "healthy" and to keep him healthy! We really miss the times when we could get out as a family, go to dinner, the movies, church; we weren't as bound to home as we've been this past year. We've experienced it once, so we know it's got to be possible again. Would you please join us in prayer that Hayden begin to heal, that God would relieve him of all that he suffers (seizures, pancretitus, stomach issues, respiratory infections) and give us time to be a family again. It took a long time to get used to "this is our situation, this is our walk & now we've got to walk it," to get beyond the shock, damage, and shattered life as we knew it; we did find a new normal though. In the past year we've lost that "new normal" as it's been so chaotic and filled with suffering and sickness for Hayden. No parent wants to watch as their child suffers. God has been so very constant, and faithful in our lives; without Him we'd have lost our way a long time ago.  You faithful prayer warriors are so awesome, there's been many times when Hayden is on the verge of going to the hospital, or even on the verge of death, and you've bombarded God's throne with Hayden's name. I believe with every ounce of my being that Hayden is still here for a reason (that only God knows) and I'll happily take every blessed second with my first born that God graces me with! 
 
Hayden turned 21 in August...that just blows me away! He should be enjoying his Junior year in college, pursuing his dreams, possibly dating, planning his future. Although it is sometimes hard to overlook all that he has missed out on, and all that we as his parents have missed out on seeing him do/accomplish/achieve, God's grace helps us enjoy each day that this shining/amazing spirit is still here on this earth. We love each of you dearly, cherish every prayer and kind word you've  sent our way. It's been a long journey and we could not, would not, have made it this far without you.  Please stay in the fight with us, don't get weary, or tired of the endless requests for prayer for Hayden; you are our army, our prayer warriors, intrically entwined with our hope and ability to move forward each day. We've always maintained that, "as long as Hayden is fighting to be here, then we'll be right there fighting along side of him." Our fight isn't over yet, our "walk of faith" is still a work in progress, and we rely on all of you for strength.
 
Thank you for letting me ramble, for staying the course with us, and for praying for our Hayden! Thank you for always being willing to lift Hayden's name up at each and every request!
 
 
 
Monday, October 14th, 2013
Just wanted to share some random math with you...
Hayden's accident happened on March 31, 2007 & he was given LESS than a 1% chance of surviving...
That was 2,389 days ago
Or 6 years, 6 months, & 14 days
Or 341 weeks & 2 days
... We count EVERYDAY A MIRACLE...truly a blessing to witness a miracle every day!
 
Saturday, October 12th, 2013
When I got up & went into the living room this morning, I found Hayden with 3 kitties in bed with him. I was only fast enough to get 2 in the picture, but it was very cute! — with John Stanley.
 
Wednesday, October 9th, 2013
New Day, New Hayden! I absolutely can't explain how he has days like the last two & then wakes up on the third "normal," except to say that God is good and you prayer warriors are the best we could ask for! Praising our faithful & loving God & Thanking every single one of you who lifted Hayden in prayer!
 
Tuesday, October 8th, 2013
4 Grand Mal's in one day, coupled with many smaller break through seizures, has made for an insane day! Praying for a better day tomorrow! Time to get moving on surgery plans, guess we've put it off too long.
The surgery is to replace the VNS device that helps control/prevent/stop seizures; the battery is dead & it's not working. We were trying to give him so time to recover from everything he's been through this last year before rushing him into surgery. Thanks to all for the prayers!
 
Friends, we need your prayers; Hayden has gone from having crazy seizures yesterday, to running a fever of 103.8, vomiting, and prolonged high heart rate. We have officially begun the "ER watch. " Your prayers CAN definitely make a difference!
 
Monday, October 7th, 2013
Having to stand by & watch helplessly as Hayden has Grand mal seizures makes me very, very, sad. Not the best day for Hayden, or Momma...feeling sad.
 
Friday, October 4th, 2013
Hayden has had a GREAT week; he got to go to church on Wednesday night (he tried really hard to help Pastor Phil preach, lol) & out to dinner & target afterwards, then he had a botox appointment yesterday & lunch out with mom & dad after. It's so awesome when he's well and we can get out of this house... together! Praising our Father in Heaven for answered prayers!
 
Sunday, September 29th, 2013
I can honestly and humbly tell you that this is 100% true!
Amen!
 
Thursday, September 26th, 2013
Just hangin out with Mr Hayden tonight. Boys night! 
 
Sunday, Septemeber 22nd, 2013
Beautiful Sunday afternoon, Hayden seems to be having a good day, all my babies are under one roof, watching the Cowboys game with my boys...all is well with my soul! Thanking God for the small blessings (that feel huge in my world) today!
 
Tuesday, Septemeber 17th, 2013
This is Hayden, my Rockin Base Player Rockin out to some Led Zeppelin. He stopped rockin as soon as the song stopped, (unfortunately we weren't quick enough to catch more than this), it was so awesome to see him do this! Since he was so into music we play music for him most every day, all afternoon, & we play all of his favorites.
Hayden is rockin to some Zepplin this afternoon.
 
Saturday, August 24th, 2013
Despicable Me 2... guess who's at the movies! Love family time. This is our first family outing in over a year. Thank you, Jesus!
 
Friday, August 23rd, 2013
Hayden has progressively gotten "junky* in his lungs this week, headed for a chest xray now. We wanted to err on the side of caution before the weekend.
 
 Update, Hayden's lungs are clear, I can't believe it! Guess it's all in the bronchial ' s. He sounds better today & had finally started coughing. Answered prayers!
 
Monday, August 12th, 2013
Mr. Hayden is 21 today! Not even going to waste time thinking about all he's missed, have kept myself busy today so my mind doesn't have time to wander the "what if" fields. Love this boy/man & am in awe of his strength, his will to remain on this earth! Blessed to be his Momma!
 
Beautiful & timely!
I read this scripture today:
“My grace is all you need, for my power is greatest when you are weak.” 2 cor 12.9

As you start this week, are you feeling overwhelmed, weak, insecure, unsure, broken? The good news: In brokenness, Jesus does His best work.

Be encouraged as you head in to this new week, knowing that your Savior is able to take your broken pieces and make the most exquisite work of art. So stop trying to fix it yourself. Hand over your pieces to the One who is strongest in our weakness.

Happy Monday. xoxo
 
Monday, August 12th, 2013
Hmmm... for Hayden!
 
 
Friday, August 9th, 2013
I really needed to be reminded of this today! There's an uneasiness, things I don't dare put into words... the past 11 months with/for Hayden have been brutal! It seems no matter what we try to do to keep Hayden well, everytime we turn around there's something happening that we have no control over & at this point it seems the Dr's are clueless/hands off. Praying for peace that only He can give.
 
Wednesday, August 7th, 2013
Haven't been feeling well this week, Hayden's stomach still isn't processing & he's only getting about half of what he should nutritionally speaking. Hayden's birthday is Monday, he'll turn 21, Paxton starts her junior year of high school on Wednesday, & Denton moves into the dorms at SBU on Thursday. This Momma could really use some prayers for strength & health for the busy, emotional week that's ahead.
 
Thursday, August 1st, 2013
On day 9 of Hayden's hospitalization, and we still don't really have any answers. Don't know where the infection is, why he's back to running a fever, and now his white blood cell count is slowly creeping back up. We've been working our way up slowly on feedings, trying to increase volume each day & his belly is tolerating most of it. There's been talk of them sending him home, they've removed his... catheter, taken off Iv fluids, and have been transitioning IV meds to oral. As tired as we are of being in the hospital, I'm honestly apprehensive about taking him home; especially since there are no answers & we're just praying his stomach will begin to process correctly (I'm concerned about dehydration & lack of nutrition). They will send him home with antibiotics for several weeks. I'm afraid he'll just end up back in the hospital in a week or so. Asking for prayers for all of these issues mentioned, and that if we go home soon that there will be some piece of mind about his health.
 
Well...scratch that...apparently Hayden is going home today. I don't know...Lord help us! The good news, we'll be out of here & able to celebrate Bobbie's life with our friends & church family!
 
Tuesday, July 31st, 2013
I didn't make any updates on Hayden for a few days, as we & most everyone we know were grieving for Bobbie, George, & the kids. While my thoughts are still focused on the Schmoele's, I must ask you for prayer for Hayden too. He started running a fever again, even though he's on 2 antibiotics. We don't really know what to think at this point but would appreciate your help in lifting him up.
 
Sunday, July 28th, 2013
They've turned Hayden into a science project today.
 
Saturday, July 27th, 2013
Well, we've had a lot of new things thrown at us in the last 15 minutes; starting genetic tests for cystic fibrosis, and an EEG with video tomorrow, also the possibility of doing the procedure to change his Gtube into a Jtube within the next couple of days...I must tell you though, that as overwhelming as some of this is, we're happy that they are paying attention & thinking outside of the box, FINALLY!
 
Saturday, July 27th, 2013
Barium study underway. Hayden is still having crazy seizures due to the meds he wasn't given for 2 days, so Daddy's trying to keep him calm. Praying for answers & a good day. The GI emptying study that was done yesterday showed that his stomach is emptying extremely slow (which we already knew, lol) now they're just trying to find the reason why.
Amen to that! I proclaimed this Very thing over Hayden yesterday!
 
Friday, July 26th, 2013
So...we had a bit of an issue yesterday; the Dr, or "hospitality," that was supposed to be treating Hayden just NEVER showed up yesterday. We repeatedly asked for the Dr, asked what was going on, asked why Hayden was just laying there in pain/distress & why no one was concerned, asked about the GI procedure that was supposed to be happening, asked about the seizure meds that he MUST have, & all we... got were "I don't knows." When we'd had enough & started getting frustrated we found out the Dr who was MIA all day, had canceled the procedure, & refused the seizure needs, without ever consulting us. Due to her neglect, Hayden was going through serious withdraws yesterday creating a whole new issue & set of symptoms; baclofen withdraws alone can be life threatening, but we're talking about 4 different medications at once. It was a horrific day for Hayden, John, & I. Needless to say that particular Dr won't be treating Hayden today, or ever! Thank you to our night charge nurse for jumping in quickly & taking care of everything. Within an hour she had the meds to Hayden & a new Dr for him. Thanking God for putting her in the right place at the right time! GI study will be starting at noon & supposed to take about 2 hours. Also, infectious disease department is now following Hayden due to fever & still elevated white cell counts; starting 2 antibiotics today. Everyone is thinking pancreatitis is the culprit for most of his symptoms, now trying to figure out why his belly isn't emptying.
 
Thursday, July 25th, 2013
Hayden update: he was admitted yesterday due to his symptoms & a really high white cell count (sign of infection). With all of the tests they did yesterday, they still can't find the source of the infection. On the cat scan his pancreas looks inflamed (& still has cysts), but his pancreas enzymes are normal (makes no sense, right). Several tests have been ordered; a GI emptying study with dye, als...o a GI endoscope (which will require anesthesia). These will hopefully take place today & tomorrow. Nothing will go into his belly until all of this is resolved & they have answers as to what's going on. His fever seems to be gone, which is wonderful. Right now Hayden is very restless & uncomfortable, he seems to be having pain issues, but we have no reason/idea why. Praying for comfort & answers for our boy today.
 
One sick baby in the hospital & two sick babies at home. Thank you to my sister_in_law (Lisa Ledbetter) for stepping in the gap & taking Denton & Paxi to the Dr yesterday, for picking up their prescriptions, for feeding them, & making sure they were taken care of! My mommas heart thanks you! It truly means the world to me! Love you!
 
Mercy hospital friends, who do we speak to, or where do we go to request a new "hospitalist?" Charge nurse? Patient relations? Somewhere else?
 
I think somebody should start praying peace, composure, & Godly words over me before the charge nurse comes in (lol, but seriously!), Momma & poppa bear are about to lose their cool. We're waiting to speak with her now, I'll explain after the conversation.
 
Wednesday, July 24th, 2013
Ok, imagine Steven Tyler singing, Back In The Saddle Again," only change the lyrics to, "Back To Hospital Again." Yep, that's where we'll be, 104.5 temp this morning with heart rates back up.
 
Xray, cat scan, blood work, IV, Adavan (sp?), they're taking this serious, working quickly & taking great care of him. The ER Dr keeps pushing for lumbar puncture, but we're holding out & waiting to see what the scans show. Thank you for all the prayers & kind words!
 
With some IV fluids his color is starting to look better & his fever has come down. Antibiotics going, guess his white blood cell count is really high, poor baby boy! — with John Stanley.
 
Friday, June 14th, 2013
At the Dr. office waiting to have staples removed from his incision (21 staples), praying all goes well. If any of you remember, after the baclofen pump surgery, when removing staples they ripped his incision open which started a horrific series of infections; so really praying today! Look how hansom he is! 
 
Thursday, June 13th, 2013
New wheelchair! New wheelchair, NEW WHEELCHAIR! So excited! Hayden just got it delivered & is trying it out! Thank you to all those special people who have prayed & donated to make this happen! Ozark alumni, you mostly made this happen & you are awesome! Thank you, thank you, thank you! It's perfect & completely paid for! Hallelujah! Praising Him too! 
 
Thursday, June 6th, 2013
Guess what! Yep! He's going home! 
 
Wednesday, June 5th, 2013
Closing of day 8 in the hospital with Hayden, 7th day out from surgery, exhaustion has definitely set in. First time up on his wheelchair since surgery & he made it a full 5 hours, which is awesome! Possible discharge tomorrow, depends on how he does tonight & what chest xray looks like in the morning. We would love to take our boy home tomorrow!
 
Tuesday, June 4th, 2013
My sweet Hayden is slowly recovering, especially for someone in his condition to have such a large surgery. He started having some seizures yesterday, but also started getting feeds again and seems to be handling it well. Thank you, thank you, for all the prayers, they're working! No word yet on a go home date & we're definitely not in a rush, just taking it day by day!
 
Sunday, June 2nd, 2013
Hayden Update: he's technically doing ok, no seizures yesterday or today. He's having low blood pressure issues, & his stomach isn't processing feeds at all (they stopped all feeding yesterday). Also, he's getting junky in his lungs & won't cough (we definitely don't need pneumonia). His incision looks good & his platelets are around 300,000; they haven't been over 100,000 in years. Thought I'd give you somethings to praise God for & some things to pray for. Thanks to all who are praying!
 
Friday, May 31st, 2013
Hayden is out of icu, we're a little nervous because he had a really rough night due to seizures & pain issues, but happy too.
 
We got news on Hayden's new wheelchair today, it ships Tuesday & should be ready for him next week; maybe in time to leave the hospital in. Thank you to so many who donated & helped with this! So excited! We've so been looking forward to this!
 
Thurdsay, May 30th, 2013
Hayden had a good night, having some pain issues this morning but doing good! The best news ever? He came off the ventilator about 30 minutes ago, completely breathing on his own (with oxygen). Thank you to all who support us with your love, prayers, & friendship! A special thank you to friends who visited & say with us! We are so blessed!
 
Well, Hayden will spend another night in icu, as a precaution. Love that there are excellent doctors & nurses looking after our boy! We're going to be grateful, look at it as a blessing, and believe that he's exactly where God wants him.
 
Wednesday, May 29th, 2013
Hayden just went into the big/main surgery, should be about 2 hours. So far everything has gone really well, no surprises. Thank you all for your prayers!
 
It's been 2 hours & we just got word that they are having to open up Hayden's abdomen & won't be able to do it laproscopically...totally bummed!
 
Hayden is out of surgery, he did good, & will be headed to icu.
 
"I know who goes before me, I know who stands behind, the God of angel armies is always by my side."

Have I told you lately how BIG our GOD is?
 
Tuesday, May 28th, 2013
BIG CHANGE in plans for Hayden...he will be admitted to St. John's early in the morning for a lengthy (4+hours) and complicated surgery (gallbladder & spleen removed, even with the platelet issues). They will try to keep it a laproscopic surgery, but 20% chance that they will have to open his whole abdomen. Trying to calm my heart and find common ground between wanting to keep my first born son he...re in his momma's arms (my own selfisness), and not wanting him to suffer or be in pain any longer (releasing him forever). It's been beyond incredibly hard to watch Hayden suffer over the past 6 years, but even more so over the past 10 months. I can't bring myself to pray that God take Hayden home, and it feels too selfish to pray that he continues to stay. Praying for God's will and protection over this whole situation, as it's the only way I can breathe. Needless to say, prayer warriors, we'll be relying on you more than ever; thank you for always being there.
 
Saturday, May 25th, 2013
GUESS if you're going to get stuck in bed all day, snuggling with a baby kitty can help make it better. So cute, this picture doesn't really do it justice.
Hayden has had a really bad week & is having a terrible day today. Poor kid is living on pain meds, isn't even getting half of the feeding he's supposed to (due to the pain it causes in his abdomen, he won't tolerate more), and is having crazy amounts of seizures. Just don't know how much more he can possibly take; how much more we can watch him suffer and feel helpless. I'm not going to begin to tell you how I'm/we are feeling, that would feel incredibly selfish at this point. Please say a prayer...or ten, or fifty.
 
 
Friday, May 24th, 2013
Today is two weeks since we saw the surgeon (for Hayden) & heard all this gloom & doom, urgency about the spleen rupturing, & three surgeries; yet there is nothing scheduled. The office people keep pushing it of on each other & no one wants to take responsibility. So, two weeks time, 7 phone calls on our part (two of which were to an office supervisor), &
we're beyond frustrated! Don't know what else we could possibly do, as we've already been praying for this situation! If something happens to my son due to their inefficiency, believe me you've never seen a Momma bear like they'll see!
 
Friday, May 17th, 2013
I have a HUGE favor to ask of you...Wondering if anyone would be willing to fast for Hayden over the next couple of weeks (starting this Sunday), you don't have to tell me how, when, what, how often, that's between you and God; a "like" will tell me that you're willing to help. I have found God to be amazingly faithful and have seen true miracles come through prayer and fasting. I would be ever hu...mbled if you'd join me in making this commitment for Hayden and all the health/medical/surgical issues that he's been going through and has coming up in the immediate future. God Bless!

"Then came the disciples to Jesus apart and said, Why could not we cast him out? And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove: and nothing shall be impossible unto you. Howbeit THIS KIND GOETH NOT OUT BUT BY PRAYER AND FASTING." Matthew 17:19-21
 
Tuesday, May 14th, 2013
Hayden got his injections today, I have very mixed emotions about all of this.We don't have the specific date yet, but the injections need 2 weeks to be the most effective & he has to be admitted for the first procedure on a Monday...so, Memorial Day (May 27th) or the next Monday June 3Rd. Dreading all of this (the risks, the pain he will be in, the stress), but also ready to get it going so Hayden can better already.
 
Friday, May 10th, 2013
Extremely bad news at the surgeon appointment for Hayden today, it's the worst news we've had in a very long time; I'm no longer excited for Hayden to have surgery. Seems his spleen must also be removed. Long, complicated story in short version, 3 different surgeries in 3 days, very high risk, & he's expected to stay in the hospital for several weeks...wasn't prepared (or expecting) to hear all of... this today! There is immediate danger of his spleen rupturing & Hayden bleeding to death before we could even get him to the hospital. He will start immunity injections next week (to try to build up his immune system) & surgeries will start two weeks after the injections. Please pray for him like you've never prayed for him before! Beyond devastated...
 
Wednesday, May 1st, 2013
Tonight Hayden attended his first church service since August, we had an awesome night! Thank you Park Crest Baptist Church! Praying we get to go back on Sunday!
 
Tuesday, April 23rd, 2013
So, the last few days have been rough. Laurie and Paxton have both been sick. I can't remember the last time I've seen Laurie this bad. Hayden has also been having his moments. I thought for sure we were headed to the ER today, but as usual, he took a turn for the better, a temp of 103.1 and heart rate of 130-150 to normal in a couple of hours. Oh well, I'll take what I can get these days. Prayers are definitely appreciated. As long as I can stay well, we should be ok, and I use the term "well" loosely.
 
 
Sunday, April 21st, 2013
Trying to stay out of the ER, thanks for all prayers! — with John Stanley.
Your prayers seem to be working, Hayden has had a better evening & is still at home. Thank you so much for lifting him up! Please keep praying that he continues to improve.
 
 
Tuesday, April 9th, 2013
Had to take Hayden to Mercy hospital to meet with a physical therapist and the wheelchair salesman from the DME company, for a wheelchair clinic/assessment; it's a new requirement for Medicare when ordering a new wheelchair. Hayden did great, he had to lay on a therapy mat, get into a natural sitting position (with Daddy holding him up from behind), he didn't get mad or upset at all! They got all the necessary measurements, everyone agreed on all the specifics of what Hayden needs & it was an awesome appointment (2hours worth)! We're one step closer to a new wheelchair! Makes me SOOOOO happy! We love and appreciate Mercy hospital & their staff, excellent people!
 
Wednesday, March 26th, 2013-Dr. Appointment
Hayden didn't end up getting botox today, his rehab dr. decided she wanted to check his platelet levels before she stuck a bunch of needles in him; we're perfectly fine with that decision. Fully believe that everything happens for a reason & that God is in control, it just wasn't meant to be today & I don't need to know why. Just happy that all Hayden's Dr's are being careful & attentive, we couldn't ask for more. We went to the lab & had blood work drawn after his appointment, I'm very anxious to hear the results; praying they have raised considerably by now! If the levels are good, we'll reschedule botox for next week.
 
Tuesday, March 25th, 2013-Handsome Boy
Look how handsome! Haircut, bath, & shave...ready to show off tomorrow for Dr. Bell (rehab Dr). Due to all his sickness & infection, she hasn't seen Hayden since August (8 months).
 
Monday, March 24th, 2013-Sharing our boy as we prepare for the 6 year anniversary
I SO miss this handsome, silly young man...praying for the day I get to see those beautiful blue eyes open & shining, and that big grin on his face...the gravity of my loss & sadness never goes away, but I find solice/peace/hope/ joy and blessings by standing on the promises of Christ my Savior...that's where you'll find me...
 
 Saturday, March 23rd-Message from Chrissie Woodruff, Hayden's Godmother
Just thinking about Hayden right now. Easter marks the 6 year anniversary of his accident. This is always a tough time of year for his family but those of you who have reached out with prayers, cards, financially, and other ways have made a big difference this year. Thank you all so much for loving Hayden and his family! It's not too late to be part of the wheelchair fundraiser and to let Hayden and his family know they are not forgotten.
 
Saturday, March 16th-Hayden gets out of the house & goes to the zoo!
Guess who is out of the house today...HAYDEN! First time he's out for fun in about 8 months. Praising Him above for the blessing of wellness & family day! We took him to the zoo & he had an awesome day! Praise Jesus!
 
 Tuesday, February 26th, 2013-Checking In
Wanted to let you know Hayden had a really good night. An added bonus to the VNS device being turned up is that as it sends it's electrical signals it tickles Hayden's throat & makes him cough. I know after a while it was probably uncomfortable to him, as he coughed like crazy all evening! The good news is that for his lungs, all this coughing was excellent! Hopefully Hayden cleared out all the junkiness in his lungs and will remain infection free! I love that God is in even the smallest of details, He never leaves Hayden & He comforts us like you wouldn't believe.
 
I've been wondering how many people actually follow or read these website posts, well, besides me (lol). Then it occurred to me that it may be my fault (if no one is following this website), since I'm forever behind and saying that I haven't had the emotional or mental energy to update. I want you to know that I'm going to make a much more conserted effort to keep this page updated and current. When I'm not up to date, then I'm not letting everyone know how Hayden is doing, and I'm not updating specific prayer requests; so it's important for me to do this differently. Thank you for your dedication to Hayden, and to our family. We cherish you all!
 
Monday, February 25th, 2013-Neurologist Appointment
Neurologist appointment today for Hayden...very curious to see what he has to say...last few times we've seen him he's let us know there's not much more he can do for Hayden...hmmmmmm.
 
Appointment went good, they turned the VNS up to try to help with the increase of grand mal seizures. Bad news is that Hayden's vns only had a 25% battery life left, which means it will have to be replaced soon; doctor feels he may have 6 to 8 months left. It was supposed to last 4 1/2 to 5 years battery life, but because his is turned up so high & because we have to use it so much it has drastically been drained in only one year. He is fully aware of Hayden's other medical issues/need for gall bladder surgery/platelet problems, so we will wait/coordinate & whatever is needed to help Hayden be well. We will go back in May to check battery life & make further decisions. Good news is that this is a minimally invasive surgery to replace the device, just under the skin. Thank you, everyone for your love, support, & prayers, I am forever grateful, God Bless!
 
Sunday, February 24th, 2013-A message from Chrissie Woodruff, Hayden's Godmother
 

Dear friends,

As I think about the last 6 years my heart is full and broken all at once. I will never forget the moment I got the call about Hayden’s accident. My sweet, caring, compassionate 14-year-old godson was run over by a car and lay in a coma. I will never forget speaking to Laurie every single day while Hayden was at the hospital in St. Louis and I was in Sydney, Australia. Over these 6 years, there have been so many times I’ve prayed and questioned and wondered what God would have me do. I do not live near Hayden but am so blessed to get to talk to Laurie frequently. I share in the triumphs and the heartbreaks just as many of you do.

 
This year as we approach the 6 year anniversary of Tragic 3-31 and Hayden’s 21st birthday on August 12, I give God praise that Hayden is alive and is reaching people for His kingdom! I give God glory that, in the Name of Jesus, Hayden WILL wake up! I give God glory that Hayden continues to grow into the strong man that God has called him to be!
 
As Hayden has grown, he has literally outgrown his wheelchair! Clearly, he is in desperate need of a new one.
 
 
Thanks to a generous friend, the down payment has been made on a new wheelchair. The total cost of the chair is over $7,000. The Stanleys have applied for a grant and are working to get any federal funds allowed for this but the cost will not be covered. Would you consider giving a tax-deductible donation to the “Hayden Stanley Special Needs Trust” to help purchase a new chair for him? I would love to get this money raised quickly so he can be fitted for his new chair, get it ordered and built so he has it by his 21st birthday. This chair will enable him to get out of his bed and participate in family outings like church, movies and events for his siblings.
 
Through the last 6 years John and Laurie have cared for Hayden at home. They, Denton and Paxton have sacrificed much to keep their family in tact. I thank God that He bound them together as a family prior to the accident so that this family could not be torn apart in the midst of tragedy. Please contact me at chrissiewoodruff@hotmail.com if you have any questions. Thank you for your prayers and support for Hayden and his family.
 
Monday, February 18th, 2013
Dearest friends & prayer warriors,
I must confess that life has overwhelmed us these past 6 to 8 months; John and I find ourselves in a depressed state too often, and finding it hard to keep enough momentum going to keep moving forward. Poor Hayden has really been through the ringer, and he's not out of the woods yet. My posts since he was so sick in Ausgust, have just been copies of my posts on facebook; I just haven't had the emotional (or physical) energy to document all that Hayden (and we) have been going through. It's very hard for us to watch Hayden suffer so much, to such an extent that we begin to question what God's plan could possibly be for all of us. Don't get me wrong, we fully and firmly believe that God is in control! We placed Hayden in God's arms a very long time ago and we submit completely to His will; it's just been a nightmare to live & to witness Hayden's suffering. It's been a long, hard battle! I know Satan would like us to give up, but we remain steadfast in our faith in our Saviour, Jesus Christ!
 
The pic line has been out for two, almost three weeks now and Hayden seems to be doing good; praying that he is still infection free! Seizures continue to plague him most every day, and are becoming more and more difficult to stop without completely doping him up. When he's doped up from the meds to stop the seizures, he stops breathing (almost like holding his breath) from time to time and we have to shake him or rub his chest to get him breathing again. It becomes overwhelming and scary at times to witness. I don't mean for this post to be doom & gloom, just trying to relay where we've been and what we've been dealing with.
 
We, as a family, could really use your prayers right now; Hayden definitely needs as much prayer as you can give. Please lift his name to our Heavenly Father repeatedly, bombard heaven with Hayden's name! We are thankful for each and every prayer warrior out there! God Bless!
 
Wednesday, February 13th, 2013
While headed to Hayden's hematology appointment, he started having a grand mal seizure in the back of the van; you've never seen so much circus clown activity as John & I trying to get the side door open to get in the back to help him! It's funny NOW!  Hayden has epilepsy caused by the brain injury. He has break through (or smaller seizures) all the time, regardless of where he's at. However, he rarely has grand mal seizures (no more than once a month). Everytime he's had a grand mal seizure, he's been at home; so, yes, first time he's ever had a grand mal seizure in the van. Scary!
 
The hematology specialist actually turned out to be an Oncologist, she actually put into words that which no one else has wanted to say; they felt that Hayden was experiencing bone marrow failure (which is/would be fatal). The good news is that after speaking with us and looking over Hayden's medical history, she changed her mind (God had His hands directly on this one). She admitted that she had come into the room expecting to order a bone marrow biopsy for Hayden, but realizing that his platelet counts have been moving up and down (instead of only going down), Hayden gets a reprieve! The oncologist thinks that Hayden's platelet counts and the enlarged spleen are due to the repeated infection issues, and his abdominal issues (pancreatitus); she feels that if we can keep Hayden infection free for the next several weeks, that the platelet counts should come up and spleen go back to normal. Your prayers over these issues is crucial to Hayden's recovery! Hayden will repeat blood work for platelets in 6 weeks, repeat the spleen ultrasound at 7 weeks, and see the oncologist again in 8 weeks. The gall bladder surgery will still be on hold until Hayden's platelet issue is resolved (they must stay over 100,000) and until he remains infection free. Thank you for your continued support, and for praying our sweet boy into good health! Proclaiming it right now, in Jesus Precious name, Hayden WILL ENJOY GOOD HEALTH!
 
Wednesday, January 30th, 2013
Of course, the day we have to get Hayden out for an appointment, it's absolutely freezing! Just couldn't be warm & gorgeous out like yesterday...lol. YelNatS' popsicles!
 
Pic line is out, no more Iv antibiotics! Praising our Heavenly Father! Yippee! Getting out in the cold was SO worth it!"
 
Friday, January 25th, 2013
We could use some mass prayers right now...Hayden is still on IV antibiotics (today should have been the last day, but they were extended through Wed due to a rise in white blood cell counts) and has spiked a fever of 102.3 this morning...it has come up from 101.9, even after motrin. I'm almost positive this is going to take us back to the ER.
 
We just finished blood draws & are now waiting to see his primary care Dr @ Smith Glynn. Praying we go HOME from here!
 
You all did a great job of praying Hayden home today! No ones quite sure yet why he's running a fever, all of his lab work is good; his white blood cell count I'd even better than on Tuesday. The Dr is running blood cultures & since he's still on Iv antibiotics we're just keeping a close eye on him. If the temp gets above 101 again, we have to take him in. Thanks for all the prayers!
 
Monday, January 21st, 2013
If we can ever get Hayden well enough, we really need new family pictures; we didn't get to have any taken last year & that makes me sad. The year before Hayden's accident we didn't get to do family pictures either (due to scheduling/busy lives) & I have longed for that one last, whole, happy family picture ever since...because we never know what tomorrow will bring, documenting each blessed moment & year with Hayden is so important to my heart.
 
Saturday, January 19th, 2013
HAYDEN is doing good. Started running low grade fever yesterday, but we've been able to keep it under control. Have been doing IV antibiotics 2x a day & he's handling them well. Sweet baby boy has been through so much!  :-(
"
HAYDEN is doing good. Started running low grade fever yesterday, but we've been able to keep it under control. Have been doing IV antibiotics 2x a day & he's handling them well. Sweet baby boy has been through so much! :-(
 
Tuesday, January 15th, 2013
Finally taking our boy home, praise God! Going home with one iv antibiotic & one oral, home health nursing will be coming to the house for labs, etc. Was given both flu & pneumonia shots before leaving, praying that doesn't make him worse. Platelets are still low & still having pancreatitis issues...but getting better. Doctors were afraid to keep him in the hospital any longer than necessary due to exposure risks. Thank you, thank you for all prayers!
 
Monday, January 14th, 2013
As devastated as I was Friday & felt the wind being kicked out of me, God has shown Himself to be standing firmly in front of us. It's become apparent that this is where we're supposed to be. I don't believe in coincidences, I believe everything that happens is God ordained in some way. I am completely humbled that God put us here, in this hospital, in this timing, to use us to minister to Hayden's care takers; today has just been jaw dropping, awesome! Wow! I'm still amazed that He would chose me to be His vessel at all. Praising Him & His mysterious ways!
 
Sunday, January 13th, 2013
Hayden seems to be progressing, but he's still running a low fever. We got confirmation yesterday that he does have a bacterial infection in his lungs, other than that we don't know much. Cat scan today should give a lot more answers. If cat scan is favorable, the discussion moving forward is placing a pic line for Hayden to go home on Iv antibiotics (for at least two weeks). Your continued prayers are much appreciated!
 
Friday, January 11, 2013
Deep breath...Hayden is being directly admitted to the hospital, just waiting to hear if he's going to ICU or not; his doctor wants icu, John & I don't feel its necessary (at least not yet). I'm so bummed...trying to find the "gumption" to keep moving, when all I want to do is scream, cry, & have a nervous breakdown. So glad God never leaves my side & never leaves me comfortless!
 
For all those praying, here's what's going on: Even though all of Hayden's blood tests & xray were clear on MONDAY (yes, just 4 days ago), he started breathing funny, not keeping his O2 level up consistently, & increased heart rates yesterday. This morning he sounds like a coffee pot & was running a fever. Upon repeating xray & blood work today, he again has pneumonia & his blood work is crazy; they think he has sepsis again (bacterial infection in the blood stream). For now he gets to stay out of icu, just depends on what each day brings. He's being admitted to the 4th floor. All prayers are much appreciated!
 
Hayden is settled & resting. He's on oxygen, still running a fever, & has three IV antibiotics running, but he seems calm. Praying for quick recovery. You won't hear us admit it very often, but we're exhausted, overwhelmed, hanging on by a thread & just don't know how to keep doing this. One day at a time, even with God's help is becoming harder & harder...Lord help us. Hoping those doughnuts lift our spirits."
 
Friday, January 11th, 2013
Well, Hayden isn't any better today, he's actually worse; heart rates staying in high 140's to 150's. We called the Dr & we had to fight against taking Hayden to the ER; heading to do repeat xrays & labs, then seeing Dr St 12:45. I should have also mentioned that grid breathing is like panting & he's running a fever today.
 
Thursday, January 10th, 2013
Hayden's back to having very high, unexplained heart rates for two days now & he had a massive grand mal seizure this morning. We've given him every medication we have to help lower his heart rate & make him comfortable. Praying he's better tomorrow & that we can keep him OUT of the hospital this time."
 
Tuesday, January 8th,2013
Update on Hayden: During his appointment yesterday, we discussed so many things. The most important are these; His chest xrays were clear (except for continued atelectasis), white blood cell count is down (along with an whole list of other blood tests, all normal), so all infection seems to be gone. The bad news is that his platelets have DROPPED by 1,000 and his spleen is still enlarged (this spl...een enlargement is a new predicament as of his hospitialization in Dec. it wasn't seen in scans from Aug/Sept). They now feel that Hayden has some type of Auto Immune Disorder going on; that his body is producing platelets but something within his system is destroying them on a very rapid basis. We are waiting on an appointment with a Hematology specialist to try to pinpoint what the problem is & if/how we can fix it. The Gallbladder surgery will remain on hold until Hayden's platelet issue is resolved. As always, thank you so very much for your commitment to Hayden & us, and thank you for your continued prayers. God BLess!
 
Monday, January 7th, 2013
Crazy long appointment for Hayden this morning. We've been with the doctor since 11 & getting blood tests note; then heading to get xrays taken. Glad were being thorough.
 
Thurdsay, January 3rd, 2013
Hayden's platelet number has not improved since leaving the hospital, as disappointed as I am, I refuse to let Satan declare this a victory; I trust my Savior above all. Hayden will see his doctor on Monday, and he's planning on referring Hayden to a hematology specialist to try to figure out what's causing the low platelets. I love you all, your dedication to praying for Hayden & thank you in adv...ance for your continued prayers. On a good note, Hayden and I had a really good day today. John had to travel to Columbia to the VA hospital & was gone all day; just Hayden & I on our own. I'm so thankful that it was a peaceful/easy day while John was gone. Hayden can make me anxious about being left alone with him due to all his seizure problems. I think the Lord knew I needed a break on the stress level today. God Bless! Oh, I forgot, the number is 52,000..."
 
Thursday, January 3rd, 2013
"Lord, I wait on You because You are my Lord and I trust that You know the very best time to fulfill Your promises to me. I depend on You at all times, but especially when I feel weak in the face of unanswered prayers and postponed dreams. Give me the faith and patience I need to rest in Your timing. You are my strength, and I ask that You would enable me to be strong and whole in my mind, body, and soul as I wait on You to move on my behalf. I will lift up praise to You whenever I feel weak, rejoicing that I have found my strength in You. Amen..."
 
Wednesday, January 2nd, 2013
"Hayden's been having a Grand Mal seizure & multiple small seizures this morning...if you have a few minutes, please lift him up."
 
Thursday, December 27th, 2012

 

That's what I'm talkin bout, Jack!

 
 
 
"Sweet, sweet baby boy! Praising God that Hayden is still our miracle, that he's still fighting to LIVE! I'm so thankful for his beautiful spirit everyday, but on this Christmas day more than ever before! I don't always show it to everyone, but in the secret, quiet recesses of this momma's heart, I am always sad & grieving for my beautiful boy lost to such a horrific event; it's an awesome day when my joy is big enough to quiet the grieving in my heart! Thank you to all for your prayers, & for once again praying this precious soul home to his family! I know Hayden's just as grateful! We had a truly BLESSED Christmas! God Bless & love you all!"
 
Tuesday, December 25th, 2012
Merry Christmas from the Stanley's! We just got the 2ND best Christmas present ever...because Jesus is the 1St...Hayden gets to go home today! We had to agree to some home health nursing, going home on antibiotics, & scheduling surgery once platelets are over 100,000; hey, there's no telling what we might have agreed to today (lololol)!"
 
Monday, December 24th, 2012
Surgery for Hayden sometime this morning. Platelets have raised some, in the low 40,000's now.
 
Change of plans; apparently the surgeon wasn't aware of the platelet issue & once made aware, he doesn't feel safe doing the surgery until platelets are higher. THANK YOU, LORD! This was my biggest concern & source of unrest.
 
I just can't believe its Christmas Eve & we're sitting in the hospital. No wrapping, baking, or getting ready for all the festivities of Christmas day...I'm a bit jealous of all your posts (lol, seriously). However, this is such a reminder of how blessed we are to be a whole/intact family...& as long as we're all together, we can celebrate Christmas anywhere, even without all the fun traditions we're used too. After all, Jesus was born in a manger...without lights, ribbons & bows. Hug your loved ones tight, you just never know what tomorrow will bring..."
 
Sunday, December 23rd, 2012
They actually did Hayden's ultrasound about 10pm last night...its official...Gallstones; which untreated can cause pancreatitis. Waiting to hear from Dr as to the plan moving forward.
Now if only the discussed ultrasound had happened last time he was here (August & September), this could have already been taken care of & we wouldn't be in the hospital at Christmas time. Ahhhh, hindsight, how you tease us!
Want to know what's worse? We just heard two bombshells:
1. Hayden did actually have an ultrasound last time & they knew he had gallstones" no one ever told us.
2. They also just told us because the stones are still there he has to have surgery.
3. This ones the kicker; they just told us that his platelets have dropped critically low again. He's at 37,000, at 20,000 is when patients start bleeding out; not even sure Hayden can have surgery...safely.
ASKING you to PRAY, PRAY, PRAY!
 
Saturday, December 22nd, 2012
Hayden had a good night & is chillin today. He's had his bath & Daddy gave him a good shave...he's so handsome! Think he'll be having an ultrasound of his belly tomorrow (gallbladder, etc) trying to find out why he keeps getting pancreatitis & probably repeat xrays to check pneumonia. 24 hours now without food/nutrition & nothing in his belly; poor baby!
 
Friday, December 21st, 2012
The very LAST thing I wanted to do this month, this week, TODAY was to take Hayden back to the hospital/ER...yet, we're on or way....totally bummed! Praying we bring him back home, TODAY!
Not the best news; Hayden is being admitted to St. Johns with pneumonia in his lower lobes & pancreatitis (Again). Lord, help us!
Its been a long disappointing day, but Hayden is where he needs to be. They've taken excellent care of him today & he's resting ok. He is on 5 different antibiotics & is on a low volume of oxygen. Thank you all for the continued prayers!
Friday, November 30th, 2012
I SO miss this handsome, silly young man...praying for the day I get to see those beautiful blue eyes open & shining, and that big grin on his face...the gravity of my loss & sadness never goes away, but I find solice/peace/hope/ joy and blessings by standing on the promises of Christ my Savior...that's where you'll find me...
 
Wednesday, November 14th, 2012

Today will be Hayden's first time out of the house in almost a month, we have his 1st appointment with the Dr. who is supposed to become his new primary; we've been trying/fighting/waiting for a new Dr. since September. Im not going to ask you to wish us luck, instead I'm asking you to send us Jesus (along with his peace,patience,blessings,grace). Thanks in advance! God Bless!

 
Monday, November 5th, 2012

Today begins Hayden's 11th week (74 days so far) on antibiotics...so wish he was off the antibiotics & rid of all infection. This is time that we can't leave the house together & do things as a whole family, time that Hayden is still uncomfortable (due to the infections & side effects from the antibiotics) & susceptable to every germ/bacteria/infection out there. Honestly, because the last conversation with the infectious disease Dr. ended with the suggestion of Hayden going back into the hospital for IV antibiotics, we have put off calling him back. Hayden started his last round of antibiotics on Sat, this is our last chance before we will be forced to call the Dr. office. Would you please pray with us, for God to heal Hayden & rid his body of ALL infection? *On a good note, his seizures have slowed some after my last post & his appointment with his Neurologist (they turned up the frequency of his VNS device). Praising our Merciful God in Heaven & trusting that He will continue to answer our prayers!

 
Tuesday, October 2nd, 2012
Quoting a friend from high school who wrote this to me, her words are the most beautiful I think I've ever heard & they have touched my heart deeply. Lina Robertson Jones, thank you for sending me a message that is God inspired & for KNOWING what a precious gift Hayden is to us! ♥

"When I was pregnant with my son, I asked my Grandma (a Mother of 14 children), "What if my child isn't healthy?" She... said, "That is the greatest blessing you could receive from God. Those children are the Angels here on Earth. You can always tell the true nature of a person by the way they treat God's special children. Those with evil in their hearts cannot look them in the eye because it's like looking into the eyes of God. God doesn't give these children to just anyone. If you are so lucky to have such a child, it is because God has deemed you worthy of caring for one of his Angels. There is no higher honor than that on Earth." I read your posts, and I always think, "Wow, Laurie is one of God's chosen ones." You are very, very blessed"
 
Monday, October 1st, 2012
**URGENT...CALLING ALL THOSE WHO WANT TO HELP HAYDEN
Once Hayden turned 20 in August, his medical coverage switched from Medicaid to Medicare, we didn't really understand what this meant until he was released from the hospital. Since then, we have been fighting to get a new doctor for Hayden as he can no longer see his pediatrician (because the pediatrician can't file with medicare), and fighting ...
(daily) to get medications filled/refilled/approved/ prior authorizations/etc. These are mostly medications that Hayden has been on for years, meds that are VITAL to his survival, & a few are new meds; such as antibiotics, breathing treatments, muscle spasm/relaxing meds. Medicare has refused many of these medications, leaving us to pay out of pocket for them (most are extremely expensive). These costs are more than we can continually afford, but also important meds that Hayden can't afford to go without. There is also now copays on every medication that Medicare does approve.

We haven't done a fundraiser since Hayden's 16th Birthday party and are finding ourselves at a point where it's become critical & immediately necessary. Hayden's medications & treatment schedules run from 7am to 12am every day and exhaustion has become our lifestyle; for this reason we were hoping others might be willing to step up and help out, maybe even form a fundraising comittee for multiple events. So many are always asking how they can help & what they can do to help, I just can't remember who everyone is that has wanted to help us. If you are willing to help fundraise, have fundraising ideas, have some time to volunteer, or would like to head such a comittee, please let me know ASAP! Feel free to comment here, private message me, call or text me! Thank you in advance for your love & support!
 
Friday, September 28th, 2012
I want to tell you something on my heart; nothing happens that isn't God ordained/or filtered through God's hands...God definitely put me at the JR women's conference this weekend, knowing EXACTLY what my heart needed to hear. Trusting that HE who promised IS FAITHFUL! Keeping my heart fixed on the miracle that HE CAN & WILL help my HAYDEN, our lives, my other children, my marriage, our finances, my family through this nightmare we've been living. If you thought I was crazy for my beliefs/faith regarding Hayden & my life before...WATCH OUT PEOPLE, cuz I'm gonna claim love & miracles through the rooftop! SHAZAM!
 
Monday, September 24th, 2012
Hayden started running a fever yesterday, today it's up to 101.9 & he finished his last dose of antibiotics last night. We have a call in to the doctor (who we have an appt with tomorrow), to see what he thinks. Please lift up a few extra prayers for Hayden today. ?
 
ok, well good news & bad news. Good news is that for now, Hayden's back on two antibiotics for 14 days (one is a new antibiotic, he only had one iv dose of it the night he went into ER & this one he will take for only for 7 days). Bad news is that if he's still having problems after these next 14 days, he'll have to go back into the hospital (BOOOOOO!!!). Trusting our Saviour & not even going to contemplate the "what if's," the devil does not get to get in my head/heart today!Thank you EVERYONE for your prayers! ?
 
"Heavenly Father, watch with us over your child Hayden, and grant that he may be restored to that perfect health which it is yours alone to give; through Jesus Christ our Lord. Amen."
 
Sunday, September 9th, 2012
Dearest Prayer Warriors, you do such an amazing job for our family & Hayden! God heard your pleas on Hayden's behalf & pulled him from the edge of death, God get's the glory, but YOU all prayed him home; my heart is ever humble! Thank you!
 
Saturday, September 8th, 2012 PEACE
Saturday morning, with Hayden snuggled in his bed, football on the TV...ALL IS RIGHT in my world again!
Today I don't care about my dirty house, or over due bills, EVERYTHING I care about today, Jesus has kept whole; my family! Blessed...Praise HIM!
 
 
Friday, September 7th, 2012--HOMEWARD BOUND
Hallelujah, Hallelujah...Dr just came in & said since Hayden's no longer critical & because he thinks we take such good care of him, he's comfortable letting us take care of him at home. The infectious disease Dr will follow Hayden at home/through the office & he'll stay on antibiotics another 14 days...but GOING HOME! Thank You, Lord Jesus!
 
Maybe we just thought we were headed home today...stuck in the hallway with all the other patients on this unit, due to the severe storm/wind/warnings/sirens. Oh, Lord! Lol
 
Thursday, September 6th, 2012
DAY 14: We were hoping to go home by Friday, but Hayden is back to running a fever & his white blood cell count is high again...geessh! He's also still having issues with feeding/digesting. Prayer warriors, please keep speaking to God on Hayden's behalf; we so desperately want him well & back at home. Thank you for your commitment to Hayden & our family! God Bless
 
Tuesday, September 4th, 2012
 
Monday, September 3rd, 2012
 
Sunday, September 2nd, 2012--Hayden DID IT!!
Off the vent--Hallelujah!!! 
 
Sunday, Septemeber 2nd, 2012
URGENT PRAYERS NEEDED:

We're on day 10 in ICU & we're getting closer to the tracheostomy conversation. The doctor is wanting to use today as a determining factor as to what happens in regards to the trach/vent. Tracheostomy is the LAST thing we want, we need your help in this prayer request. Hayden MUST breathe on his own without getting into distress. Please pray for slow, DEEP breaths for Hayden.
 
Later this afternoon:Well, here we go...doctor has decided to remove ventilator & see how Hayden does/what he can do when forced (they're getting everything ready NOW). Lord, Jesus, THIS is the time! Lay Your healing hands on Haydens lungs/breathing drive.
 
Saturday, September 1st, 2012
 
Friday, August 31st, 2012-End of the day
John & I pray together with Hayden every night before I leave the hospital; tonight we prayed for a much calmer day tomorrow, less (or no) seizures, & God giving Hayden Divine power in his lungs/breathing drive, no fever, no infection (getting off the vent/power in the lungs being the biggest prayer request). We are believing in HIM for strength & answered prayers; we are also (in the name of JESU...
S) CLAIMING a better day tomorrow, in every prayer mentioned. Would you please stand in that prayer & proclamation with us?

Thank You, Lord, that there is power in Your name. We call upon Your name today and ask that You would protect Hayden. Jesus, we run to You as our strong tower, our refuge in times of trouble. We speak the name of Jesus over Hayden's situation now & pray that You will give us the desires of our hearts concerning Hayden's health/life. Thank You, Lord, that when we cry out to You, You hear our prayers and will answer. Amen Proverbs 18:10 & Matthew 15:25
 
Friday, August 31st, 2012
”You are the God who performs miracles ; You display Your power among the peoples. (psalm 77:14) LET'S PRAY BIG & BELIEVE GOD BIG TIME TODAY.”~~Christine Caine

We found out this morning that even Hayden's Intensivest expected to lose Hayden on Saturday...not sure that I have the words to explain how this makes me feel. We were thinking it, no one spoke it, I think we even felt that the doctor was...
thinking it; to have that fact confirmed just completely hits me in the heart & leaves me on my knees thanking a God that not only hears our prayers but also answers, a God who personally walked us through such a terrible weekend, who laid his hand upon me as I had to tell Hayden's siblings the full truth about how close to death their brother was, & a God that remains ever vigilant in our lives. So very blessed in this moment!
 
It's been one of ”THOSE,” days; not traumatic but non stop & disappointing. Hayden is still struggling greatly to get of the vent, & running a fever again, so they're back to searching for infection. Was really thinking we would be out of icu within a couple days...guess that's not happening. We're a bit disheartened but resilient & our God can do ANYTHING, so we're placing or hopes there! Thank you for always bring ready to pray for our boy.
 
 
 
Thursday, August 30th, 2012
Big Important Prayer Request: Hayden must start breathing on his own!

In todays vent trial, Hayden wouldn't breathe on his own at all, we're hoping that its due to an adavan dose he'd had for seizures a few hours before the trial; they gave him a much larger dose than we do at home. The doctor is, ”very concerned with Hayden's breathing drive.”

Prayer warriors we look to you for your help & agreement that Hayden CAN & WILL breathe on his own if not doped up (lol). Thanking you in advance for prayer & thanking God in advance for hearing/answering our prayers.

Thank YOU Lord Jesus for all that you have carried Hayden through so far!
 
You prayer warriors are doing an amazing job! Want to know the ” fruits of your labors?”
1. Hayden's platelets are up to 70,000.
2. His chest xray is almost clear.
3. His pancreas & enzyme levels are almost back to normal.
4. His ventilator is turned down today & he is struggling, but he's doing it!

God had heard our/your pleas & has been answering & what a miracle the answers are! Please, please, keep lifting him up; lets get this boy off the ventilator, infection free, platelet normal & HOME! Seizures have become an issue since yesterday, so please lift that one up too!
 
Wenesday, August 29th, 2012
Hayden seems to be turning a corner, and for that we're so thankful. His platelets are up again today to 50,000; truly a miracle we were praying for! His kidneys also started working better yesterday. He is still in ICU & on a ventilator, for him to get out of ICU he has to be off the vent. They have been doing vent trials for the past two days, trying to get him to take breaths by himself. Monday...
, he failed twice, yesterday he took breaths on his own but they were quick/short breaths & he was working much too hard. It is crucial that he start breathing on his own. He also started having seizures again last night.

Specific Prayers:
1. That Hayden can begin breathing on his own & sustain the breathing without getting in distress. This is critical, otherwise we will be looking at having to make the decision of trachea; we absolutely DO NOT want this for Hayden.

2. That his platelet counts continue to rise.

3. No seizures! Due to the platelet levels & the effect Depekene can have, they stopped his depekene cold turkey (no weaning period) on Sun. He did start a new med & we're praying it can control his seizures.

4. That this infection will continue to subside; quickly!

Your prayers and your friendship have been a great comfort to us. All that have provided meals, all that are praying & posting for Hayden, and all that love our boy, we cherish you & every word you breathe to our Heavenly Father on Hayden's behalf; we truly could not do this without your support.
 
Tuesday, August 28th, 2012--Our God is Merciful!
PLATELETS are UP!!! Thank you merciful God in heaven! They're up to 31,000!
 
Monday, August 27th, 2012-Looking for progress
 
Sunday, August 26th, 2012-Tonight as I went home
The good news here is that Hayden is responding to treatments & meds. He is on 3 different antibiotics, an antiviral med, & an antifungal med; so they have all the bases covered. Yesterday his oxygen support through the ventilator was 90%, ...tonight before I left it was down to 30%; that's God in plain sight! Hayden seems to be stabalizing, his nurse told us today that he, "was happy with Hayden'...
s numbers & he seems to be turning a corner." Amazing news! The biggest issues are the pneumonia & all of the infections & the platelet count. (A normal count should be between 150,000 & 450,000; Hayden's has dropped to 30,000, they were 40,000 yesterday (YIKES!). I don't personally know anyone stronger than this kid (no offense intended), anyone who has suffered more than he has over the past 5 1/2 years, & I am in AWE that he is still fighting so hard to be on this earth; GOD BLESS HIM! His ultimate glory would have been to go to heaven a long time ago, so as long as he (& God) wants to be here, we'll keep fighting right along side of him! Your prayers are crucial, with you fighting this fight with us, in unison raising him to our Heavenly Father, the prayers have always carried him through; so thank you for helping Hayden fight this fight!
 
Sunday, August 26th, 2012-Please pray for Hayden
Hayden is still in critical condition but by the Grace of God, he made it through yesterday & last night.  Hayden is hanging in there like a trooper! Better heart rate, better blood pressure, better body temp....praise Jesus!

Pray for severe pneumonia, septic shock, infection in bowels, pancreatitis, tumor/cyst on gall bladder & pancreas that are infected also, still intebated, still partially sedated, platelet count has dropped critically low so they have made the decision to stop depakene completely (which is for seizures), wisdom & Gods hands guiding all involved in caring for Hayden.
 
 
Saturday, August 25th, 2012-Hayden is in serious trouble
One of the lllooonnngggeeesssttt days I've had in a long time! Poor baby Hayden, he's really sick; I shouldn't even complain. HE won't forsake Hayden, not even for a moment. Hayden is in ICU, on a ventilator, and is critical right now. Last night's catscan of chest was clear, this morning his entire left side of his chest is full with pneumonia, he has no air space in his left lung. His white blood cell count is critically high, his platelet levels have dropped to a very dangerous level, and his body is in toxic shock.  Over night he just crashed so fast, he is really a sick boy! He was ventilated about 8:00am, has a femoral artery line, a central line, & has had a broncioscope (all before about 10:00 am, his blood pressure is extremely low, and he's on multiple antibiotics.
 
Friday, August 24th, 2012-Hayden is headed to Urgent Care
 
Monday, March 26th, 2012-This week marks 5 year anniversary
Once again, it's been a long time since I've updated on Hayden, I seem to have a hard time putting myself in the emotional place required for posting.  Hayden's VNS device surgery was on January 4th, he did really good, no infections and quick recovery.  The device was turned on two weeks later, it's cycle was to turn on every 5 minutes and run for 30 seconds.  Initally the device wasn't making any impact on the frequency of Hayden's seizures, he was having them every day and most of them large seizures well into February; needless to say it was a very stressful time.  Hayden would go back to the Neurologist every two weeks to have the device turned up in frequency levels, or current levels.  In February, because of the frequency & severity of his seizures, the doctor turned the cycle up to turn on every 3 minutes and run for 30 seconds; since then, we've seen some improvement.  Hayden is now mostly having smaller seizures and they are easier to stop, they can be every day but seem to average every two days.  Also, we are finally able to stop some seizures by manually swiping a magnet over the outside of Hayden's skin (over the device) to make it send an electrical current into his brain & disrupt the signals causing the seizure.  We weren't really seeing any progress with that until this March, and we are so grateful & elated to see these improvements.  Hayden has an appointment with his neurologist this week, so we are looking forward to his feedback on how he feels Hayden is doing.  Last time we say him, he felt encouraged that we were seeing progess too.
 
This weekend will mark the 5th anniversary since Hayden's accident, and while the date is bittersweet, we are so grateful to still have Hayden with us; loving on him, kissing on him, holding him are all precious things that we don't take for granted.  God is so good, so faithful, and our family is so blessed.  We know that Hayden has suffered, and still suffers greatly on a daily basis; as a parent it's very hard to ,but knowing he's covered, enveloped by God's love gives us so much hope.  Your continued prayers for Hayden are coveted and precious; thank you for loving our boy as much as you do.  Please continue to raise him up to our Heavenly Father, He has slowly been answering our prayers and we'll take that over no answer at all!  We have seen the great & marvelous things our God is capable of, and His power is above all!
 
Tuesday, December 27th, 2011--It's been a long time
As usual, it's been a long time singe I've made an update, for that I apologize.  Since July, life has found us recoving and moving forward.  Hayden has fully recovered, all infection is gone, and the wound vac came off the first week of Septemeber. By the grace and mercy of God, John "Hayden" Stanley turned 19 in August, we took him to Texas (his birth place and favorite state) to celebrate his birthday with family.  He did amazingly well on this long trip and seemed happy to be there.   Hayden's desire for life, his strength, and his endurance continue to amaze us, our comfort is knowing he rests in God's capable, loving hands.  With each passing year, each passing holiday, we seem to be healing and adding more of our family traditions back into our lives; a blessing within itself.  Christmas is a hard time of year for us, but Christmas 2011 has been our most joyous yet.  Each year that we're together, as a family, whole and complete, to celebrate our Saviors birth, our spirits are lifted. 
 
Hayden's biggest hurdle right now seems to be the seizure issues, he has frequent seizures due to the brain damage.  Hayden is on three preventative seizure meds and two emergency meds, all of these are at the max dosage.  Due to these circumstances, Hayden's doctor has recommended implanting a device that will send currents into Hayden's brain to disrupt the irregular signals that cause seizures, as they cannot increase his medication any more.  The device is called VNS therapy, a small piece will be inserted under the skin on the left side of his chest, and an electrode will attach it to the vagnus nerve in Hayden's neck.  It will only be implanted during this procedure, it won't be turned on until two weeks after the surgery.  Our anxiety lays in yet another surgery, anesthesia, putting him into someone else's care (which hasn't always been a positive experience in the past), and another surgically implanted device.  I'm sure you understand our hesitation after the baclofen pump fiasco Hayden endured in June.  With all of that said, Hayden had seizures the whole week of Thanksgiving, all day Christmas and the day after; so our hearts feel clear on this surgery being a reasonable step.  We are praying, and hoping that Hayden does great during this outpatient surgery, that God is at an ever constant vigil by Hayden's side throughout the procedure, and that this device can bring him much needed relief.  Hayden's surgery will be on January 4th, 2012, first thing in the morning.  As a precaution (because of past infection problems) Hayden will have one round of  IV antibiotics administered that morning, before the surgery.
 
Friends, your prayers have always been powerful and have brought Hayden back from certain death on more than one occasion.  I have so much faith in the strength of your prayers, and call on you once again to lift Hayden up to our Heavenly Father.  With such a force of prayer warriors behind us/Hayden, we have the confidence to have comfort in all that comes our way.  Thank you for your continued love and support.  I will make a post here and on facebook on January 4th to let you all know how Hayden's doing.  God Bless!
 
 
 
Saturday, July  16th, 2011--Catching Up
I haven't made a post in a while as we've been trying to get back to normal, but also I wasn't sure I had the words to share what needed to be shared. Hopefully many of you received emails regarding Hayden, specific prayer requests, etc in June while he was in the hospital; thought you might like an update and for those who didn't get the emails, I'll explain the best I can.  The baclofen pump that was inserted in Hayden's abdomen last June suddenly became infected and had a large staph absess around it.  Hayden was admitted into the hospital and put on iv antibiotics, unfortunately the pump had to be removed.  Doctors were worried about the infection getting into the cathedar that was attached to the pump and threaded into Hayden's spine; the worry was the infection would go to Hayden's brain.  He had surgery to remove the pump on June 14th, from this point it felt like chaos seemed to ensue; after surgery Hayden's body was hypothermic, his respirations were 8 per minute, his blood pressure was very low, and doctors started talking to us about our wishes regarding "dnr status."  From there, the iv antibiotics started affecting Hayden's kidneys and for several days they were afraid of complete renal failure.  During all of this, Hayden was being weened off of the intrathecial baclofen (into the spine) and onto oral baclofen, this process brought about crazy tremors throughout his body.  Also, due to the extent of infection and the wound in his abdomen the doctors left it open, Hayden had to endure dressing changes/wound packing twice a day.  The hypothermia eventually turned into a high fever for about a week, and Hayden also ended up with a bacterial infection in his colon due to 19 days of iv antibiotics. 
 
I'm going to be honest with you, I was scared...scared, anxious, and overwhelmed.  It took me too close to the emotions experienced when the accident happened.  Watching my child suffer to such an extent was beyond my capabilities as a person, mother, and Christian.  Even though I'd drop to my knees to pray, I wasn't sure what to pray for; his recovery or his release. My motherly heart was telling me he shouldn't have to suffer any more, that what he was enduring was more than one person should ever have to experience...yet I was too afraid to put my fears into words, afraid that they might come true.  During a long, emotionally draining conversation with a dear friend, I poured out my soul, my fears, and came to a very important decision; I had to pray for God's will.  This wasn't the first time I'd knelt before God, lifting my oldest son up to Him and deciding to do the most unselfish thing I could do...I prayed God's will over Hayden, knowing that it may mean losing him on this earth.  The good news is that God is so good, so faithful, and so merciful; He decided it wasn't Hayden's time to go.  After three weeks in the hospital, we were able to bring Hayden home.  His belly is still open, he has a wound vac over the wound itself and it seems to be healing consistantly. He has nursing coming in a few times per week, physical therapy (for now), and seems to be comfortable most of the time.  Due to the baclofen pump being taken out, his body is back to being tight and locked up as it was before the pump was inserted; over the next few weeks we'll be addressing with doctors what can be done about this. 
 
Your prayers, your love, your friendship, those who visited, those who brought meals, snacks and giftcards...were all crucial to our survival of this trial.  Thank you so much for your constant commitment to our family...to Hayden.  God has truly blessed us with such a large "family" of support!  PRAISING OUR FATHER IN HEAVEN...ALWAYS!!!
 
"Beloved, think it not strange concerning the fiery trial which is to try you, as though some stange thing happened unto you: But rejoice, inasmuch as ye are partakers of Christ's sufferings; that, when His glory be revealed, ye may be glad also with exceeding joy." 1 Peter 4:12-13
 
Tuesday, March 29th, 2011--This week will be the 4 year anniversary of Tragic 3-31 
This week will mark the 4 year anniversary of Hayden's accident, 4 years of struggle, 4 years of progress, and most of all 4 years of walking in faith through the worst tragedy our family has known.  Hayden has been really sick as of late, all respiratory stuff, been on antibiotics, and even spent 4-5 days back on oxygen.  He's been on antibiotics for a week now, and is off of the oxygen at this point, we are praying that he keeps getting better.  He hasn't been this sick for quite some time, and the fact that it's been now has made this milestone a bit harder to deal with this week.  You all are amazing prayer warriors for our family and for Hayden, I appeal to you to continue to lift us all up even more this week.  Our goal this year is to celebrate Hayden's life, his progress, and his future; none of which would be possible without our Heavenly Father.  We have planned a prayer vigil per say, but are focusing on doing it differently this year; more low key.  I've tried to invite everyone I could think of, but if I've missed you and you'd like to attend, please just send me a message so I can get you the info.  Pray that God continues to bring Hayden forward, to continue progressing, pray that Hayden's illness leaves him and that his seizures subside (he's been having increased seizure activity, mostly every day).  Please also lift up our family, our hearts, our despair, our lonliness, our financial struggles, and the struggle of being a family in the midst of all that's going on.  We need your friendship just as much as your prayers, we cherish every sweet word, meal, hug, smile, as much as your prayers; thank you for being ever faithful to our family.
 
Monday, January 3rd, 2011--It's a new year!
This time I am extremely far behind in an update, several have let me know that they want to know what's going on with Hayden; well, no better time than the first of the year!  I apologize in being so behind, I've been trying to work full time and keep up with our unusual family life.  Hayden has been doing amazing!  He started going to outpatient therapy twice a week at St. John's in October, we've been focusing on bending his knees and opening his hands.  Hayden has tolerated this aggressive therapy so well!  Sometimes he fights his therapist and lets her know he's not too happy with her, but we cheer his ability to resist and communicate his unhappiness; it doesn't mean she quits, but we definitely encourage Hayden to communicate in any way he can.  He has splints to wear on his knees and hands everyday to keep a prolonged stretch.  His incision from the pump surgery finally healed completely and we've had no more complications.   For all of our worries and fear regarding the pump, it has turned out to be a huge help to Hayden's body.  His muscles are so much more relaxed and easier to manipulate, I can only imagine how painful it's been for him to have his muscles locked up so tight.  The dosage on the pump has been turned up many times by now, and as the dosage increases so does Hayden's ability to move.  Hayden is also still getting botox every three months, his last session was right before Christmas.  This time we focused all of the botox in his hands and wrists, trying to give him every advantage available to open his hands.  The reason this is such a focus is so that he can move more, but mostly so he can begin to communicate with us in more ways.  I can't begin to say enough about how great Hayden has been doing the last several months and how proud of him we are!  Praising God for all of His help, mercy, guidance, and love; for without God in our lives we would be lost.  For the first time since Hayden's accident we traveled as a family to Texas for Thanksgiving, which has been a tradition for our family since Hayden was little.  We were afraid to travel 8 hours away with him, and were definitely scared of the "what if's" on the interstate.  We prayed and prayed, trusting that if we were supposed to go then God would give us the confidence and provide the means for the trip.  We were in Texas for the whole week of Thanksgiving and Hayden did amazing; not one seizure the whole time we were there!  He got to see family that haven't seen him since before the accident, and he got to be in his beloved state of Texas, with loved ones for Thanksgiving.  I'm not going to lie, it was a huge welcome break for our whole family!  God is so good to us!  Hayden's biggest struggles still revolve around his seizures and respiratory issues, please pray specifically that his seizures, and severity of the seizures, begin to subside.  Pray that God gives this young man relief from these seizures that control a big majority of Hayden's day, and his life right now.  Please lift this prayer request up to our Heavenly Father, ask Him to wrap His loving arms around Hayden and that He clear Hayden's lungs of extra fluid/mucus/infection.  Please also lift up our family as we continue to face great financial struggles, and family struggles.  Your prayers are so important and we truly believe God wants us to be honest and humble enough to ask for your prayers; and therefore we believe He is ready and willing to answer our prayers; we just need your help in lifting them up!
Looking forward to a new year, a great 2011--I think the devil is very much alive and has at times during 2010 tried very hard to tempt us to lose hope, lose faith, and give up; but he's underestimated our faith in our Lord Jesus Christ!  Nothing is impossible or too big for God, and nothing is out of His reach!  I remember a devastating time when Hayden was in the worst shape of his life, with a LESS THAN ONE PERCENT chance of living; YET, HERE WE ARE ALMOST FOUR YEARS LATER!  There were so many people lifting Hayden up in prayer and believing that God would save him, and we got our miracle!  I think it's time to increase what I like to call "The Hayden Prayer Movement," by getting as many believers as possible to lift him up in prayer.  Prayer warriors thank you for being faithful in keeping Hayden in your prayers, now we need your help even more.  Please, please, please share Hayden's story, pass this website to friends through facebook and myspace, email this link to your email contacts, approach people at your church about prayer lists, etc...whatever you have to do to get prayers lifted up for Hayden.  Prayer, faith, and standing united in the belief that GOD CAN RAISE HAYDEN UP are the keys to receiving our miracle.   STANDING FIRM IN OUR FAITH AND HOPE, REBUKING THE DEVIL AND PRAISING GOD as we move forward into 2011! God Bless! God Bless you all for your faithfulness to us and to Hayden! We love each of you!
 
 
Wednesday, September 1st, 2010--So much to fill you in on.
I feel so far behind in updating you all, life has been crazy busy and I'm having a hard time keeping up (lol).  Our Hayden turned 18 on August 12th, and yes it was bittersweet; we're so blessed to still have him with us and praise God for that blessing, but it is hard to face all the things he's missing out on and should be doing at this age.  We had a party for Hayden with all of his friends and it was amazingly awesome!  So many showed up to celebrate with us and they had a chance to catch up with each other too, it was so special to have "the whole gang" together again!  Thank you to Hayden's friends for still remaining by his side all this time!  Hayden has been recovering well from his last surgery, the drain was removed from the incision on August 16th and all is looking good.  The pump has been working great and will be refilled for the first time tomorrow, we're very curious and anxious to see how this procedure goes for Hayden; please pray that it's painless for Hayden.  Hayden will also begin a series of casting (casts) on his knees, the intent is to slowly stretch out the joints/tendons along is knees so that they can begin to bend normally.  With this he will also begin a period of out patient therapy once a week at St. Johns, this will be an intensive, aggressive period of therapy for him, trying to get the best benefits possible from the muscle relaxation the pump is creating.  Please pray for Hayden through this process as it will probably be painful for him to endure (as any aggressive therapy is for anyone), but we're sure that it's in his best interest.  If we can get his knees to bend Hayden will be able to get into a piece of equipment called a stander, this stander will allow Hayden to spend time in a standing position, which will be awesome for his circulation, respiratory issues, and help stretch his feet back out.  Imagine not being able to stand for 3 1/2 years, we're very excited for the progress this one seemingly simple thing can bring!  Please pray specifically that God will cover Hayden with His awesome mercy and grace as he takes these steps forward, pray that we as parents are making the right decisions, that God is leading us in all of those decisions.  Please pray for Hayden's recovery, comfort, healing, and that his knees will begin to bend more and more.  Pray that he's able to get into the stander and that it feels absolutely liberating for him, and most of all please pray for Hayden's endurance through his own walk on this earth.  Please pray for the broken hearts of two parents and two siblings who are trying to endure our walk of faith with as much grace and faith as possible.
 
Thursday, August 5th, 2010--Hayden is home
Thank you everyone for your prayers, calls today, and for always being there.  Hayden made it through surgery like the trooper he is, he was in the operating room for a little over an hour and did have a hematoma under the incision.  The hematoma was drained and the site was cleaned out.  As a precaution the fluids removed will be cultured to look for any infection or bacteria.  Hayden came home with a drain in the incision this time, it will be there at least until Aug. 16th when we go back to see the  surgeon.  He is also back on antibiotics, also as a precaution.  We were blessed today with friendly nurses, a great surgeon, and calm in the midst of stress; we have no doubts that YOU are partly responsible for these good fortunes.  The other good news is that the pump is working great, exactly as it should be!  It has made a significant difference in Hayden's muscle tightness (tone) and spasticity.  We love and appreciate you all! I will make a new post in a few days to let you know how he's doing. Please continue to pray for healing, no infection, and no more complications.  God Bless!
 
 
Wednesday, August 4th, 2010--3rd surgery for Hayden 
I'm extremely late in getting you all updated, but we found out late on Monday that Hayden will be going into surgery again tomorrow morning (thrusday, aug. 5th).  There is a hematoma under the skin and it has to be drained.  Hopefully this will be short and not as invasive as the other surgeries.  We have to be at St. John's at 7:30 am and should be home tomorrow evening.  I'll post tomorrow night as soon as we get home!  Please keep Hayden in your prayers! God Bless!
 
 
Saturday, July 24th, 2010--Hayden is home from surgery
I'm so, SO sorry for not getting a post on here before now to update everyone.  Hayden made it through surgery just fine on Thursday and they were able to save the pump.  There was some fluid around the pump that was taken for cultures to see if/what bacteria is there.  We actually even re-learned a lesson we already knew; God is in the details!  Turns out that the pump in Hayden's abdomen was having pressure problems because the "pocket" that was made to hold the pump (within the fatty tissue) wasn't big enough.  The surgeon said the tissue underneath the pump was no longer healthy and yellow, but was already turning grey.  So, YES, it's a blessing that the staple was ripped, that the incision got infected, and that Hayden ended up in surgery...sound's crazy to say it!  We brought Hayden home late Thursday and he had a decent evening due to all the pain meds.  First thing Friday morning, chaos found our household!  Hayden's heart rate jumped up into the 160's even 170, he began having seizures and his new incision started bleeding quite heavily.  It took several hours and many drugs to get his heart rate down into the 130's, the surgeon wasn't too worried about the bleeding and told us to keep a cold compress (ice pack) on it to help shrink the capillaries.  The bleeding did eventually stop late yesterday afternoon and Hayden has been calmer but he's been running a fever today and his heart rate has stayed in the 100's.  He is on another round of antibiotics and has pain meds to try and help his discomfort.  His stomach is extremely bruised (black and blue), and I'm sure he's in a lot of pain.  Please keep him in your prayers,  we all know doctors have limitations but God has none.  Pray for healing, relief from pain, seizures, fever, and infection.  God Bless!
 
Tuesday, July 20th, 2010--Hayden will be going back into surgery on Thursday July 22nd.
After meeting with the plastic surgeon on Monday, Hayden will be going back into surgery on Thursday morning.  They will reopen his abdomen and clean out the infection, the goal is to hopefully save the baclofen pump, but there are no guarantees.  These pumps collect infection, if there is infection around the pump they will have to remove it.  This would be a huge, unfortunate set back since it has been working so well.  We of course need your prayers for Hayden, that our Lord Jesus will wrap his loving arms around Hayden and all those involved in this surgery, and his medical care on Thurs, that the infection isn't around the pump so that it can be saved.  I'm going to be honest and tell you that Mom and Dad need some serious prayers this week too.  The stress and anxiety of all of this feels like a huge weight, one that is getting harder and harder to lift.  While we're being honest, we also need prayers that God ease our hearts of anger, resentment, and disappointment in regards to the nurse practitioner who, hastily and irresponsibly ripped open the healing incision while trying to get a staple out.  It's so hard to not feel angry over this woman's lack of humanity, simply because it was easy to not treat Hayden as any other human being because of his condition.  I can't imagine that she would sit still and have her flesh ripped open.  There was also a lack of procedure, as this woman didn't bother to wash her hands, or wear gloves to protect Hayden from infection when she tore the incision open.  We're finding it extremely hard to find forgiveness in hearts at this moment and honestly need to be lifted up to our Heavenly Father.  Hayden's surgery will be at St. Johns, he has to be at admitting at 6:30 am, we're not sure of the exact surgery time just yet.  I will post again on Thurs once everything is over and he's settled.  Thank you for being faithful, for helping us feel comfortable enough to be honest, and for loving our Hayden.  God Bless!
 
Sunday, July 18th, 2010--Some set backs regarding Hayden's incision
Since my last post we've had some set backs with Hayden's front incision site.  He went to the doctor one week after the surgery to have his staples removed, but one was in wrong and wouldn't come out.  The nurse Joe, was so good and worked with it for 20 min. or so trying to remove it gently.  Joe eventually had to go get help and returned with a nurse practitioner lady.  She didn't wash her hands, didn't put gloves on, and started messing with the staple; she just ripped the incision open.  No humanity, no compassion, no consideration how that might feel to Hayden...she just ripped it open an entire inch.  If you saw John's facebook status that day, it was a quote from me saying, "Oh I'll calm down, I'll calm down when I'm good and ready!" Now you know why I was so upset!  Since then Hayden's had an open wound on his incision site that won't heal, and is of course infected.  The hole is about the size of the end of your thumb, and is literally a hole down into his abdomen.  We saw the doctor again this past Wednesday, they've put Hayden back on a pretty strong antibiotic and are sending him to a plastic surgeon this Monday (tomorrow) to see if it will require surgical intervention.  Please pray for Hayden, Pray that God heal this incision, remove any infection, and that Hayden doesn't have to have any more surgery! Please!   On a more positive note, the pump is working exactly as it should, the level of medication being pumped into the spinal cord has been increased twice already, and Hayden's muscles are responding exactly as they should...relaxed!  GOD IS SO GOOD!!  His knees can now be bent to about 80 degrees and we may be able to start with serial casting this week.  Serial casting is a continuous phase of stretching out the knee joints slowly, they will bend Hayden's knees as much as possible, then make a cast of that knee position.  Hayden will then wear these casts off and on, on a daily basis, to beging to sustain the stretch.  Ultimately this surgery was the right choice and it's working perfectly!  We just need your help with prayers for Hayden's healing! Prayer, faith, and standing united in the belief that GOD CAN HEAL ANYTHING are the keys to receiving our miracle.   REBUKING THE DEVIL AND PRAISING GOD! God Bless!
 
"The Lord is my rock, and my fortress, and my deliverer; my God, my strength,
in whom I will trust; my buckler, and the horn of my salvation, and my high tower.
I will call upon the Lord, who is worthy to be praised: so shall I be saved from mine
enemies.  In my distress I called upon the Lord, and cried unto my God: he heard my
voice out of his temple, and my cry came before him, even into his ears."
 
 
Sunday, June 27th-2010--Hayden recovery update
It's been five days since the surgery and Hayden's been doing good.  He has unfortunately stayed quite a bit more "doped up" than we would like, but he seems to be comfortable.  His recovery process so far has been very steady (huge blessing) with only a few minor issues.  The incision on his back was draining more than we were comfortable with, but seems to have stopped.  The dressings came off yesterday and all looks good, the skin looks healthy and there are no visible signs of infection.  Hayden will go back to the surgeon on Wednesday (this week) to have the staples removed and then he will see his rehab dr. every week, for a total of 4 weeks, after that.  Thank you again for all of your prayers!  God is continuing to bless Hayden's recovery every day.  God is so awesome, He's always there, He never changes, His mercy and grace are unending/life altering, and He carries our burden with us.  I love to see the blessings and works of God in the midst of our walk, and I love to share them with anyone and everyone who will listen (lol).   May God bless you and yours!
 
         "Come unto me all ye that labor and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.  For my yoke is easy and my burden is light."               Matthew 11:28-30
 
Tuesday, June 22nd-2010--Hayden's home
Hayden did so great today!  We had a bit of a rough start with him having some small seizures in the pre-op room, and they had a really hard time getting an IV started (this is very normal, it eventually had to go in his footl), and of course Mom was an emotional mess, but Hayden made it through like a trooper.  His surgery lasted about an hour, they were able to use meds through the IV to keep him asleep and didn't have to intibate him (PRAISE GOD), and the surgeon seemed very happy with how Hayden did.  We were so blessed today by some awesome friends who showed up today to help support us, the amazing nursing staff at St. John's Surgery Center, a fantastic surgeon, anesthesiologist, and friend who was in the surgery room with Hayden, as well as by all the prayers lifted up in Hayden's name by all of you; we couldn't have asked for anything more, or anything better today. We couldn't walk this walk without you, thank you so much for your love and devotion!  Thank you Lord, Father...You lift up our heads, and help carry our burdens, thank you for bringing so many prayers warriors onto our team, and for making our walk of faith a little brighter.  I'll make sure to add more posts over the next few days to keep everyone informed on how Hayden's doing.  God Bless you all!
 
 
Sunday, June 20th-2010--Hayden's surgery will be this Tuesday, the 22nd 
Hayden will go into surgery Tuesday to have the baclofen pump implanted, he has to be at the St. John's surgery center at 11:00 and should go into surgery around 12.  Even though we've made this decision and stand firm in God's plan, there is a great anxiousness amongst us.  This is our first born, and we've fought so long and hard to keep him alive and well (with God standing beside us the whole way)...it's hard to hand over our child and allow others to be responsible for him, especially after the experiences we had at Cox while he was there after the accident.  We 100% believe that God led us to this decision, so the good news is that there's no fear...but definitely anxiousness.  The good news, is that we learned three years ago that we have no control and that EVERYTHING lays in GOD'S HANDS...AND GOD IS GOOD ALWAYS!  Hayden will be under anesthesia, he will have an incision on the right side of his abdomen where the pump will be placed, and another incision on his back where the catheter will be threaded into his spinal cord.  The Dr. will drill a hole in one of the vertebrae at Hayden's waistline for the catheter to go through, then with a flourascope (to see what they're doing within the spinal cord) they will thread the catheter up through the spinal cord to about mid back.  This is supposed to be an outpatient surgery, and Hayden should be able to go home the same day; this is where our prayer warriors come in.  Please lift this prayer request up to our Heavenly Father, ask Him to wrap His loving arms around Hayden and protect him during this surgery. Please also pray that God place His mighty hands around the surgeon who will be performing the surgery and that He use this surgeon to His glory, ensuring that Hayden will be safely in God's hands at all times.   We are continually amazed at your dedication to our lives, to Hayden, to our survival as a family; thank you for your compassion and uplifting prayers.  Our Heavenly Father is also dedicated, compassionate, and He continually brings new prayer warriors into our paths.  Friends, new and old, we humbly ask you once again to come to Hayden's defense against the devil, evil, and the unknown...please lift him up unanimously, boldly, confidently, in faith, to our Lord and Savior...God Bless you all!  Thank you for your love and support, and thank you for continuously lifting Hayden up to our Heavenly Father; we need Him to hear it in numbers!  God Bless you all, I will make sure to update on Tuesday evening once we get Hayden home and settled.
 
Wednesday, June 2nd-2010--Update on Bacolofen Procedure
Well, good friends and prayer warriors, it was very obvious yesterday that Hayden had been lifted up in prayer and that our prayers were being answered.  The trial went very well for Hayden, and it was obvious that this pump will work for him in the future.  The dr's and therapists assign levels of spasticity with numbers 1 through 5,  with 5 being the worst spasticity level.  Hayden has been at a 5 for a good year a least, during the last trial Hayden's right hip was the only thing to change in spasticity level and it only moved down to a 4.  Yesterday after the injection, (now we are only talking about muscle groups below the waist here, because that's all that is targeted) Hayden's muscle spasticity ratings were all  3's and 2's...HALLELUJAH, PRAISE JESUS!  Even with my hesitation and fears regarding the surgery and pump implantation, yesterday was the first time I've felt excited about the possiblity of this pump.  Seeing the muscles in Hayden's legs loosen up enough that he could move his knees (as far as the locked joints would allow) and to see his feet be able to be stretched some was so uplifting to my heart.  This is only the beginning of what this pump could do for Hayden!  Once the pump is inserted and working, and Hayden's muscles begin to relax permanantly, then we can slowly begin to stretch the joints back out and hopefully greatly increase range of motion for him.  A huge personal goal we have is to get his knees to bend so that we can get him into his stander, which to date he's never been able to use.  He has to be in a sitting position (with knees bent) to get into it, but once we can accomplish this hurdle Hayden could be in the stander every day, bearing his own body weight on his feet, which in turn will also help to stretch his feet muscles back out.  I can't imagine how awesome it will feel for Hayden to stand, for the first time after three years!  We asked God to show us His will, to give us His definite answer regarding whether or not we should move forward with the surgery to implant this pump...well, His answer was very clear yesterday!  We have no doubts, our fears have been quieted by God's clear answer, and with the army of prayer warriors Hayden has behind him, we can now move forward with confidence.  From here we are just waiting to find out what the surgery date will be, and then we move forward with God leading every step of the way.  Thank you all for keeping Hayden in your prayers, for constantly lifting him up, but for also adding in all the new prayers that present themselves.  God Bless you all!
 
 
Monday, May 31st, 2010-Update on Hayden and new procedure date
I must first apologize that I haven't updated you since Hayden's last procedure, our lives seem to be ever changing which can be chaotic (lol).  Hayden made it through the first procedure well, he did have a lot of seizures for the week or so afterwards but he's come through it just fine.  Since then he's seen his neurologist (for seizures), and he just had botox with his rehab doctor last week.  Hayden's new trial procedure date will be June 1st, yes that's right, TOMORROW!  We will go in at 6:30 am and remain in the hospital for at least eight hours.  If you remember (or read the previous posts) they will be injecting double the amount of medication into Hayden's spine this time, which can affect his breathing/respiratory status.  While in the hospital tomorrow, Hayden will also be having his stomach tube replaced once he's moved to the pediatric unit.  It is our deepest hope and prayer that you will continue to keep Hayden in your prayers, especially tonight, tomorrow and over the next few days.  Please pray specifically that God will spare Hayden any pain or discomfort, that all procedures go well without any complications, and that HE will reveal His plan to us regarding this baclofen pump; if this procedure tomorrow fails to work again, then there will be no pump...no surgery to come.  We have struggled and struggled with these decisions and are on our knees asking God to show us His will...in certainty.  We are continually amazed at your dedication to our lives, to Hayden, to our survival as a family; thank you for your compassion and uplifting prayers.  Our Heavenly Father is also dedicated, compassionate, and He continually brings new prayer warriors into our paths.  Friends, new and old, we humbly ask you once again to come to Hayden's defense against the devil, evil, and the unknown...please lift him up unanimously, boldly, confidently, in faith, to our Lord and Savior...God Bless you all!
 
 
Wednesday, May 5th, 2010-Hayden's procedure
Hayden was admitted to St. Johns yesterday at 7:30 am for his trial procedure/spinal tap/medicine injection into his spine and was released around 4:00pm.  He was quite a trooper and endured all that yesterday brought, but the procedure didn't work as hoped.  A physical therapist would come in every hour to work with Hayden, moving around his arms, legs, and trying to bend his knees to assess how well the medication was working.  Although it helped Hayden sleep really well yesterday afternoon, it never really loosened his muscles or tendons.  The physical therapist commented that the tendons that run along side his knees feel more like bones, and that they may have permanantly lost their elasticity.  I've definitely been weary of this procedure (and the surgery that would have come next) but I was truly hoping that Hayden would feel some relief yesterday, and that we would be rejoicing over the movement (or range of motion) that we would achieve.  The good news is that Hayden's doing fine, he's at home and resting comfortably and we still believe firmly in God's plan.  Our Heavenly Father has carried us, and especially Hayden, through so much that this seems like a minor set back.  From here, the doctors are discussing doing one more trial/spinal tap and doubling the amount of medication that will be injected to see if this can still help Hayden.  Please pray for God's will, mercy, clear direction, and relief for Hayden.  It was hard to decide to do this procedure once, I'm sure you can imagine that we're not thrilled about doing it a second time.  We're stuck in the middle, Hayden desperately needs some help/relief from his muscle spasticity, but we want to feel sure that we are following the path God has prepared; for without God's will and divine plan, we will flounder.  Our plan, as always, is to charge on with God in the lead!  With God before us and your prayers behind us, we are truly blessed!  
 
Tuesday, April 20th, 2010-HAYDEN'S PROCEDURE POSTPONED
The last few days Hayden has been presenting some new symptoms/behaviors that have been hard to diagnose and they hit a peak yesterday.  Hayden experienced a very rough day yesterday, he was exhibiting "seizure like" behavior coupled with high heart rates (120's and up, from 3am to 6pm), severe agitation, and his muscles were locked up tight.  Due to these symptoms and how his day went, John and I made the executive decision to postpone this procedure in hopes that Hayden will get over whatever is going on with him.  It made sense to us not to introduce more stimulus/pain into his body when he was already experiencing something as severe as yesterday.  The new date for this trial/procedure is MAY 4TH, 2010; same drill as before, we'll arrive at 7:30 in the morning and the procedure should start about 8.  Thank you for your continued prayers in this and all matters regarding Hayden; every prayer counts!  
 
 
Sunday, April 18th, 2010
The prayer vigil was amazing!  Thank you to all who were able to attend in body, and to those who were with us in spirit!  Thank you to God for meeting us there!  We are so moved by everyones love and support of Hayden and our family, we are truly blessed!  Hayden has been doing well since the vigil, he hasn't been sick with respiratory stuff at all! PRAISE JESUS!  He has had several short bouts with seizures, not sure why this is still happening but it's definitely still 100% better than what he was going through during Dec. and early Jan. 
Our new prayer request: After  having a consultation appointment with the surgeon regarding the baclofen pump for Hayden, it has been decided that we will proceed with the "spinal tap/baclofen trial" on Tuesday.  He will be admitted to the hospital for the entire day (Tuesday, April 20th) and have the baclofen injected through a spinal tap, this trial is meant to prove whether or not the pump will work for Hayden before jumping directly into the surgery.  For those who don't know, it has been suggested that Hayden needs to have a baclofen pump to hopefully reduce the spasticity in his muscles, and thus relieving his body from the pain that he must be experiencing.  This is an elective surgical procedure and one that has been causing us great anxiety.  A pump would be surgically inserted into his abdomen and a cathetor would run from this pump into his spine; it would deliver the dose of baclofen directly into his spine.  Baclofen is a medication that he takes orally now, it's purpose is to alleviate spasticity and the drawing up/tightening of his muscles.  When taken orally the dose of meds he gets is at a very low level as compared to getting the full dose directly to the spine, where its designed to work.  The sources of our hesitation are: surgery, risk of infection, if it malfunctions and overworks it will cause repiratory failure, if it malfuntions and doesn't dose enough it will cause organ failure...WOW!  It's hard to make a decision that's "elective" and could possibly kill Hayden, but it's also hard to not do something that could potentially alleviate alot of pain/discomfort for him.  We're praying for guidance in God's will regarding this situation, as we want to feel sure that whatever decision we make it's based on God's will.  We've fought long and hard to keep Hayden here and well and we definitely don't want to make the wrong decision now.  Please lift this prayer request up to our Heavenly Father, ask him to reveal His will to us, and to wrap His loving arms around Hayden and protect him during this procedure. Please also pray that God place His mighty hands around the surgeon who will be performing the spinal tap and use this surgeon to His glory, ensuring that Hayden will be safely in God's hands at all times.   Thank you for your love and support, and thank you for continuously lifting Hayden up to our Heavenly Father; we need Him to hear it in numbers!  God Bless you all, I will make sure to update on Tuesday evening once we get Hayden home and settled.
 
 
Tuesday, March 9th, 2010

3rd Anniversary Prayer Vigil For Hayden Stanley

As the three year anniversary approaches we want to encourage you to not lose faith, to keep praying and believing in a miracle. Thank you for keeping Hayden and our family in your hearts, and for remembering to keep Hayden in your prayers. Please come join us for the 3rd year anniversary of Hayden's accident, let's ...lift him up to God and believe unanimously that miracles do happen.

There will be refreshments and new "support Hayden" t-shirts available.

Time:  7:00PM Tuesday, March 30th
Location:  816 W. Republic Rd., Springfield Mo. 65807
                         Park Crest Baptist Church
 
Thursday, February 11th, 2010
Since my last post Hayden developed pneumonia due to the extended period of time that he had to go without the percussion vest treatements for his lungs; the  good news is, he's been doing great!  He finished antibiotics last weekend and is doing so much better.  We're now able to run respiratory treatments as we should and Hayden's back to being his "normal" onry self.   Since he started the second seizure medicine on Jan. 13th, he's only had one small episode of seizures (last week), but we were able to stop it quickly with medication.  Isn't that amazing?     The past two weeks have been so encouraging to our hearts, our hope, and our faith.  Hayden is interacting with us, turning his heard towards whoever is speaking to him, he's been moaning and sighing everytime we encourage him to talk to us.  God is answering your/our prayers everyday!   Due to Hayden's pneumonia we had to reschedule the surgeon appointment, but will be meeting with him on the 22nd.  Hayden will also see his rehab doctor on the 25th and get more botox in his arms and legs; this is something he's been doing for over a year now and he gets the injections every 3 months to help with spasticity.  Thank you for keeping Hayden in your prayers, God is blessing Hayden because of them.  Please continue to pray for Hayden's health, restoration, and God raising Hayden up!
 

Thursday, January 21st, 2010

 Hayden's blood tests turned out good; platelet levels were within normal range so he was able to start the Depakene the day after his last appointment.  The amazing thing about that statement is what comes with it; Hayden hasn't had any seizures since the medicine change...not one!  I know sometimes it's natural to wonder how we survive the stress of the situation and keep our sights focused on God, well this is exactly how!  God hasn't yet blessed us with the big miracle of Hayden waking up from the coma, but he grants us small miracles on a daily basis.  Without our faith, God's promises, and your support, we would be drowning; but God gives us the grace and the gifts sufficent for each day.  Hayden has been doing amazingly well compared to what he went through the past month.  We were finally able to start his breathing treatments again this week, whereas before they were too stimulating and would cause seizures.  The respiratory vest treatments are crucial to his condition, because without them he ends up with chronic pneumonia's and in the hospital.  Even though Hayden wasn't getting the treatments for over a month, God has seen him through it, kept him well, and now he's back to "normal."  Thank you for your prayers and for continually lifting Hayden up; your faithfulness in prayer shows up in our daily lives and we are eternally grateful.  Our new prayer request comes in the form of guidance: Monday morning we have a consultation appointment with a surgeon, as it has been suggested that Hayden needs to have a baclofen pump.  This is an elective surgical procedure and one that has been causing us great anxiety.  A pump would be surgically inserted into his abdomen and a cathetor would run from this pump into his spine; it would deliver the dose of baclofen directly into his spine.  This is a medication that he takes orally now, it's purpose is to alleviate spasticity and the drawing up/tightening of his muscles.  When taken orally the dose of meds he gets is at a very low level as compared to getting the full dose directly to the spine, where its designed to work.  The sources of our hesitation are: surgery, risk of infection, if it malfunctions and overworks it will cause repiratory failure, if it malfuntions and doesn't dose enough it will cause organ failure...WOW!  It's hard to make a decision that's "elective" and could possibly kill Hayden, but it's also hard to not do something that could potentially alleviate alot of pain/discomfort for him.  We're praying for guidance in God's will regarding this situation, as we want to feel sure that whatever decision we make it's based on God's will.  We've fought long and hard to keep Hayden here and well and we definitely don't want to make the wrong decision now.  I have to honestly tell you that in my heart I just don't want to do it, something doesn't feel right but I don't know why yet.  Please lift this prayer request up to our Heavenly Father, ask him to reveal His will to us.  We love you, my friends, and as always love your faithfulness to our family.  God Bless!

 

Wednesday, January 15th, 2010-Hallelujah

Wow! We've had quite the day, to say the least.  Hayden was having seizures all morning which made it very hard to get him up and ready to go to the neurologist appointment.  We were running late, arrived at the wrong section of the building and had to race through a tunnel to get to the right place (because if we were more than 15 min. late we would have to reschedule the appt).  Not to worry, God sent us some angels to show us the way and escort us all the way to the reception desk (and even though we were 22 min. late, Dr. Fredericks agreed to still see us); can I get an AMEN and a PRAISE JESUS!?  I couldn't let this act of generosity go, so I of course took the opportunity to pass out Hayden bracelets and talk about the website. (lol)  Once all of the stress of getting to the appointment was over and we actually got to sit down with the doctor, God took over.  We were able to sit and talk to Dr. Fredericks for a good 20-30 min, HE LISTENED TO EVERYTHING!  We discussed our concerns, frustrations, expectations, things we've observed with Hayden's seizures, the med change...ALL OF IT!  I can't even begin to put into words how awesome it felt to be heard, and to feel like we have a game plan again.  The good news is that all of this business about bone marrow failure wasn't even true; I think we're just going to skip the part where we wonder how someone (the old Dr.) could be so cruel...GOD BLESS HIM!  Hayden had blood tests done immediately after the appointment and if those turn out alright he will go back on a low dose of Depakene starting tomorrow (this will be in addition to the other med. he's already on).  We prayed and prayed on this new neurologist, asked everyone we know to pray, and Hayden and I prayed on the way this morning while John put gas in the van; I have to tell you that we feel God led us to Dr. Fredericks and put his hands on the whole situation.  Thank you so much for your support and prayers, you've saved us (most importantly Hayden) once again from a incredibly stressful situation.  Now we need your prayers that the blood tests will be fine, that the new combination of meds. will work, and that Hayden begins to get immediate relief from all of these seizures!  Our Heavenly Father never ceases to amaze me with his love for us, for Hayden...we're lifting our hands to heaven, praising our Father for his mercy and grace...

 

Monday, January 4th, 2010-Looking forward to amazing things in 2010...

Hayden finally recovered from the bronchitus, but is still having seizures daily.  He has some random seizures during the day, but the majority of them are starting about 7 pm and will continue up to 3 am.  The good news is that these are small seizures (not grand mal) but he has them recurringly, one after the other all night long.  The emergency meds are no longer working to stop the seizures because his body has built up a resistance to them, so we are left virtually helpless to relieve Hayden.  It's also important to tell you that Hayden's Neurologist has essentially given up on controlling the seizures which is one of the most devastating things we've had to hear.  We feel the biggest issue here is the seizure med change that happened throughout Oct. to Dec. 1st; since Dec. 2nd, Hayden has been having seizures everyday.  Before the med change he was only having about one grand mal seizure per month.  December has been one of the most stressful, depressing, anxious months we've faced in the past year; maybe even since Hayden came home from St. Louis Childrens Hospital.  I can't begin to tell you how much your prayers, friendship, and kind words have carried us through the past month because their are no words that seem adequate.  The good news my friends, is that we will NEVER GIVE UP!  Our God is so gracious, merciful, and faithful and we will forever put our sights, and our trust, on HIM.  We are currently searching for a new neurologist, one who will listen, respond respectfully, and be willing to never consider "throwing in the towel due to Hayden's injury."  Please continue to keep us (especially Hayden) in your prayers, we count on your prayers lifting us up to our Heavenly Father to carry us through times like these. 
Specific Prayer Requests: Hayden's seizures to stop, medication to work, a new neurologist to take Hayden as a new patient and to help him.

 

 

 

Update...Sunday, Dec. 13th, 2009

Hayden really needs your prayers at this time!  He has been struggling for two weeks now with a severe case of bronchitus, high fevers, high heart rates, and was back on oxygen a week ago.  Either the sickness and fevers, or the coinciding seizure med changes, have greately increased the frequency of Hayden's seizures; he's having several everyday now.  As parents we feel inadequate to help him through this, it feels like he's either totally doped up on seizure meds, or having seizures; there doesn't seem to be much in between right now.  It got so bad on Friday night that we had decided that if he had one more seizure we were going to call an ambulance to take him to the hospital, thank God they finally stopped about midnight.  We find ourselves struggling during this holiday season, it's so hard to go through the motions of traditions without Hayden.  It's hard to find joy in the everyday, especially during times when he's so sick.  Please lift Hayden, and all of us, up to our Heavenly Father who knows our pain but can also comfort and soothe.  Please continue to pray for healing for Hayden, but also for relief from this sickness and from the seizures.  God Bless you all, our faithful prayer warriors; without you we'd be floundering!  Feeling Redeemed by His Mercy, and Consumed by His Grace

 

Hayden's new MRI results...Tuesday, Nov. 17th, 2009

Ever since we got Hayden's first MRI results, we have prayed and prayed that God would take care of the extra fluid on Hayden's brain so that he wouldn't have to go through a surgical procedure.  Knowing that Hayden had too much fluid on his brain, we went to the neurosurgeon appointment today anticipating that we would hear one of three things; either Hayden would be getting a shunt or have another procedure with an endoscope to create a new pathway to allow spinal fluid to drain, or God had answered our prayers and relieved the fluid already.    As Dr. Sami was telling us his findings, we were totally unprepared to hear what he was saying, were speechless, and frankly a bit stunned.  Due to the global (or wide) severity of the injury to Hayden's brain, he has lost a lot of brain matter.  The extra fluid is actually helping to support the remaining brain tissue, and therefore can't be removed.  Dr. Sami feels that because of this Hayden isn't a candidate for surgery, and on the contrary, if the fluid is removed then the brain will collapse within itself.  Well, it's not the answer we were looking for but there will be no surgery for Hayden.  Isn't it funny how God can answer our prayers in a way that we haven't even considered yet?  Dr. Sami feels that Hayden's chances for improving in the future are uncertain due to Hayden's overall neurological assessment.  He encouraged us to keep working with him and doing what we're already doing, and to not let him discourage us.  I think the devil is trying very hard to tempt us to lose hope, lose faith, and give up; but he's underestimated our faith in our Lord Jesus Christ!  Nothing is impossible or too big for God, and nothing is out of His reach!  I remember a devastating time when Hayden was in the worst shape of his life, with a LESS THAN ONE PERCENT chance of living; YET, HERE WE ARE ALMOST THREE YEARS LATER!  There were so many people lifting Hayden up in prayer and believing that God would save him, and we got our miracle!  I think it's time to increase what I like to call "The Hayden Prayer Movement," by getting as many believers as possible to lift him up in prayer.  Prayer warriors thank you for being faithful in keeping Hayden in your prayers, now we need your help even more.  Please, please, please share Hayden's story, pass this website to friends through facebook and myspace, email this link to your email contacts, approach people at your church about prayer lists, etc...whatever you have to do to get prayers lifted up for Hayden.  Prayer, faith, and standing united in the belief that GOD CAN RAISE HAYDEN UP are the keys to receiving our miracle.   REBUKING THE DEVIL AND PRAISING GOD! God Bless!

 

 

New MRI's with anesthesia...Tuesday, Oct. 3rd, 2009

Hayden's new set of MRI's is scheduled for this Friday (Nov. 6th) at 8:30 am.  He's been very sick lately and just started a second round of antibiotics yesterday.  Prayer warriors, please help us pray that Hayden gets well, that his lungs clear up so that he will be able to have the MRI's on Fri.  Also, please pray for his health and safety as he's put under anesthesia for these MRI's.  We will get the results on Tues, Nov. 10th and find out then what the next step will be in eliminating the extra fluid off of Hayden's brain.  Thank you for your love, continued support, and faithfulness in prayer! God Bless!

 

 

 

Special Prayer Request...Tuesday, Oct. 13th, 2009

 

We have a very special prayer request and need your help!  We're very excited to announce that we are working on a 5k run/walk fundraiser for Hayden in the Spring.  We are just now in the planning stages and feel it's vital that God's hand be on us as we step forward.  Please help us by praying that God will lead us to the right people who can help us present a magnificent event, that God will send us lots of volunteers and sponsers, and that all we do will glorify God himself!  Hayden is in need of a new/larger hospital bed, he's so tall that the one we have (the only one medicaid will pay for) is too small.  If you've ever seen him in it then you know exactly what i'm talking about, he literally touches both ends of the bed!  Our goal with this fundraiser will be to purchase Hayden a new bed, probably a craft matic bed that's longer, wider, and has taller rails on the sides.  God Bless you all and thank you for being faithful prayer warriors for Hayden! Love you! Laurie

 

We Got Hayden's MRI Results Today...Tuesday, Oct. 5th, 2009 

                                       It's been a heavy day, so take a deep breath, say a prayer, and here we go;

John and I have had MANY questions about Hayden's brain injury regarding brain pressure, swelling, blood clots, extra fluid, etc. (mostly because there hasn't been any scans or studies done since he was in St. Louis Childrens Hospital). This has been on our hearts for quite a while...not that we want there to be something wrong, but with the intent that if there is something then lets find it and help him. For that reason we requested a meeting with Hayden's Neuro Surgeon (who we'd only consulted with once in Dec. of 2007) and a new MRI scan. Most of you know that Hayden had those scans about 3 weeks ago, and that he wasn't cooperating that day (by being still, even with two valum in his system). We weren't sure what to pray for specifically because we definitely didn't want there to be anything wrong, so we prayed for information and that if there was something that could help him that the Dr. would find it. We finally had the meeting with the Dr. today to go over the results of the MRI and as we suspected, most of the scans are unreadable, only two were good. From those two scans several things were immediately evident to the Dr.; Hayden's brain has atrophied (or shrunk) some, and there is WAY TOO much fluid on his brain and within the central ventricles (that sit right above the brain stem); essentially this condition is called hydrocepalus. That information hit us like a brick, but thank God for putting it on our hearts and moving us to start asking questions! From here, Hayden will have to have another MRI but this time he will have to be completely sedated. I'm sure it goes without saying, that sedating someone in a coma is very scary and risky, because he could stop breathing. However, it will be done in the St. Johns POPS unit (pediatric out patient surgery) and they will moniter him very carefully. The Dr. will specifically be looking for a blood clot or scar tissue that is blocking the pathway that spinal fluid normally drains from (right next to the brain stem, where Hayden does have damage). After the MRI one of two things will have to happen depending on the findings; he will either have to have a shunt placed in his head, or if they do find a blockage of some sort (which is where the Dr. is leaning more towards) he will have to have a type of brain surgery to create a new pathway for the spinal fluid to drain. I know that's a lot of information, but I had to tell you everyting so you would know what to pray for specifically. We'll be praying that we won't have to wait too long to get the appointment for the scans, that the sedation goes great, without any problems and that God will show the Dr. exactly what he needs to find to help Hayden. Your prayers are so important and we truly believe God brought us to these findings, and therefore we believe He is ready and willing to answer our prayers; we just need your help in lifting them up! God Bless you all for your faithfulness to us and to Hayden! We love each of you!
 

Stomach Tube Replaced Today...Sunday, October 4th, 2009

We got a surprise this morning when Hayden's stomach tube just fell out after feeding. Crazy kid likes to keep us on our toes.  We actually are looking at this as a blessing in disguise because we've felt like something was wrong with the tube since early summer.  We even requested x-rays of it about a month ago and were told that it was in the right place.  Apparently God put this "feeling" on our hearts for a reason.  The good news was that the Dr. was on call and met us on it PICU floor and replaced it in no time.  Hayden didn't have to go in an ambulance, no emergency room, and no long stay in the hospital!  Thank God for every blessing!