Saturday, April 30, 2011

Noah Becomes A Big Brother

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Noah's little brother, Luke Everett Warden arrived on April 11, 2011. Chris and I had decided to keep news of Noah's pending sibling private until after his birth, and celebrate the arrival of new life once he came. Luke is a little miracle of his own, surviving a car accident with me last fall. God has a plan for everything and he wanted Luke here. Noah isn't quite sure what to make of little Luke yet. But hopefully with time they'll be the best of friends. From the moment I looked at Luke I had this little voice almost say, he's your little lion, he will be here to help Noah, to protect him to guide him. So that's what I call him my little lion. Not to mention that he has this blond hair, a surprise to both his daddy and I.
Luke Everett Warden "Our Little Lion"

I must admit my emotions are running high. I feel so blessed to have both boys in my life, yet I significantly twinged when I witnessed Baby Luke being able to suck on his fingers and hands at only four days old, something that Noah cannot do at nearly two and a half years old. There are obvious differences between the two babies I have brought home. And I suppose I fear Noah's future more now than I ever did before. I had nothing to measure it against. Now I see exactly what Noah should have been doing at this tiny age. It's so bittersweet, but I feel so robbed of Noah's babyhood. I had no idea that babies ate and went to sleep, I only knew a fitful distraught baby that never soothed to anything.

We saved Luke's cord blood and tissues with the hopes that someday we'll be able to use them to help Noah in his recovery. A very expensive task we took on to store these stem cells, yet we felt that we couldn't just throw this potential opportunity away for Noah in the future. It may make a huge difference in his life one day. This is something has significantly put us in even further debt, but I figure it can't get much worse than where we are, we basically have nothing anyway. And I thank goodness that there was one last open charge card for such a thing. We really have no idea how we're going to pay for it, or even the annual storage fee, but we felt like we couldn't let this opportunity to pass us by if it could indeed help Noah. They are currently doing sibling stem cell trials for cerebral palsy and expect clinical trials to be over in two years or less. Luke's tissues provided 855.40 million cells that we could save. And I pray with every ounce of my soul that someday somehow, Luke will have provided the medicine we needed to change Noah's life. What an amazing thought that a younger brother could make such a difference in his older brother's life.

Noah is doing much better with his illness. I think we are over the worst, yet I am watching him, guarding him, to assure that he doesn't have a relapse. He's on a second round of antibiotics, since it's a bit harder for him to clear his lungs than children that are mobile. I'm sure the days ahead will be a bit stressful as I figure out how to balance two boys, both that are not self-sufficient in anyway. I've had to put therapies on hold because I know that I cannot get both boys to therapy on my own, I have no help. Chris and my mother both return to work, and there is only me. God must have a plan, and I hope that he tells me what direction I'm supposed to go in. I feel a bit like a fish out of water - Just taking each day as it comes it's all I know how to do. It's all I've been able to do for the last two years, and I continue to ride this roller coaster called life. Mine isn't easy. Maybe it never will be, I don't know. But I'm still hoping God shoots those special arrows my mother was telling me about, those special arrows that come with just a little help to assist me along the way.

There is no doubt that things will be difficult, but it is my hope that there will be far more joy on the way. I'm hoping that little Luke will help Noah in ways therapy may not be able to. It's like I'm experiencing this completely high joy from Luke joining our family, to this really high low looking at Noah feeling the loss of all his motor skills, a helpless mom as I watch on as he simply can only lay on the floor and look up at me and smile. I long for God to help me now more than ever. Please help me heal my Noah. Please grant us all some sort of a resemblance of a normal life, please just give us an easier path, please hear my prayer. I keep asking, and asking and asking some more. Noah is the most precious little boy ever. He lights up dark corners of my days with a smile and laughter so big, he is so deserving of the blessings to be able to walk, and talk and sit or even crawl. I long to watch both my boys run together someday side by side. Please God let it be so.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, April 8, 2011

Still Sick...

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Noah is still struggling to get better. His cough is now pronounced, although not tremendously frequent. His appetite has been affected, he looks droopy and sad, sometimes I can catch a short smile or laugh in between the cries and moaning. I understand that he is sick, but I can't understand what he wants me to do when he cries. He can't tell me if he's uncomfortable and needs to sit, or lay down, or if he's hurting. I feel like I'm grabbing at straws, as is Chris and his grandma. All three of us taking turns trying to get Noah back to a good spot. I got him to eat cheesecake, he'll drink bottles really only for his daddy, and then there's nothing like falling asleep in the comfort of your grandma's arms. The fever has stayed down, I just assumed Noah would be more perky by now. I worry about him, hoping that pneumonia is all we're battling. They've checked his mouth, and ears and all... but I always worry what if there is just something else I am missing. This is truly a hard spot to be in, harder than I thought it would be when the time came. The lack of communication for me breaks my heart. I want so badly to talk to him... Even with Chris' help I'm down to mere hours of sleep, I cannot stop thinking about Noah and clinging to every sound on the baby monitor, counting his breaths to make sure he's receiving enough oxygen. Making sure I have a phone nearby should I have to place another emergency call for help. I of course am too still battling this illness, the same one I probably gave to him as much as I tried not to. He loves the taste of his antibiotics, which is great. We have no battles over taking medication. In fact when it's done he even gets a little mad that his dose is over and protests briefly. Like I've just taken away his cotton-candy treat. I worry about him not being able to clear his chest and cough things through like other children his age that are mobile. Without us he's stuck laying on the ground continuously. I'd feel so much more at ease if I could see signs that he was completely improving, but just like me, I'm sure this will take him a while to recover from. My hopes are that he'll battle it off quicker than I have been able to. I could tell Chris was a little sad over dinner tonight, he tries really hard not to dwell on Noah's condition, but it's hard to realize that this will be life-long for Noah and for us. He mentioned he'd do anything to make Noah okay and take away all his problems. And he would, this excellent father with an amazing heart would do anything... just anything for his "little buddy." As I write, they are currently snuggling together. As I can hear Chris whispering in his ears sweet nothings in an attempt to help soothe him to sleep. At the end of the day we don't have much, but one thing we're not short on is the love we have for each other. "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." — Christopher Reeves Love, Creative Commons License Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, April 6, 2011

104.4 Happens... and then you Pray

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I knew I couldn't dodge it forever, I wanted to, oh God how I wanted to for safety's sake. The idea of a seizure is beyond terrifying. Noah developed an illness. He didn't look sick, didn't really act sick. But I knew something was wrong when he didn't laugh at the television and acted really lethargic all day. He was hard to wake from a really late nap, which was completely uncharacteristic for him. So I asked Chris to dig out the thermometer out of our hall closet that I stashed way at the top just in case. Sure enough temperature reading of 102.9 at 8:30pm. My stomach sank. These things always seem to happen at night. So off to the hospital we went in the middle of the night. Noah showed no signs of congestion, so I didn't know if this was an infection or what I was up against. They took his temperature when we got there, and it had decreased by mere points. They finally were able to get a normal reading two hours later, and after a strep test, ear check and xrays it was determined that Noah had developed pneumonia. I was surprised because there was no cough to accompany it, but maybe I caught it so quickly there wasn't a cough to go along with it. We were relased of course at almost 2am in the morning, leaving Chris with only a few hours of sleep to function on. Noah's grandma came with us, as we needed all the hands we could get with an ailing Noah. He's getting so big it takes multiple people to hold and pass him off to. My little village of three...Chris, Grandma and I. They couldn't send me home with medication so I of course panic when Noah wakes up this morning with a temperature of a 103. 1 and rises to 104 within twenty minutes. I called Noah's grandma to see if she could find any place that was open to get Advil or Tylenol. And to fill his antibiotic prescription for me as Noah is too sick to leave the house like this. Of course off she went, even though it left her late to work. When something is seriously wrong with Noah it impacts the whole family in big ways. No one really understands, we don't have respite, or a nurse or nanny. We are it. And Noah isn't just a typical child with an illness. This is the first time I truly wish he wasn't non-verbal. Just be able to tell me what is wrong, he doesn't have to say mamma or dadda, just where does it hurt? Where do you not feel well.... I've gotten Noah's fever down to 102.1 for the most part of the morning and then he just spiked suddenly again to 104.4. His primary care physician said that they thought I should take Noah straight back to the hospital and so off we went again, as I called home the troops since they said we could be staying. The thing about ER visits is there is nothing quick about them. You wait and wait and then wait some more. The verdict is still that Noah had pneumonia and that we will alternate tylenol and advil every three hours to attempt to conquer this fever. And of course at the hospital Noah exhibited his first signs of cough. I probably won't sleep for days now as I watch over him praying that God spares him from seizures and allows me to get him well. I wish I could have post-poned this day longer. But you just can't control every little germ on earth no matter how hard you try. And I've tried hard for 27 long months. I've worked so hard to make sure he stayed as healthy as he possibly could. We are very tired, as we've spent more time at the hospital these last two days than we have slept. It's been a rough week for Chris and I. Please pray that Noah will conquer this quickly, and that seizures continue to stay away. He looks and acts so miserable and I just want to see him eating and smiling back at me again very soon. Love, Creative Commons License Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, April 5, 2011

The Gait-Trainer Has Arrived

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Noah has had a good week, he seems to be really enjoying his new Organic Pedia Smart, and I was lucky enough to score Medicaid assisting us with purchasing it on a regular basis through a local nutrition company. I wish they'd help with his pureed foods and such, but it sounds like we're on our own until he hits age five or is on WIC. I caught a cold, my first in years and I've been petrified I'd pass it to Noah. I'm so thankful for Chris and my mom's help. I don't know what I would do without them, they make trying to guard Noah from this germ a lot easier. I of course have scrubbed my skin off to no end after every kleenex use, trying not to breathe in his direction and am chasing all door handles and anything I can think of in the house with disinfectant toilettes. Nothing paranoid about me, but I know that if Noah gets sick it would be a million times worse for him that it is for me... not that I'm a bit happy about feeling as terrible as I do. But I'm in way prepared to fret over seizures, and an illness for him. Noah got his gait trainer today. A Blue Rifton Pacer. The verdict is still out. It's new. I don't know if he knows what do to yet. It will be a work in progress. And maybe when the weather gets nicer we can get outside and use it a bit more. We don't have a lot of indoor options with our current set-up. His head and trunk control still lacks so he kind of drapes himself over it and doesn't push off with his feet at all. He kind of looks like a limp rag doll. My heart ached for a bit. Not because he didn't automatically take off, it's just getting used to the idea that equipment like this is even necessary for him. This certainly isn't the dream you have for your child to be strapped to all these gadgets and apparatus. Noah also got to trial the cuddlebug. It's purple, but at least it's not pink. It weighs about 45-50lbs, not so cool. And it doesn't collapse down well to get it in and out of vehicles. Those seem to be the automatic drawbacks. And even though it has a sun visor I wish it were a little bit bigger as it won't catch as much sun as some of his stroller canopies do. I like that it's soft and squishy, I think Noah does too. It really feels like you're setting him in a big pillow. It's been crash tested, travel approved, and can also become a seating device. It does look slightly handicapped. But in a way it also kind of looks like a really fancy stroller. Noah seems to like it. He certainly didn't complain at all. We'll have to try it out now for walks or at stores, get a feel if it's a good match. The drawback is if we do really like it, Medicaid will not pay for it. The rehab company stated since they already gave Noah a non-returnable Kid-kart that he hates, that they refuse to purchase a new one for him (even though that purchase was nearly two years ago), Medicaid's position is that the kidcart could be modified as he grows. I asked what our options were and it basically it's to find an outside organization somewhere willing to purchase it (i.e. a church donation). And I keep thinking how am I going to swing that? Somedays you feel like you're begging for help because you don't know what else to do. Our pride and feelings of being self-sufficient were taken from us a long time ago. It's such a hard position to be in. You hate having to ask for help, you really do, it makes you feel like you're nothing. Like you're not mere inches tall as the world looks down on you, waiting to swallow you up as one of "those" that is weaker. Please continue to say a little prayer that Noah can dodge this germ that I'm carrying. And that he learns to stand up in his walker, it would be nice to see him take some steps someday soon. Love, Creative Commons License Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.