Monday, July 27, 2009

Noah's Nights

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Noah's arching during feeding has greatly improved and we haven't had to use the medication that was prescribed not even once yet. We're hoping the change in my diet, along with changing his baby food routine is helping in fixing his tummy problems. Noah however continues the "Noah Arching" which he does when he feels like it. Something that we still very much hope he will outgrow.

It appears that once again it was a little premature for me to celebrate any kind of good news on the therapy front. Centura Health has indeed blocked Children's with yet another request for therapy. I've left message after message for them, and when I finally did get a live person they said they'd look into it. They seemed very casual about it, and honestly I don't expect results. We also received a bill for $1575 today for therapy that Centura Health decided to bill Kaiser for rather than Medicaid. Kaiser of course denied it, so Centura says I owe it. Every day I wonder how possible is it that this is daily life for me? It's like living the same day over and over.

I am a little worried about Noah's skills. He used to be able to roll from his tummy to his back but no longer seems to be able to. He used to know how to do that. It used to be getting to his tummy was hard because he wouldn't bring his hand up to roll completely over and now it appears he either doesn't want to or can't do either. I continue to try to work with him the best I know how although I know that he genuinely needs physical and occupational therapy to help his brain direct the things that are not coming natural to him. I still can't get him to sit independently, and I worry that he's just falling further and further behind babies of his age.

Noah is also back to the wake up every hour or every other hour in the night. I have no idea why. Most of the time he wants to eat, other times he thinks it's happy hour, literally and wants to laugh and giggle at me at midnight, other times he's upset and who knows what's wrong. I just wish so badly that he'd sleep through the night or even for a four hour block. I have no idea if his sleeping problems are related his diagnosis or if he's just being the average typical, difficult sleeping baby. But every day is simply exhausting for me. I would just love nothing more than for Noah to sprout into an easy baby.

Stacy, Chris & Noah

Friday, July 24, 2009

Another Doctor's Visit for Noah...

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Noah went back to the doctor yet again today...

He woke up with a rash on his stomach that looked like a bad blotchy sunburn. No fever, and no signs of distress so off to the doctor we went. Of course neither my mom or Chris could get off work this time so Noah and I were on our own. I worried sick about how upset he was going to get in the car. I buckled him, gave him a piece of tissue paper to help keep him occupied and off we went. And then the most amazing thing happened. Not one single peep, not a cry, not a whimper, zero complaints the entire ride there. I kept looking in the baby mirror thinking something was wrong because he was just too quiet.

We seen yet another new doctor today, and this one seemed way more optimistic about Noah. She thinks it's too early to label Noah as having cerebral palsy and thinks we should just let time tell. For now she said she prefers to just say Noah suffered an injury due to asphyxia and thinks he may just very well make a recovery. I could tell she was genuine in her feelings and not just trying to build me up to make me feel better. She also thought that Noah's acid issue was mild and did not require a GI test and prescribed a very mild prevacid. It's a compound that she formulated just for Noah, because she knew that I'm not a fan of medicating if we don't have to. However the problem being we're having a problem finding a pharmacy to make it! The doctor feels this is temporary and may not take longer than a month to resolve.

However for the last 24 hours Noah has had ZERO arching while eating! He's been a totally different baby today, I'm not sure what Angel hugged him in the night or how many prayers from all of you that got answered, but whatever happened I hope it continues.

The doctor also had great suggestions for changing my diet, no more red sauces, (sorry pizza I will miss you dearly), go easy on the dairy, no chocolate, no coffee even if it is caffeine free, no citrus fruits, no spices, no onions (bet that one makes Chris happy...) and no garlic. I'm willing to try anything to make his little tummy happy.

We're also going backwards with the baby food. We're starting all over and doing first fruits then first veggies, no mixes, no combinations for the next few weeks. Noah also gained 2 ounces today he weighed in at 14 lbs 10 ounces.

The doctor did a strep test to determine the root of his rash, the quick test came back negative and she's really not sure about the rash, but it has improved during the day. We suspect that something irritated his skin. Although the long strep test results won't be in until Monday. But Noah has no fever and he's been the happiest today that I've seen him in maybe a month or more. It was the most beautiful great day, leaving me with the feeling that yes, indeed God is there listening.

I thought for sure that Noah would scream on the way home as he was irritated after the doctor's appointment. I strapped him in and just prayed for the best and within seconds he fell asleep, something he never does either. In fact he stayed asleep so long I had to drive around the long way home because I didn't want to disturb his peacefulness by arriving home to early.

The doctor also thinks that a therapy pillow would help Noah learn to sit, although she says they are very expensive costing between $100-200 and warned that Medicaid will not pay the costs of any therapy related tools. She also said that we need to be switching Noah's toys every three days and making different sets of toys to give him so he's motivated to reach for things, she thinks he's very much getting bored with seeing the same group of toys and that he'll forget that the old ones aren't new after three days. The problem being I don't think Noah has enough toys for me to circulate them like that.

At least I came away from this appointment feeling like someone finally had some great suggestions for us to try. Children's Hospital also called today with what is hopefully some good news about therapy. They called Medicaid on our behalf to try to figure out how to fix everything and Medicaid cannot find in their system that they ever approved Centura Health for therapy, so they cannot explain how I got a letter stating so. Which means according to Medicaid Children's hasn't been blocked from therapy for Noah, and they think that we may get approval as early as ten to twenty days. Which would be a blessing for Noah. I know the sooner we can help teach him how to reach those milestones that he'll do it!

I'm in awe of today, it's unreal really. Noah's amazing behavior and attitude, a decent doctors visit and answers on therapy. If this is the power of prayer I can't thank any of you enough, it's been such a hard week, and this is just the little window of relief I needed to keep going.

Stacy, Chris & Noah

Thursday, July 23, 2009

Noah's Neurology Appointment

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We just returned home from Noah's second neurology appointment. As with most visits they can only give you a best guess. The neurologist said she didn't detect that Noah had any problems with his left side and if anything has equal movement whether that be good or bad on both sides. He is still stiff and his tone isn't like a regular baby, but we know that. They suggested another EEG around nine months. They also suspect that Noah has an acid reflux issue and his problems eating, but they want to put him under to do a GI test and that's something that Chris and I aren't prepared to do. I don't understand that if they agree he has an acid issue why they can't find him relief without putting him under for some silly test.

Noah also weighs 14 pounds and 8 ounces. Only 4 ounces he's gained in a month, although I'm not surprised since he's not really drinking as much milk as he probably should be. And again the neurologist can't really tell us what Noah's future is going to be like, she says that will only be evident around 1-2 years of age. Chris remains beyond hopeful, his hope and love for Noah is nothing less than amazing. I have hope, but I try to guard my hope and my heart with the reality of what we all could be facing as a family.

I can't say that I really feel that the older Noah is getting that the task of being his mom gets any easier. He fights sleep beyond belief. Actually fighting sleep is an understatement. We're up until 10pm at the earliest trying to get Noah to sleep even if we've deprived him of a nap since 3 or 4 in the afternoon. And sleeping through the night is foreign to him. The screaming in the car seat is non-stop even when you know he's exhausted, I honestly think he would scream for entire hours on end.

And there is no baby book that fits a child like Noah. There is no cry it out method, there is no gently pat him on the back, because Noah isn't like everyone else. And it is hard when you feel that you can't join the rest of the families out there. Chris and I are so limited on where we can go, what we can do. And I do look at pictures of family and friends and look at the perfect families that are beyond healthy and happy. It does hurt, because that's not life for Chris and I. And it's so hard to explain to a family that doesn't know the struggles of how hard it is to care for a baby like Noah. I do know that many just simply can't understand, so they're only suggestion is go seek therapy, get over, get past it. I wish it were that simple. This is like having someone poke at your heart with a dull toothpick each day. It stings, it burns, your cry. Chris and I both cry together. We feel often times very alone in this. The rest of the world gets to keep moving and we're standing still holding God's very precious but very difficult miracle. Chris and I have these emotions that are so muddy. We're happy and sad and mad all at the same time.

We are constantly praying and hoping and begging. There are so many elements to this, from how we've had to dump just about any asset we ever had to get Noah's medical needs met the best we can, figuring out how to pay the bills, how to feed and clothe ourselves. Chris has needed a new pair of shoes for over four months, but refuses to take away from the family to buy them. We have a truck that is failing, a baby that won't stop crying and arching and that you really can't put down. And every day there is something else that goes wrong, and the mountain just keeps getting higher and higher.

Noah's therapy situation has also increasingly grown more complicated. Centura Home Health care for whatever reason put in a request to Medicaid to continue his therapy, which Medicaid approved. This blocks Children's Hospital from getting approval and we now have to resubmit a request to Medicaid for Children's something that will take another three months. And Children's Hospital also said that Medicaid may ask us for money back for services that Centura Health has not been providing this entire time. Even more great news. I know that Noah could benefit so much from therapy, but there seems to be road block after road block. I make so many calls in a day, and I'm ashamed to say I finally lost my cool and used language that is not of my character. Did it make a difference? Sadly no, I wouldn't expect that kind of behavior to. Did it make me feel better? Maybe for a few minutes, but it didn't accomplish any better results than the gather bees with honey approach.

Chris and I are so frustrated and tired, we ache for things that are not there, we pray for hard for Noah each and every day. For relief for all of us. Taking care of a baby I'm sure is hard, but taking care of a baby with challenges is beyond anything I ever imagined. Every day I tell myself it will get better the older he gets, it has to get easier. For most babies that probably is the case, they'll out grow colic, or get over sleep issues, or become better eaters, but for Noah there is no guarantee that any of that will get any better.

I find myself starting to question God, which I know one is never supposed to do. I don't know what he was thinking when he thought I'd be up for this task. I don't know that I'm doing him proud. I'm frustrated a lot of times, I'm sure Noah is bound to be picking up on my less than stellar moods, I'm mad that I changed my mind and decided to have kids, because now I'm put a soul here that is suffering and it may even get harder for him as he realizes what a cruel world this can often times be. I pray he can look past that better than I have all these years to find the beauty. I worry about his future and how unkind it may be.

My dogs are also suffering from lack of attention, I feel so bad for them, and I don't have enough arms to make them happy. My biggest one is carrying around a stuffed animal in her mouth non-stop and crying, my littlest one goes off and hides in small places and I have to go hunt her down like a cat in some corner. Even the turtle seems to glare at me with those eyes that scream you're not loving me enough. All the while my heart is breaking for them too.

I would love to just wake up someday and have someone tell me it was all a very bad dream and that everything has been restored. I love Noah so deeply, which makes my pain for him and me so very hard. I can't fix it, I can't undue the damage, I can't go backwards and change the circumstances around his birth. This is Chris and I's life for the rest of our lives.

I continue to pray today and every day that God will just get me down this road. I'm lost I need a darn roadmap! And there's no one on this road to ask for directions.

Stacy, Chris & Noah

Tuesday, July 21, 2009

Noah's First Big Storm

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Noah went to the doctor on Monday because Chris and I had been worried about his lack of appetite and his arching during bottle feedings. We suspected tummy problems. We seen a different doctor this time and she was what I'd call your typical "book doctor" she was black and white, not as friendly as I tend to gravitate towards, curt, short and to "her point". She asked strange questions that didn't relate to Noah's condition prior or otherwise. Noah hasn't gained much weight in a month, only 4 ounces which was troublesome to me, but didn't seem to worry the doctor at all.

She said she thought Noah had problems with moving his entire left side, something that no one has ever mentioned until now and something Chris and I have never noticed. He equally moves both sides, and isn't stiffer on one side than the other. So she asks me what side of damage he has, and I say both and she says "see thought so." Almost like she was trying to make an expert point. She also thinks that Noah's car seat issues stem from sensory issues which may or may not be true. I know some babies with injuries similar to Noah do have sensory problems, while I've had others tell me their babies without injuries have problems with car seats as well. Regardless Noah hates his car seat and continues to make himself sick, which required me asking my mother to accompany us to the doctor's office since Chris could not get off work to go. Someone has to work on keeping Noah as calm as possible during the drive. Something that is a very hard job. And something Chris and I are only willing to do for doctors appointments. Putting Noah in a car seat is pure torture for him.

She looked Noah over fairly quickly and labeled him as having a virus since his nose was a little stuffy at the time. She didn't really address the stomach concerns or the arching at all, and said consult the neurologist on Thursday.

It was one of those doctor visits leaving you feel like you kind of wasted a trip and didn't come home any wiser or better off then when you left. And of course it made me feel bad the entire night. I stewed way more than the doctor deserved credit for. Again she's just one opinion and I have to remind myself God has already made Noah's life amazing. And there is no one that can tell me that Noah won't walk or talk. No one knows that. And I have to keep praying that he will.

I'm hoping the neurology appointment goes better. We'll be seeing a different neurologist this time at the Broomfield location. I hope she's nice, and more friendly than this last doctor was. Noah's therapy request has also been resubmitted but again it's a waiting game with Medicaid and Children's Hospital warned me it could very well come back again denied, that it takes a long while to get approval because they do everything they can to avoid saying yes. Which is sad, because Noah could really benefit from therapy. So Chris and I continue to do as much as we can for him on our own.

Noah also experienced his very first bad hail storm of his life. The yard is a total loss, it created even more window damage for us, and although a portion of the neighbor's tree landed in our yard, it thankfully missed hitting the house. The ironic thing is Noah slept through the entire ordeal from start to finish. I ran upstairs in a panic, flipped on his light, grabbed his peaceful little body and ran down three flights of stairs to the basement all while he continued dreaming. And after it was over I just placed him back in his crib and he cuddled up like nothing ever happened. I don't understand how he can't sleep through a fireworks display out front, but can sleep so hard through one of the loudest storms we've had in years.

If you happen to think of Noah in the next couple of days can you please say a little prayer that his neurology appointment goes wonderfully and that the car ride there will be easy for him.

Stacy, Chris & Noah

Thursday, July 16, 2009

Noah's 4th of July

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It is fair to say that the Fourth of July is not Noah's favorite holiday. The loud booms and flashes of constant light outside his bedroom window frightened him terribly. And of course our neighbors didn't give up the ghost until well after 1am in the morning. Which made for a very rough night for all of us.

Chris and I also took Noah for a longer car ride and it was horrible. It was the farthest away from home he's been in a car, and unfortunately it was the worst car ride of his entire life. On the way home he got himself so upset that he threw up all over himself and in addition sprayed the backseat of the car with his vomit. We had no idea that he had thrown up until we got home and seen him covered in it. We didn't hear him choking so and so far there are no signs that he aspirated it into his lungs. Chris and I have both agreed it's just much to soon for trips that are not just a quick trip to the grocery store. Noah just can't handle it yet and we can't risk his safety if he's going to get that upset in the car. Chris and I are very much worried about how we're going to get him to his neurology appointment later this month since it's a bigger car ride for Noah. He doesn't cry himself to sleep, he only grows more agitated until he makes himself sick. Sadly I wish that Children's Hospital could do house calls.

Noah has also made some great accomplishments this week. He is now trying to get his hands to his mouth. He's successful about half the time, but we're amazed that he's making the effort all on his own. He's also attempting to reach for a plush elephant toy and bring it to his mouth. He gets it there only occasionally, but he keeps trying. We're beyond happy that he's trying. Noah is still arching which is becoming harder on me the heavier he gets. I don't know if there is as cure for that. I feel bad for him, I don't think he knows how to stop, even with my guidance. He arches out of sitting positions, arches still when I pick him up out of his crib and especially when he's mad.

We're still without therapy as we received notice today that Medicaid has denied therapy. They state that Children's Hospital did not include a diagnosis code and we were therefore denied. The letter indicates I have twenty days to appeal in which case a hearing must be held before and Administrative Law Judge. I shouldn't be surprised really, this whole entire process from the beginning has gone like this. I wonder is it like this for all families or do I just have this target on my back that says get this family they don't have enough stress as it is?

We're also going to lose our There with Care program soon as we are nearing our discharge from the program. It's been a blessing having food and diapers, and baby items delivered all these months to help us. And I haven't heard from our caseworker through Butterfly for months, she's always a no show to appointments, never returns calls, so there's no help from any direction. And I find myself navigating the unknown, apparently very unsuccessfully. I keep praying that it's going to get easier, but it's not. Next week is Noah's neurology appointment and who knows what Medicaid is going to do with that. I don't trust anything anymore. I feel like I'm constantly digging us out of holes, making phone calls and crying in my beer. Honestly I feel like I'm breaking down. I'm just exhausted I don't know how they can expect that one wouldn't be. Maybe they hope that is what happens, that you get so discouraged that you just put your tail between your legs and go away. I wish someday this seemingly permanent rain cloud would just let some sun in.

I've attached some pictures of Noah on his first unahppy 4th of July...

Stacy, Chris & Noah

Friday, July 3, 2009

Noah's Benefit Concert

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Noah's Benefit Concert was simply amazing. A year ago I never imagined that our lives would be filled with so many people who loved us. My sweet dear friends, Heather and Joey put so much hard work and love into the concert. They designed a very special scrapbook for signatures, pictures and memories of the event. So many people donated their talents and time. So many beautiful things that people gave for the silent auction. The most amazing jewelry from a very special friend who lives out of state just for the auction. And businesses like Outback and The Wave also contributed items for the silent auction. There were cookies, goodies and sweets, with prayers for Noah.

In all honesty I probably spent much of the night quietly crying with this overwhelming feeling of love. The music was breath-taking and so inspirational. Noah had the best time. He remained pretty delightful the entire evening from about 6:30pm to 9:30pm with only some mild squawking because he was hungry and I forgot and extra bottle. So his great dad rushed home in the middle of the concert to save the day, so the star of the show would be happy. It was so nice to put faces with the names that have been so loving and encouraging. It was the most wonderful night. The two music groups for Noah were super incredible. The members of WIP were so kind and their music was so much fun. And Megan Isaacson, is a voice from heaven. My sweet friend Heather also lending her vocal talents to assist Megan. It was such a special day. Megan Isaacson said it all to well, sometimes there are no words, but it makes the world of difference when some is just holding your hand through it all. You all are holding my hands and wrapping us in loving, embracing hugs. We will forever and always be so very thankful for all of you that helped us so very much. We've had many requests to be able to send a donation from those that were unable to attend Noah's benefit concert so a special account designed for all of Noah's uninsured medical needs has been established.

We have also set up a new website so that donations can also be made directly online. We'll still be maintaining his CaringBridge website as well because we love that everyone can sign his guestbook and we plan to order a book eventually of all of the postings. The new site allows for more pictures, video, and information, and an option to donate directly to Noah's account. Checks can now also be made out in Noah's name. Donations can be made in person at any Firstbank of Colorado location by giving with the following information:

Noah Warden
Custodian: Stacy Warden

There are no words to tell you how much you've made a difference in Noah's life. There are so many uninsured medical expenses even on Medicaid ranging from therapeutic toys and equipment, to medical procedures and treatment that are not covered. In an attempt to make Noah's journey more accessible there is no longer a password required for entry on Caringbridge and again you can visit Noah on either site. The only difference being that donations can be made directly to Noah on the new site with additional pictures and video of

Noah. Please check in on Noah at either:

Thank you all so very much for helping Noah. God bless all of you, I could never truly express what this all has meant to us.

With love,
Stacy, Chris & Noah