Wednesday, September 30, 2009

Noah Hunts Nectar

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Although Noah is cutting his bottom two teeth, I think he's been remarkably happy considering. He'll have boughts of a different cry here and there but it never lasts more than a few minutes, just enough to tell me that he's mildly annoyed. Noah has also enjoyed the wind today, he has a fascination with trees and leaves. He loves to just watch the trees blow in the wind. It's very peaceful for him, he watches with such awe like the trees are whispering to him and he's listening to every word. I love to watch him learn about life. There really is something to watching the world through a child's eyes. He's brought my attention back to things I wouldn't ordinarily pay any attention to. The way a bee dances around a flower before gently buzzing in delight, or watching an ant work so very hard to carry off an oversized leaf, or even a drip of morning dew on a blade of grass and how it clings so ever tight. Things I notice only because he brings my attention to them.

Today Noah had physical therapy with his therapist Beth. He loves the platform swing so very much. I think it has to be his all time favorite thing to do. We're still hopeful that we'll be able to get a platform swing for Noah with some help from the organization called two angels. It's two parents who founded the organization after the loss of their two precious daughters Allyson and Rachel both at the age of five from a rare form of Muscular Dystrophy called Nemaline Myopathy. My therapist warned me about the emotional effect that their brochure would have on me, but I don't think I really prepared myself for how much it hit my heart. I cried gently not to wake Noah or to allow Chris to notice one evening while reading it. The idea of preparing yourself for the loss of your child is horrendous. And it made me remember all too well the thought of us having to make a decision to let Noah go and trying to decide on a day when I thought I strong enough to say this is the day when I'd give up and let God take him home.

I don't know yet whether two angels will be able to help us, when I wrote them they indicated that their funding for the year had almost run out, but I'm hopeful that maybe if they cannot help us this year that they will keep our application on file for next year. It would be so wonderful to have that swing for Noah and I know it would help him tremendously at home.

Noah and I went on a nectar search today. His occupational therapist said we needed to find nectar for Noah's first go with the Nuby cup because it is thicker than juice. I didn't quite have the success I was hoping for. Sunflower carries organic nectar in jars, but when you shake the bottle it seems the same consistency as juice to me. I tried Safeway who carries Kern nectar in cans, but when you shake them it seems no thicker really than juice as well, not to mention it has a lot of added things I'm not sure Noah should be consuming just yet, if at all. Safeway does have Apricot nectar in a large can and when I shook it I think it sounded thicker than juice. And Noah has had apricots already and although it's not organic everything in the Safeway brand seems to be something he could have. I also considered the Naked drinks they have a mango drink that might work that is the consistency of a smoothie which I think is what we are after. I also found agave nectar but I think agave may be too similar to honey and I know you're not suppose to give babies honey until a certain age, although I don't know what age that is. To say the least I was overwhelmingly confused with trying to make the best choice so we came home with no nectar of any kind. I just don't know what to do or what would be best for Noah.

Noah has also learned to rollover voluntarily on a soft surface like the bed or the couch. He finally is willing to explore going from back to tummy. He gets stuck sometimes but he can get his arm up from underneath himself without help. He cannot do this on the floor however, maybe because the surface is too hard and doesn't allow him the give he needs to push through the movement. Nonetheless, I'm amazed that he can do it at all. Or even wants to try. He's been avoiding tummy time for a long while, to see him making efforts again is wonderful.

Tomorrow is Noah's 9 month well-being baby check-up. I'm hoping he weighs at least 16 lbs. He's so long, but still looks pretty lean. And of course I always feel like I'm going to the house of germs. Even though they have a well and sick side, it's still the same room. And we're fast approaching the season where I'm going to have to pick and chose the safe places for Noah to be in public to avoid big illnesses for him.

Please continue to keep all those special children in your thoughts and prayers.

Stacy, Chris & Noah

Monday, September 28, 2009

Noah's Good Friday

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Sure enough just when we change Noah's therapy schedule he performs beautifully for his Friday therapist, Nikki. He probably felt sorry for me since I've been telling him the last few days I thought we'd really miss her. We practiced weight bearing activities for Noah He's doing better and is really trying. He also played with Kooshling balls that he thought were wonderful. I used to have those years ago, I'm not sure I even saved them, wish I had since he enjoyed them so much. I'm sure the dogs would also enjoy them just as much.

We got to meet another little boy that faces similar challenges as Noah named Jayden. Noah really liked watching and studying him. Jayden was so cute and has soft curly hair and the most angelic little face that makes you look right past anything that he might not physically be able to do. Or maybe I no longer see these precious special children for what they cannot do, but for what beautiful souls lie in each one of them. I look past the physical and see such sweetness in their eyes.

Today was Noah's occupational therapy. We only have one more therapy session that is Medicaid approved. If Medicaid does not approve more by next week then we'll have to take a break from occupational therapy until the approval goes through. I'd like to be optimistic and say it will happen by next week, but being the realist that I am I know that it more than likely will not happen that way. I expect that we'll have to stop our occupational therapy for a few weeks or even up to a month until we hear yes from Medicaid or longer if they happen to come back and say no for whatever reason. I wish the system wasn't like this. It should be easier than this, but it isn't. At least Noah will be able to continue on with his physical therapy in the meantime, although I love our weekly sessions with his occupational therapist, Julie. I feel like we're at a point where we are making progress, even if it's slow, Noah is responding to her and we're both learning a lot of wonderful skills from her. And if we take a break I'm sure our 11am time slot will get filled by someone else and I'll have to change Noah's routine again.

Next week we plan to try to introduce Noah to drinking out a cup. We're trying a product called Nuby that hopefully will allow Noah to transition from bottle drinking to drinking out of a cup or sippee cup. Noah still cannot hold a cup with both hands, or if he can he's not sharing that information with me yet. He won't hold his own biscuits, or popsicles, or anything really. He'll swat at his spoon during feeding but that's the best it gets for right now. I'm nervous about transitioning Noah to solid foods or drinking out of glasses. I don't think if Noah had been born without a hypoxic-ischemic injury that I would be as scared as I am now about moving forward. I try not to live in moments of fear, but I don't want us to go backwards and for me to go to fast and make Noah sick. Aspiration is still a concern, choking and gagging very much possibilities.

Noah's two bottom teeth are clearly visible today, and he's been somewhat agitated during bottle feedings and crying. Noah can't have tylenol like other babies, it never agreed with me so we're not sure if he's allergic too, and not all drugs are suitable for babies that have brain injuries. Hence why vaccinations are not possible for Noah. There are also many foods that we'll have to watch for Noah's consumption. Many people may not realize that artificial food colorings could have consequences for Noah that may differ from others. Red 40, Blue 1, Yellow 5 and Yellow 11, all have effects on the brain that Noah may be even more sensitive too. And you can't imagine how many foods contain those artificial dyes. That means no Kraft Macaroni and cheese, that means icings in cakes and sodas, popsicles, ice cream, chips, cereals, salad dressing, It's even sprayed on fruit to give them more appealing color and can even be found in shampoos, lotion and conditioners. These dyes are even in medicines and vaccinations Effects could range from hyperactivity, anger, rage, irritability, memory disturbances, violent behaviors and abnormal stages of excitement and abnormal cell growth in the brain. And shopping for things that don't contain those dyes is going to be more expensive because it forces you to buy almost everything organic and natural. It's already hard to hunt out special popsicles for Noah, special baby foods that I have to reach each label for, and if he learns to eat like the rest of us do, that will ultimately change how our family shops for groceries and what our diet is like. And not to put the horse before the wagon, but financially it will be one more thing we are going to have to consider with Noah.

Noah's personality keeps sprouting by the day. He's growing into one of the most intriguing human beings I've ever met. I want to capture that grin he gives me in the morning and burn it forever in my memory hoping to keep it just as fresh as it is today as it will be when he's a grown man. The tender sound of his cute giggle as I nuzzle his soft neck, the way he puckers his mouth when someone else other than me wants to love on him, or the way his ocean blue eyes light up every dark corner of my day. Noah, when you are old enough read and understand your caringbridge book , I want you to know that you are the very best thing I've ever done with my life. There's nothing more that I could ever do better, than you.

Stacy, Chris & Noah

Thursday, September 24, 2009

Noah's Toys Bite the Dust

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Noah detected that the sun came out today and I could tell he was itching for a ride in his stroller. So off to Target we went to just wander. Noah doesn't particularly like his stroller hood down, so even when we're indoors he has to have it up or he screams. He must feel safer that way like he's in his own little cave.

We toured the store a few times and then ran across a really nice lady with a 10 month old little girl. We compared regular baby things, she said her baby was slow to sit and gave me tips on how to get Noah to sit, I told her he had special needs and that it might be a long time and so she looked at him intently after I told her, and said nope, he's going to be fine. We both had a small conversation just about babies in general, shared a smile, and went in different boy/girl toy directions.

Noah has also been become very aware of food, he now wants to eat lunch with me too, he roots with little monkey sounds until I give in. He also started to bite his spoon today which is excellent. We want him to learn to bite and chew.

The dogs have also made their first Noah toy casualty. It's so hard to supervise them and Noah at the same time. So unfortunately I found some of Noah's toys out in the yard dead on arrival chewed up and soaked. And they were really nice toys too, I had prefered they had taken something that Noah really didn't like to play with, but I suppose everyone loves the same toys in this house. Maybe I should put Rody up higher... I'm worried.

Noah's also been watching his Einstein videos that my mom bought him. I'm so thankful that she did because he intently watches them during feedings. I pray it helps him with his speech and learning.

Thank you to all those that continue to leave supporting and sweet messages for Noah on his caringbridge guestbook, it will mean so much to him to read someday. All the positive always outweighs the negative. And I make a conscious effort to be happy each and every day to be present in the moment for Noah's sake. Although I may write about our difficult moments, our hardships, or pain it never means that I'm not thankful for each and every moment that I share with Noah. It has been my goal to share what this type of journey is like with those unfamiliar with it, those who wish to know how the small fragile little soul they fell in love with all those months ago is progressing, and to always remember that miracles are possible.

I've also attached links to some of the other families that we've connected with that have special needs children on Noah's blog site under "Noah's friends". I welcome those that have an opportunity to read their stories. The courage, strength, love and hope can often move you to tears.

"What lies behind us and What lies before us are tiny matters compared to what lies within us"

Stacy, Chris & Noah

Wednesday, September 23, 2009

Noah the Race Car Driver

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My new bedtime racing outfit

Grandma said she'd buy me my first car...

Wait do I have enough sponsors on my suit?

Ready to race! I'm a WINNER!

See you at the finish line!

Noah Getting Ready for Winter

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I'm blending you don't see me... my name is Noah and I'm the BLEND MASTER

Seriously this goes with my eyes!

Puppy Smiles

Let me think about this do I look cute?

Noah in his Belly Band

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Noah did beautifully in therapy today. Everyday I think Noah makes improvements. He played on the swing and tried on his belly band for the first time today. He was all smiles and was so happy the entire time. His therapist and I discussed today just having Noah with one physical therapist rather than the two he sees now. For whatever reason Noah has been particularly fussy on Fridays with his therapist Nikki. And she is truly wonderful. She sings him gentle songs, lets him even grab her long hair without ever complaining, and she offers Noah a million toys and things to make him happy, but he has none of it. At first we were thinking maybe Noah just had a problem with visually seeing me, but he doesn't do this for the other two therapists he has. So we've collectively decided that Noah will just see Beth for both of his weekly physical therapy sessions. Hopefully we'll still get to say hello to Nikki here and there, she's such a sweet person who genuinely cares about Noah and has become like extended family.

I feel so comfortable with Noah's therapists. They are an incredible team, I love how they all come together for him. They pool their ideas and thoughts, to find the very best treatment options for Noah. They really care about him, and not just as a patient, these people really love their jobs, and love these children. Noah's therapist also gave me information on an organization that might be able to help us get the platform swing that we so very much want to install in the basement for Noah's therapy. It was so nice to be pointed in a direction.

We also got information on a equipment clinic that Children's Hospital is doing in November. It's on a Saturday and it's in Glendale, so I'm not sure if we'll be able to make it, but I'm so glad that his therapists offer me every piece of information that they can. I'm trying to be one big sponge and soak up every single ounce of information and advice they offer. Noah also sat by himself for a bit on the swing unassisted, every week he does something just amazing. I'd love just to cry tears of joy sometimes and if I didn't have an audience at therapy I'd probably do just that. Noah brings me to my knees with his smallest of achievements. This sweet little baby has no idea how much he touches my heart. Noah is the most special person I've ever met in my life. I don't know that he recognizes his small successes, but I try to make sure he knows that he's doing a beautiful job at everything he does.

As odd as it sounds it is often very comforting to go to therapy, to see other parents with kids with special needs, often times we don't speak but our expressions are the same, our eyes meet and we connect without a spoken word. I remember once our therapist Beth telling me once when I was apologizing I think for Noah and I having a bad day and she said I didn't have to apologize because I was amongst those that understood. It was so very comforting of her to say.

I remember so vividly someone telling us that we'd be better off if Noah had not survived. I think about that often how someone could be so bold to say such a thing. Yet I shouldn't be shocked these days at what some say. Chris and I have gotten a variety of statements since Noah has been born, sometimes I think people mean well they just don't think about what they're saying before the words spew out of their mouths and the damage has been done.

I keep thinking about those mothers that I see and know that have children that face harder challenges than Noah. The children that cannot track, that have seizures, GI tubes, that are completely paralyzed. I think it's important to remember for everyone that there is always someone that has it worse than you do. We often complain about things we shouldn't. In the big scheme of things there are a lot of things that simply do not matter. The mother that has to get up at two in the morning because her child is running at 105 temperature, is having seizures and she's trying desperately to suck the secretions from her child's lungs with a machine that is no longer working, the young man that is burned beyond recognition and has no use of his crumbled hands, or the woman dying of heart failure and will not live to see another Christmas. They all have the right to complain yet they rarely do.

I want to teach Noah not to sweat the small stuff. You can never change the way someone thinks, only the way you think. I will have to teach Noah to have thicker skin, not to fall prey to someone's wicked words or unkind glances. I have to teach him to be strong, to find purpose in each day without using his disadvantages as an excuse not to be all that he can be, and to share his inspiring message with the world.

I've attached some pictures of Noah in his belly band on the swing at therapy. He was being such a little show off today.

Stacy, Chris & Noah

Tuesday, September 22, 2009

Noah's 9 Months Old

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Noah is now 9 months old. Noah still isn't doing things that most 9 month olds can do. He still cannot sit, cannot roll, cannot get his hands to his mouth with toys and still struggles to even grasp a toy. Yet Noah's smile and laughter seems to make up for any thing that he lacks physically. He grows happier by the day, and I'm so very glad that I feel like he really wants to be here, our little fighter. And even though every day is filled with a new obstacle, something that is always difficult or even painful, I know that God continues to hold Noah in his hands.
Noah was finally able to be in a regular snugglie. His head control has improved enough that he can now be in one without his head bobbing forward or backward. That in itself is a huge improvement. Noah also had another first today. He had mashed potatoes of the first time. I was so nervous that he wouldn't be able to swallow them and that he'd gag and choke, but he did great, just like he knew exactly what to do.
I am beyond proud of Noah. He has come so far in these 9 months. I'm so in love with this little person. He teaches me something every single day. His eyes filled with God's love staring at me every morning, with an unspoken, "I'm glad to be here mommy". I feel so very blessed that God trusted me to care for his child. In the beginning you question what did I do wrong to deserve this heartache and pain? But it's not about what I did wrong or right, this was not punishment, but rather a reward. God graced me with just that one wish. He let Noah stay. Even though I think God had already made arrangements for Noah's purpose that December day filled with the promise in a rainbow, I'm glad he heard my pleas for this beautiful little life that I get to be with each day.

My life is better because Noah is in it. I'm so thankful for him. And I remain in awe that Noah remains still loved by so many after all these months. You have not forgotten him, you remember his miracle. He reminds all of us that God is always there. Thank you for continuing to support our family, for still remaining connected to our family and Noah's journey.

Stacy, Chris & Noah

Sunday, September 20, 2009

Noah's Speech Evaluation

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Today was Noah's speech evaluation. I'm so glad that we did it on a Saturday so that way Chris could have a glimpse of the facility and see and hear first hand what a therapist had to say. It went well, Noah has some really strong points, he flirts, he babbles, he can make the sound of M, A and B. She says that he is age appropriate in his socialization. Which are all really great. Yet Noah does have some areas that are a little concerning. His expressions and mouth movements are those of a three to six month old, although that doesn't necessarily mean he won't catch up in the talking department. We went over techniques that we need to be implementing at home. More reading of books, more educational dance, learning DVD's for Noah to watch. Introducing simple sign language for words like "done" and "more."

Of course the therapists try to feel you out, to see how much you can take in. How much you're prepared to hear at the time. How much of the "bad" you can handle. I told her again nothing she could tell me would be so crushing that I couldn't hear it. So she brought out devices that Noah may or may not need in the future so I could be aware that they do exist should he need them. Computerized devices that make sentences, some that have pictures that he could push to tell us his needs and wants, some gadgets that attach to wheelchairs if need be. Medicaid will only pay for a speech device once every five years so we'll have to wait to see what Noah needs since they won't let us order multiple devices should we think he needs a certain kind and then happens to need something different. I'm not sure if Noah will need anything like that. I'm hopeful that he'll talk. He has his own language now, so I hope that he'll learn to speak.

We really won't know fully until Noah is around three years old what his speech is going to do. Speech might be complicated for him since motor skills are difficult for him. The therapist said she didn't think Noah would benefit at this time from adding another day of therapy to his already busy schedule. She said one hour a week isn't going to improve things at this time, and that speech is something Chris will need to work on daily with him at home. They'll re-evaluate him when he's a year old and then probably again in March to see how he's progressing. They recommended we enroll in a special class that Children's Hospital has called the HANA program. It's like a six to eight week class once a week for a couple of hours and they teach parents how to become basically a speech therapist for their own child. She also recommended after sick season is over that in the late spring or early summer taking Noah to free reading library children's clinics where they put on puppet shows and read to children.

She also thought Noah didn't know his own name yet, which she said wasn't a great thing, but he might who knows. I've told him "no arching" for so long that maybe he's confused with "Noah". I still think he knows his name maybe he just wasn't showing off all of his skills. He likes to keep some things a mystery I think. Even sometimes when he thinks I'm not looking he'll play different. I've seen him come to midline and grab something, which he rarely does for me or for a therapist, when he thinks my back is turned. He also makes more attempts to reach for things when he thinks I'm not there or watching. Maybe he knows that I'll help him get things more if I'm around. He is very smart. So I know that he's thinking very hard on things. Even when he's dosing in and out of sleep he'll bring both hands up open handed to help hold his bottle. During the day he's lazy about it, and wants me to hold it for him and if he does decide he'll assist he usually goes about it close fisted.

I'm still very anxious to get the tumble form seat ordered from Medicaid. It's going to help us play and do therapy so much better at home. I pray Medicaid doesn't stall with helping us get it. Chris got to see it for the first time at the speech evaluation and while he thinks it's a great thing, he doesn't understand why it's so expensive.

I still have such hopes that Noah is going to do all the impossible things. He's already come so far, he's going to get there, I'm determined to do everything in my power to help him get there. He's so determined and I love the strong will that he has. I purchased Noah some biscuits today to take to therapy for practice. I was comforted that the box said for babies ten months and up. That means at Noah's eight months he's doing okay I think for his first try at a biscuit.

Noah's been sweating a lot in the night lately, and the house hasn't been that hot. His sheets are very wet when I pick him up and it feels like he's been sweating from his back, and usually he sweats from his head. I can see both bottom teeth budding. Nothing white, but you can clearly tell exactly where each one will go. I don't know how much longer it will be until the white comes up. Maybe that's been part of his discomfort and sweating at night. Although I can't say that Noah's really complaining that much. He hasn't been fussy at all, so I kind of feel like teeth so far have been a non-event for him. Maybe that will change when they finally break through the gum line. In a way I'm really excited for Noah to get teeth and then in another way I kind of wish he wouldn't because I've fallen so deeply in love with his soft tender smile just the way it is.

Stacy, Chris & Noah

Friday, September 18, 2009

Noah Rolls Away...

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Today I've been very frustrated with navigating things that are unfamiliar to me. I'm clearly out of my comfort zone, out of my element of everything I once knew and learned. Having Noah come along almost seemed to erase the life I used to know in every single way. I feel like I have to reinvent everything. How I look at things, how I feel about things, how I spend money, the list is really endless.

I got a list of websites today from Noah's therapists that are companies that we need to work with to get Noah therapy supplies and equipment. I posted all the sites on Noah's blog site for those wishing to know what families like us face. And mind you the costs never go away. There will always be something that kids with special needs need all of the time. Who would have even thought that they make special clothing even for children with sensory problems. I'm left with my hands holding my face, overwhelmed with a sense of exhaustion and a feeling like I'm carrying a load that is beyond my capabilities. And now I'm starting to feel like I'm robbing Peter to pay Paul every month.

The representative I was working with on Noah's bills at Children's Hospital is no longer there for whatever reason. And somehow all the notes regarding our outstanding account and my communications with them and Kaiser have disappeared, so I'm having to start the whole process over again with them trying to get more medical bills taken care of. So our grace period has somehow disappeared along with the person I used to speak with. I hate having this constant sick to my stomach feeling filled with fear and anxiety of what to do next. I keep trying to think outside of the box, but it feels like someone stuffed me in the silly box and sealed with it extra duct tape all the while laughing while I slowly suffocate.

Noah did make it to the Butterfly Pavilion yesterday with his great-nana. He had a wonderful time. He even made a break for it in his stroller. Yes he wheeled himself off when I turned my back to take a picture and landed in a rainforest of plants and flowers. The pathway must have had just enough slant to it that the stroller went and drove itself. He didn't complain, made no peep as we pulled him out of the plants. He was a good sport about it, but I suppose it's a good lesson that even when you think the stroller won't go anywhere, but the breaks on anyway.

Noah's becoming more fussy at therapy these days. They suspect because he knows I am there and wants to be rescued. It's not that he doesn't like therapy or that he doesn't enjoy playing, he just doesn't seem to want to play with anyone but me right now. His therapists say that's a normal baby developmental milestone and that around nine months babies tend to really want nothing but mommy. They had a double sided mirror at therapy and recommended that I may want to watch behind the mirror to see if that helps Noah participate in therapy, I tend to think it may make him panic if he doesn't sense I'm close by.

I looked into hippotherapy for Noah. I know that probably sounds a little absurd for an eight-month-old, but they say just the connection alone between a horse and a special needs child is an unspoken awareness at the earliest of ages. There is a place called the Saddle Up Foundation, that works with children with special needs. Of course this type of therapy is not something Medicaid will pay for either. Lessons are $60 each for a 45 minute session if you pay at the time of the lesson. If you prepay in a package of 4 or more then the price drops to $55. So one package of 4 lessons is $220, which is a $20 discount. $5 of every lesson is considered a tax deductible donation.

Parents like us don't want to leave any stone unturned. If there is something out there that will help, something that could bring us a cure, we'll move mountains to get there. We have to consider every possibility and every potential option that we have. I wish I could think on my feet faster. I'm so tired though from caring from Noah that I'm not as sharp as I once used to be, don't have the time to really devote to devising new good plans. So I wander through each day often aimlessly just taking things day by day.

Noah's Uncle sent this to us and I thought it was so cute and I'm sure if Noah could talk he'd give us just this type of advice:

Noah's Ark
Everything I need to know, I learned from Noah's Ark .
ONE: Don't miss the boat.
TWO: Remember that we are all in the same boat!
THREE: Plan ahead. It wasn't raining when Noah built the Ark.
FOUR: Stay fit.. When you're 60 years old, someone may ask you to do something really big. FIVE: Don't listen to critics; just get on with the job that needs to be done.
SIX: Build your future on high ground.
SEVEN: For safety's sake, travel in pairs.
EIGHT: Speed isn't always an advantage. The snails were on board with the cheetahs.
NINE: When you're stressed, float awhile.
TEN: Remember, the Ark was built by amateurs; the Titanic by professionals.
ELEVEN: No matter the storm, when you are with God, there's always a rainbow waiting.

Stacy, Chris & Noah

Wednesday, September 16, 2009

Noah's Still Dining...

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Noah has expanded upon his fine dining experience! Tonight we went to 3 Margaritas (because Noah said he really wanted to party!) Well he gave me "that" look anyway. He dinned out with his grandma and grandpa, great-nana and his daddy and I. He continues to do really well in public restaurants. Someone still has to hold him until food arrives because there's no way he'd sit in his chair for longer than giving him baby food. But I've mastered the art of eating and feeding him at the same time. It feels like we're being able to join the rest of the world little by little.

Noah didn't have his physical therapy session today. They forgot to tell me that every third Wednesday of the month, he wouldn't have therapy due to meetings. So Noah and I drove all the way there only to find out we had to come right back home. I still haven't received his new belly band that we ordered. We should have received it by now since they send it Fed Ex, so I guess I'll have to call them tomorrow. At least they were very nice and said they wouldn't re-charge me for a new belly band that fit, even though it wasn't their fault that it was too small. So I donated Noah's belly band that was too small to Children's. Maybe it can help another little baby that isn't as long as Noah is.

Noah has also decided that he much prefers it if I sing to him during his diaper changes. And he's very particular on what I can sing. It has to be either the itsy bitsy spider, twinkle, twinkle or I have to sing the alphabet with sound effects. Nothing else will do. And today he's given me quite the vocal workout with 5 diaper blowouts and 5 outfit changes. Total diaper failure today. And he laughs about it like he knows that he made a giant mess out of himself. I hate diaper failure days.

Tomorrow we're hoping to take Noah and his great-nana out to the Butterfly Pavilion. Hopefully if Noah decides he needs another gift from the gift shop he can latch on to something a little less expensive than that sparkly spider. He probably can't help himself I think it's a gene that I may have passed down to him. Find the nice things that cost way too much!

I've also tried to force myself to watch cartoons during breakfast rather than our traditional music videos on Noah's behalf. Cartoons are nothing like what they used to be when I was little. Now they are bi-lingual. That's great except I won't know what Noah is saying to me. And Sponge Bob? Is there a critter that could be more possibly ugly? Not to mention he doesn't behave very well. What ever happened to the days of sweet little cartoons like care bears?

All You Are
(by Michael Card - based on a poem by George MacDonald)
Where did you get those eyes so blue?

They're from the sky that you passed through.
Where did you get that little tear?
Did you find that it was waiting for you here?
And what about your little nose?

He knew you'd need it for the rose.
And as for your soft curly ear,
He knew there would be songs for you to hear.
How can it be that you are you?
He thought you up and so you grew.
Because you're mine, it must be true,
That he was also thinking of me too.
For all you are, and all you'll be
For everything you mean to me,
Though I don't understand,
I know you're from the Father's hand.

Stacy, Chris & Noah

Tuesday, September 15, 2009

Noah's Biscuit

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Noah tried to eat a gerber teething biscuit today in occupational therapy. His therapist wanted to see how he did with fast dissolving solids. She wasn't sure if he was a little distressed or not. Sometimes Noah has a tendency to get a little overly excited when he's eating, so I wasn't really sure if he didn't know what to do because he was so happy he got a cookie, or if he was having trouble dealing with more saliva and mushy cookie in his mouth. So it sounds like something we'll just be practicing at his therapy for a while. Food could be a hard transition and then again it might not be, we're in that stage where we're not sure yet, it's up to Noah, and I have faith that he's going to figure it out.

We also can't move into stage 3 baby food, ever. His therapist said Noah needs to know the difference between liquid food and regular texture food and to give him something that is half liquid and half chunks would make his life extremely difficult. She did say we could start to introduce things that I could mash like mash potatoes, avocado, banana and that I could even let him have a few sucks on a popsicle if it helped soothe his soon-to-be teething mouth. It's going to be a very new experience for Noah. His occupational therapist said to make sure his chin is tucked so that if he does have problems swallowing that we can handle it quickly without letting him choke or in any way cause him distress. She recommended we order that special chair for Noah that I mentioned a while back that is roughly $600. She is going to try to get Medicaid to pay at least a portion of it by saying we need it for feeding, which we do.

Unfortunately the swing, and other items Noah will be needing Medicaid will not help us with. I'm supposed to get a catalog soon of the things we need to get for Noah. I of course immediately phone Noah's daddy to say what's the plan to get all this? There are items around the house we're going to try to sell. I have a washer and dryer that I can sell, the XBOX gaming system can go... I'm sure there's other stuff in the basement that needs a new home that I could say good-bye to without getting a tremendous broken heart over. As they saying goes; Where there is a will there is a way.

Today I looked at Noah and just felt like he's going to beat every odd out there. He's trying remarkably hard. He's so driven. I admire his perseverance. He has more fight in him than I've ever had my entire life. Noah's occupational therapist I think was a little concerned how I felt about the term cerebral palsy. I know that Noah could be labeled as such, it's not crushing to me, none of it is crushing. You could label Noah anything and I'd still love him just the same, worry about him just the same, and know that he's going to be okay just the same. The road is going to be longer for Noah than others, but he's going to come away with something special because of it. He'll know from the start what it's like to work harder and feel sweet rewards. Noah won't ever be someone that takes anything for granted, like many of us do. He will be different, but in the most beautiful of ways.

I've been exceptionally tired lately, although Noah is making better attempts to sleep a little better than he used to. I think I'm mentally exhausted. I'm always thinking non-stop. Trying to think about how to improve our situation, how to get the things Noah needs, concentrating hard on Noah's therapies. My brain never shuts off. It even thinks when I'm sleeping. My dreams are often filled with strange solutions, or even beautiful things in the future. Last night I dreamt I was playing basketball with Noah who was about seven or eight. I let him hang a basketball hoop above the garage and I remember thinking how much I hated playing basketball, but how very much I loved playing it with him. In my dream Noah didn't have any disabilities. Every dream I have of him he's just like any other child. But like many other moms that I know that have children like Noah, we all dream like this. We all hate waking up from the promise that our dreams give us.

I've asked other moms how they fund therapies and things and they all say it's done through fundraisers and companies willing to sponsor. I however have no idea where one would start. Part of it is I'm not good at asking for help of any kind. It's never been my style. My genetic make-up has driven me to always find a way to provide for my needs, my families needs. Just the very thought of it is awkward for me. I'm not sure I could even get the words out to even approach a company to help Noah. What does one even say? Want a tax deduction? Contact 1-800-Love-Noah....? I have to be one of the most uneducated moms when it comes to this stuff. I understand God not giving me a rule book to life, that's fine. But when he plops me with his special miracle that needs things, he should have at least given me a mini pamphlet on tips. There are mornings that I wake up feeling like the least educated person on the planet. I haven't got a clue.

Our There with Care program is ending by October 10th. They have been such a blessing in our lives. They've helped us for so many months. We have gotten past our medical crisis, and that is when they are designed to step in. I will miss their services, but remain forever thankful that they had been there for us.

Stacy, Chris & Noah

Sunday, September 13, 2009

Noah's Rody

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We finally got Noah's Rody all blown up for him. I think he really likes him just as much as the one he plays with at therapy. He continues to reach for his little blue ears, however his balance is still difficult for him so he always winds up leaning backwards in an attempt to hold them. Rody's new home in the formal living room so the dogs don't attack him. Everyone loves Rody except Hollie and Brystal. To them he's is the ultimate blue enemy that they are dreaming about biting and deflating...
Our whole house is beginning to look like a playground. Every room is filled with therapy for Noah. Mirrors line the family room, Rody is now safely living in the formal living room, I have sensory balls in the dining room and Einstein mats and a play yard in the Master bedroom. So I figured why not complete the entire house and install that fancy swing in the basement for Noah's therapy. I found the therapy platform swings online but they are all between $200-$300. I'd really like to get one for Noah, but it's not within our means right now.
Noah's grandma Marsha and his great-nana got to go to therapy with him for the first time this week. They went to his Friday physical therapy session. They got to see Noah swing and practice his head control. He was a little fussy, but I think it was to get his way to be put on the swing. Noah is very particular about getting what he wants.
Noah also dinned out for the second time this week at the Village Inn again. I like that it is quite there, and not overly busy. That way should Noah be difficult he's not interrupting someone else's fine dinning experience or wrecking someone's anniversary or birthday dinner. This time he went with the whole family. He did wonderfully, even better than the first time. We of course still have to tote around Noah's special high chair. But at least it's light weight and it travels well.
Noah also had a recall on his stroller this week. Of course it has to be the buckle that holds the five point harness in. I wish I could afford to get in another jogging stroller that sat him up with a five point harness, but I priced them today at Babies R Us and they're a minimum of a $150. It's always difficult to buy for Noah because I have to think of if he can sit in it. Without a five point harness there's no way he can be in a stroller of any kind. Hopefully maybe next year he won't require that, and maybe he'll be able to sit up on his own and not need to be locked in. I wish that the things Noah needs would be just a little cheaper than they are. All of it just adds up very quickly.
I've attached some pictures of Noah's Rody on his blogspot website. He was up past his bedtime playing with Rody so he looks very tired. Hopefully when he's got more energy will be able to take some bright eyed pictures.
Stacy, Chris & Noah

Noah's Rody

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Noah sitting on his new blue Rody for the first time

Noah riding wild!

Noah, Daddy & Rody

Wednesday, September 9, 2009

Noah Dines Out!

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Noah dinned out for the very first time at eight months, 2 weeks and 2 days! He finally made it out to the Village Inn. At first I wasn't sure that it was going to go well, Noah started to squawk and I figured it was just a matter of time before brunch with his great grandmother would be rudely interrupted. We brought a special high chair for him, since restaurant ones can't really accommodate Noah's lack of balance, head control and arching problems. I was worried that people would be looking and wondering why Noah was acting out, and I told the waitress that I was sorry about Noah being noisy but that Noah was special.

The waitress was so nice and said with a small pause, my child is special too. She is twenty now and has down syndrome. She understood, and told me that she just figured all those years ago that she too was chosen to have a special needs child. She said when her daughter was first born a nurse told her remember she has downs but downs doesn't have her. That's how I need to think of Noah. Noah has a brain injury but his brain injury doesn't have him. He will find a way to beat it.

I asked if she had any applesauce that I could give to Noah. I didn't bring anything with me because I didn't think Noah would be hungry at all, but he definitely wanted to participate in eating. Thank goodness they had some Motts Applesauce in a little container. She totally rescued me. I didn't have a soft baby spoon so I just used my finger to dip and and feed him. He really loved it, I'm sure because it was real applesauce with real sugar. When I was feeding him with my finger I noticed that he has a bottom tooth trying to come up. I could feel it under the gums, on the lower right side. I can't see it yet, but I can feel it so teeth are very much on the horizon.

Noah did some new exercises in therapy today. He was on a giant swing with his therapist. It is the coolest swing, and if I thought I could find a way to rig my house with it, and finance such a critter I'd probably build it. Noah loved it. Two weeks ago Noah had very little head control during therapy. Now his head is so steady he can be in motion and hold it up. It sometimes still wants to fall forward but he's now able to catch his head and re-center it. His therapists think his head control has gotten tremendously better. Noah still can't sit on his own, and his balance is terrible. But he's trying super hard. The determination behind those pretty blue eyes tells me that he will get there, someday.

Noah also got to wear his belly band for the first time today, and no surprise it doesn't fit. It's too small because he's too long, so he was re-measured and I have to re-order it. Of course it's out of pocket costs again. I'm a little frustrated that it doesn't fit, but he needs it so we have to repurchase it. My mother told me a while ago of a wives tale of having a purple bowl. She said if you have a purple bowl sitting out in your house you will never be without money. Maybe I need to shine the bowl? Talk to it? Stroke it gently? Take the rotten fruit out of it so it feels better? The purple bowl is obviously a little mad at me right now. Yet it remains faithfully in the kitchen because one day I have hopes that it will provide.

Noah's also been a great sport about all the contractors and insurance agents that have been in and out of the house to repair the hail damage. In a way I'm very thankful for that horrible storm. Without it the house wouldn't have gotten a fix at all. Although it was noisy Noah did good. He flinched every time he heard a loud noise in his sleep, but never woke up. Just kept flinching. It was cute. Thankfully we're done with almost all the claims repairs, however sadly other things in the house are breaking down. Chris has exhausted all efforts to fix them himself and I keep telling him he can try and try, but it's going to come down to paying that dreaded $125 service fee.

Noah's Rody Pony arrived in the mail today, so hopefully Chris can get it blown up, so we can start therapy on it soon, I can't wait to post pictures of Noah on his new blue pony!

Stacy, Chris & Noah

Saturday, September 5, 2009

Noah Sees Butterflies

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Chris and I took Noah to the Butterfly Pavilion for our first family activity. We really wanted to go to the zoo, but we know that Noah wouldn't even make it half way there in a car seat. But the Butterfly Pavilion was wonderful. Noah loved it. He loves to be visually stimulated, he loves to learn and look. He even smiled and laughed as the caretaker of the resident tarantula showed him the giant spider in the palm of his hand. Such a little boy response. But it was wonderful to see Noah reacting in a way similar to how I think other babies might.

And then as we were leaving we had to pass the gift shop and Noah reached out and grabbed a stuffed spider hand puppet with a metallic body and then held it with two hands using all open fingers on both hands in the middle. He held it so tight he wasn't going to give it up. I wanted to almost fall to my knees and cry right there. It's the first time Noah has been able to grasp something on his own without me putting it in his hands, the first time he reached for something he wanted, the first time he clutched with both hands.

Noah wouldn't let go of his sparkly spider so the cashier ripped off the tag to ring us out, all the while Noah continued his firm grip on his new prize. I love that spider. We have to give it a name, it's very special to me, and obviously to Noah. I must never lose it, it's an incredible memory, a first for Noah.

Noah had a doctor's appointment for a re-check on his acid reflux. I really didn't come away from this appointment feeling very positive about it. I had to go over again Noah's diagnosis, his therapy and such, with a doctor that had already seen Noah. I left feeling like he's just another number to everyone. Granted I'm sure there are lots of patients that they see, but I shouldn't have to go over everything like it's the first time I've been there. I explained that Noah's reflux has gotten much better and we did not need medication and she said she wanted to see for herself and asked me to feed Noah in front of her as if to insinuate I was lying. And then said she thought Noah's regular arching was seizures and I said no, Noah arches when he's mad or tired or excited. He has lots of extension. Neurology and his therapists have both seen this type of arching and know that it's not a seizure. I feel like no one really wants to take the time to get to know Noah. To bond with him medically. In a perfect world I know. There's so much I wish I could change but can't.

I'm exhausted physically and emotionally. This can be a very lonely experience. I don't get to participate in the world like average moms do. I have to calculate every trip down to the minute, estimate how long Noah can be in the car seat, figure out how long I can hold him when he's arching without help. I can't go anywhere on a whim.

Noah's therapists also recommended that we set up an appointment for Noah to see a Rehab Specialist at Children's. He has an appointment in October, another opinion to add to our collection. They also thought that it might be beneficial to get Noah evaluated for speech therapy so more therapy is probably on the horizon. We're already up to three times weekly, so it might be something where Noah has therapy every day. I also went out an bought more recommended therapy items for Noah today. Special toys designed to help him. I wish these things were a little less expensive, but I don't even think twice about it. Buy now, figure out how to pay for it later. I have to do whatever Noah needs and if they tell me he needs it, then it is our responsibility to provide it.

Trying to balance money is hard and scary at the same time. You'd think that we'd have all of our medical bills resolved by now, but we don't. I get a new one about once a week, everyone trying to dodge the responsibility of paying this or that. Today I got another one for $680.17, Kaiser is claiming I haven't met my co-pays, but I maxed them out, Children's says they can't bill Medicaid because although I applied February 5th, my interview and acceptance wasn't until February 26th, so the farthest back Medicaid will go is December 26th. Kaiser says that because Noah didn't come home with me after birth that the same co-pays and billing rules don't apply. All these bills are for the very day he was born. There are days where all the bills come in and honestly I just want to sit in the middle of the floor, scream so loud that I force every angel off their cloud to come down and hug me and then just cry it out. I'm frustrated and exhausted by the whole process. It's the continuous cycle. The bills never end.

I'm finding that having a special needs child impacts all families financially. One parent has to stay home because the child's needs are too great creating a one family income, you still have to maintain all your current debts, and house payments, vehicle payments, all the while introducing new expenses like hospital bills, therapy equipment, therapeutic gadgets and toys. I hear other mothers concerned just like me, how to provide for their families while obtaining custom made vans for wheelchairs, and trying to get equipment that cost thousands of dollars. We're all stressed and worry about it. I am no different than they are.

There With Care came today to bring us our groceries and diapers. I don't know what we'd do without them. They have been such a blessing in our lives. Pam, our volunteer coordinator, who brings everything to us is such a sweet, beautiful lady. Her and Noah share the same birthday. Today she brought me the most breathtaking yellow mums in a basket that her and her husband bought for us. She even went out special and got us diapers since the food bank center didn't have any. I just cried. I wanted to just hug her and not let go. It meant so much to me to just know today that someone thought of us, someone cared. One person's kindness lasts a lifetime. Just another one of the many angels that has come to our rescue. Thank goodness this is all typed and not handwritten as my words would be stained with tears.

Angels lift us to our feet when our wings have trouble remembering how to fly.

I've attached some pictures of Noah's Butterfly trip on his website:

Love, Stacy, Chris & Noah

Noah Sees Butterflies

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Mom, Dad & Noah

Noah making a face at the butterfly that just went by

Nothing like a beautiful smile

Showing Noah that he can stand!

Noah observing butterflies

Enjoying the ride