Thursday, January 28, 2010

Elmo Happy

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Noah continues to make great attempts at the grocery cart. He of course is acting very typical of the average child wanting something to hold or play with in the cart that makes noise. He especially enjoys curly ribbon so I'm always trying to pass the gift wrap isles. I've even found myself making the regular $1.49 purchase of his curly ribbon to ensure his continued happiness.

Noah continues to be very attached to anything Elmo, so much so that he's now protesting with small tantrums when I shut the TV off. Which I think is a wonderful display of his ability to think like a typical baby. They almost need to have a subscription for the Elmo Club of the Month where they send you a new DVD. I think Chris and I have completely memorized all the ones that he has. But it helps keep him happy at therapy, organized during meal times so he doesn't get overly excited and more prone to choking, and he even makes great attempts to use his hands to play with toys in his highchair when he's focused on his beloved Elmo DVD's.

It's been a rough week for us routine wise. Noah has changed all his habits once again. I think it's largely due to his teeth finally coming in. He'll have days where he doesn't eat or drink as well, and then the next day he's back to his regular eating and drinking habits, nap time and bed time are no longer an easy falling asleep to the bottle. He doesn't want as many bottles as usual. At first I was worried about that, but really now that he is getting older he probably doesn't necessarily want a bottle every 3 hours like when he was smaller. It was just so much easier when he'd fall asleep to a bottle and then you could put him to bed, and now that he's decided he doesn't want that we're having to learn a whole new way to put him to bed.

I continue to progress in the ABM Therapy DVD's. I still hold true to the belief that this type of therapy has the possibility to make a difference for Noah. There is no therapy that is going to be an overnight fix for Noah, but there is hope that with lots of years of practice that I fully believe Noah will walk in some fashion. Maybe it's not going to be as graceful for him in the beginning, but I hear of children that learn to walk independently at age seven or age nine. Maybe Noah won't crawl like other children but I think we cannot rule out that he might not army crawl or find a way to scoot. I don't think that it's healthy to brand any child regardless of their disability with a "will never do" label. That's not fair to the child, and it isn't fair to the parents. No one really ever knows, but stealing our thunder, our hope, our child's possibilities isn't something that I think families like ours need. We are realistic, we're not ignorant to our children's conditions. We don't live in a fantasy-land where we know that they will be perfect one day. We know the potential outcomes bad and good without someone focusing on the textbook definitions of what the "typical child" with a particular condition is capable of doing. That completely eliminates the human spirit factor, that completely eliminates the devotion of parents, that completely eliminates our child's drive to succeed, most importantly it eliminates God's power over all of our futures. If you simply say well nothing much is expected of him or her, that creates no opportunity for growth in anyone.

Someone told me the reason the medical profession likes to give you the worst case scenario all of the time is so that you'll be pleasantly surprised if the outcome is better than projected. I think that is simply the silliest logic. Pleasantly surprised? Pleasantly surprised is if you find the IRS is refunding you lots of money, not when you realize your child is able to walk. There are no words in the English Dictionary that can even come close to touching that emotion.

Sometimes you simply wish you could have everyone walk on this side of the fence just for one day, to have profound understanding of all of it. People by nature walk in and out of each other's lives everyday for various reasons. But when you have a special needs child many flea like you have the plague. Suddenly you feel as if you and your child's existence make them more uncomfortable than they can possibly handle. Yet, even though there are many that abandoned us when we needed the most support, God sent in a whole new troop of amazing blessings from all around the world to help encourage us, lift our spirits and demonstrate love without boundaries for a little boy named Noah. That is what we draw from when our hearts are heavy and we need gentle encouragement to fight for another better tomorrow.

I received today a very typical reponse from Early Intervention in regards to a request to help us financially with things needed for Noah. It was cold and insensitive. We had applied for financial help for out of pocket costs for things we've spent to try to meet all of Noah's needs. They basicially said they're sorry if Medicaid doesn't pick up the tab, or if we can't find assistance through other programs, but that they simply feel that Noah's therapy equipment, because he's an infant, can be met by quote "simulated using another item such as a hammock or a sheet." It is the most ignorant email I think I've received in quite a long time. I'm surprised they didn't recommend I make thumb splints out of duct tape. They truly have no idea about any of this, they aren't living it, and to suggest that I simply try to make some home made therapy gadget out of a sheet? Seriously? But having doors slammed in our face isn't new to us, as many of you know that have been so diligent in caring and reading Noah's story. But there isn't anything we can do. And the sad realiziation is we're not the only family that this is happening to. There are thousands of us needing help. And there is no help for us. They tell you there is. You leave the hospital with all these cute pamphlets with instructions: "Should your baby live, feel free to contact these people for services." What services? It looks good on paper, but the help isn't there. We are on our own.

I've attached a picture of Noah celebrating the fact that I turned on his Elmo DVD. Elmo brings him so much joy.

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability."

-Lori Borgman

Stacy, Chris & Noah

Thursday, January 21, 2010

Noah Loves Sprouts

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I was able to get out this weekend with my dear close friend Heather. It was the first time I had really been away from Noah for any type of personal leisurely time since his birth. Chris watched him so that I could have a little break. It was wonderful. Heather and I had coffee and then of course our attention quickly turned to our sons who are always on our minds and we headed to Children's Palace where she helped me find some britches that would fit Noah's tiny waist. We window shopped and just chatted about all the normal small things that one would talk about in a day. It was a refreshing normal feeling, so distant from how my life is now. I blended in just like a regular person, not a mom filled with heartache. Heather always takes such tender care of me and my heart and she has the most happy, upbeat personality that always makes you smile.

We had a bit of confusion with Noah's therapy this week so he didn't go Wednesday. But we have a make up session later in the week. We got his platform swing that was on back-order that Two Angels helped get for us. Chris put it up and did a great job, but the platform swing is much smaller than what we use in therapy so it doesn't allow for us to swing forward and back. It swings much like a regular swing that you would pump with your legs. Up and down, and so I wind up holding Noah on my lap rather than allowing him to sit independently with assistance like he does at therapy. But although it isn't exactly what I had thought it was going to be like, I remain very thankful that someone even cared enough to help us. Any type of therapy equipment is near impossible for us to obtain on our own. I imagine it will work better for Noah when he is a bit older and can possibly learn to swing himself.

My mom also ordered us the Anat Baniel Method Special Needs DVD and had it sent to us. It was such a wonderful surprise and I've been watching and learning during Noah's naps. I think the method is really promising. And I'm very excited to keep my knowledge growing and my mind open to changes that the body can teach the brain. I feel most at ease when I feel like I'm constantly doing something that will improve Noah's quality of life. It helps me distance myself from all the skeptism about Noah not being able to make great advances. For in my heart and in my mind I must find a way to stay true to the belief that all things still remain possible. His miracle is not done.

This was Noah's first week of trying the new baby food, called Sprout Baby, that I ordered for him. It is absolutely fantastic. Tyler Florence from the Food network made this line of baby food, and it is really gourmet for a baby. I highly recommend it. It tastes amazing. Noah actually even ate green beans and peas, something he hasn't done since he was about seven months old. He quickly boycotted most vegetables. But the green beans and peas had this great subtle hint of mint and was very appealing. There hasn't been one that he hasn't liked yet. Although it's a little more expensive, especially because he eats 3-4 packets a day, he seems to be enjoying it a lot more.

Noah had his second therapy session with his new occupational therapist, Susan. It is going tremendously well. Noah is responding to her wonderfully, and I'm so thrilled with his responses to her. She must have that Noah magic touch. He seems to really enjoy her company, her touch, and the toys she lets him play with. And she agrees he is super close to getting those tiny little hands to his mouth. It will happen, I'm not sure when, but he is so determined, he tries and tries all day long. Eventually his brain will be able to make that little connection.

Chris and I took Noah to the store tonight, we needed just a handful of things, as we shop in little spurts when we can. This was Noah's second good attempt at the grocery cart. His body finally wanted to lean forward and he wanted to bring his head along with it. I still had to hold his head in the back because it still had the occasional tendency to go backwards and look at the ceiling, but I could feel him try to bring himself forward more than ever before tonight. A super big effort for him. He's giving it all he has.

Thank you to all those that continue to hold Noah so close in your thoughts and prayers. It means so much to our family.

Stacy, Chris & Noah

Saturday, January 16, 2010

Hoping For Noah

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Noah had another speech evaluation today. He's making some progress but remains still very different from how babies his age are starting to babble and learn words. It was during of course his nap hour, so he wasn't willing to probably show off all his skills, but he made some efforts to play with switch toys. His evaluator, Amy gave him a Elmo that blows kisses and some other stuffed toys. It was a very nice little surprise for Noah, he rode all the way home with his new treasures.

I especially dislike going to therapy on what I call my "sensitive days." Lately I've found that I'm simply too busy to cry, I don't have the time. I must keep going everyday because Noah needs me as strong and as functional as I can be. So it builds and builds until there are those days when I feel like I fight back the pain and the weight of the world. And going to therapy on those days are harder. You don't want to signal you're aching for them to tell you he'll be just fine someday. That he won't ever need a computer device to talk, that he will walk, that he will even run. But they remain guarded with their positive prognosis, and I understand that no one has a crystal ball and could ever tell me how much Noah will progress. Yet I yearn for a guarantee, reassurance in some form. I want someone to take my hand and say don't you worry another moment, he will be just fine.

I find myself unable to shut my thoughts off to rest peacefully. Although Noah is sleeping through the nights for the most part now, I don't seem to be. I've filled the void of getting up so often with racing thoughts of how to rescue our family financially, how to find the courage and the strength I need to persevere though each day, how to get all the wonderful therapy things I dream will only help Noah get stronger, to be able to turn over my uncertainty about Noah's future to God. There are days when I simply feel powerless as mother, as a person.

When I left the nest, I flew very successfully. In fact I soared. And I feel like someone came along and clipped my beautiful flying wings, and as I felt myself tumble I was unable to catch myself on any branches. I fell hard to the ground and I remain there wounded and flopping around wondering will my wings ever heal enough for me me to fly that same way again?

I've lost all security blankets that I carefully knitted for myself all these years. I hang now by a simple fragile thread. Without the kindness of others that care so deeply for Noah, he wouldn't have even half the things that we've been able to get for his therapy and recovery. My mother had now taken on the task of helping us more than she should ever have to help a grown child that once had beautiful flying wings. Without her, I would simply be lost.

Noah is mobile in all my sweetest dreams. I dream of him running very fast in and out of a train museum, I dream of him shouting mommy. I dream so vividly as if I can taste the future. But it could be such an illusion, something I want so badly that my mind tells me it's true, that it's possible. Is my mind just playing evil tricks on my heart?

I had someone tell me that the key to getting over my pain, is simply moving on and having another "perfect baby" to live through. Maybe their intentions were good, but it's really not that simple. I will forever and always wish for Noah to have a complete recovery even if Chris and I had a hundred babies.

I went grocery shopping today and was bombarded with the simple joys that I wish to experience with Noah someday. Walking hand in hand to cross the street, shouting mommy can I have that cereal, the ability to watch him eat a hot dog. There are days when I notice everything that I wonder if we'll ever get a chance to share.

"If it were not for hopes, the heart would break."

Thomas Fuller

Stacy, Chris & Noah

Thursday, January 14, 2010

Noah Loving Elmo...

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Sweet Smile
Driving my plush car

Noah on his Lamaze Tummy Gadget

Noah got a great surprise this week. A very special person in the UK found such amazing love for Noah and sent him a very special seat called the babystation. It was a dream to be able to obtain it, something I had given up on being able to get thinking it was out of reach. Each person that we have been blessed to know on our journey has played such a beautiful part in Noah's recovery. The babystation has been wonderful in allowing Noah to sit on the ground with support and play. It molds very nicely to his body. I wish they sold it here in the US, I think it would be beneficial for so many little babies.
We brought Noah's DVD player loaded with mommy's secret weapon... Elmo, to therapy yesterday. Thankfully, our physical therapist had no objections and it was the distraction that Noah needed that day to focus in therapy. Elmo is Noah's all time favorite right now and I'm so thankful that his grandma supplied him with a portable DVD player and some videos. It has made life easier in the last few weeks. Noah met his new occupational therapist today. Her name is Susan, and I really like her gentle ways. More importantly though, Noah responded wonderfully to her. She had such a loving way of holding him, much like how is own grandma fusses about him and holds him. I think he found it familiar. I thought we'd need an Elmo distraction today so I came prepared and armed with a DVD, but he was way more interested in Susan and some great pom poms she gave him. I must acquire some for home. I knew Noah loved curly Christmas bows, so of course he'd love pom poms, which never crossed my mind before.
He even was his typical social self today, flirting with whomever would pay him a glance. I detect Susan is going to be in Noah's corner all the way, she never once said Noah won't or can't do something. And I continue to always love it when I hear "It's Noah time", meaning he'll do things when he's ready as opposed to he never will. Her energy feels very encouraging and positive and I think Noah and I will both benefit from it.
I've noticed lately him making some exceptionally sour faces at me during meal times, so I took it upon myself to try his various baby food flavors only to find that they taste like vinegar and tart apples. I wouldn't want to eat it, so I'm not surprised he's not happy about it. I ordered a new line of food that I hope arrives soon. You can only purchase it at two Whole Foods locations here, and they are both quite a distance from us. The line is called Sprout Baby, and is all organic and seems to have gotten good taste reviews from moms and babies. For Christmas I asked Chris for a food processor so I could make Noah's food, but it has been tricky because Noah has to have exactly the right consistency to be able to eat it, and being able to achieve his special types of textures has proven to be a bit difficult.
Noah had his first taste of squished avocado today. He did very well with it. I could tell he thought it was bland. I added a teaspoon if even that, or ranch dressing and then he thought it was incredible. I don't think it altered the taste much from what I could tell, I think he just appreciated watching me add something to it, like I somehow made it all gourmet just by adding dressing. He did really good with the consistency since it was a little thicker than he's used to, he only gagged once and it was while he was trying to talk and swallow at the same time, but he recovered well. He's also decided he's picky about the pediasure. He really isn't into the chocolate flavor as much as he is the vanilla and the verdict is still out on the bannana and the strawberry I'm not sure he knows what to make of it. Right now I think he is wondering why it's not warmed like his milk is. And I haven't chilled it because he seems to really look at me with I'm not going to drink cold anything unless it's water. He's very particular about his likes. Water must be cold, milk must be warm, and pediasure must be room temperature or he won't even attempt it. And learning all this isn't done in a day. There are some weeks where it's trial and error for me all day long.
Noah also has started verbalizing his favorite word a lot more lately which is A-Boo. I don't know what it means yet, if he simply shortened peek-a-boo, or if it is just his own word, but he will repeat it back to you if you tell it to him. I of course am still holding out for those precious words... mama. Everyday I see a new little glimmer of Noah trying something he couldn't do the day before, even if it is so ever slight, it's progress. And he is so very smart, I can see him thinking so very hard to get his way.
Tonight we lost power for a few hours right during dinner time. I of course called my mother upset that I couldn't cook any of us dinner or even navigate in the dark. And as most great parents, they came to my rescue brining us a homemade meal, and a battery lamp. So Noah had his first indoor camping experience. He kept looking at us and smiling like we were playing a game in the dark.
Another mommy with a special needs baby shared this quote with me today and I thought it was wonderful:"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ♥ ~Agatha Christie
I also wanted to share a link that was sent to us by email that was a very inspirational video:
When I watched the video I thought of Chris and Noah's relationship. Chris is beyond devoted to Noah. Noah is his entire world just as he is mine. Chris will forever and always do anything and everything that Noah needs to make him happy his entire life. Their bond is so strong and I admire how much Chris loves his little Noah. Chris only sees what Noah can do, not what he can't.
Stacy, Chris & Noah

Sunday, January 10, 2010

Noah's First Haircut

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Noah's Haircut Certificate

Getting ready for my haircut

Making sure my sides are even...

I think I look really good...

Wow Elmo is on DVD while I'm getting my haircut...

Still watching Elmo...

My hair before it was cut...

Getting the back cut...
Waiting for my haircut

Today was Noah's first haircut. We scheduled him his own appointment at Fantastic Sams for early this morning. He of course had to sit in my lap because he hasn't learned to sit indpendently yet, and we had to bring his mini-television so he was able to watch his Elmo DVD while getting his first trim. Elmo is Noah's biggest interest right now.
Noah especially liked the plastic blue and while snowflakes they had hanging from the ceiling. He taked to them in his own language and was very interested in them the entire time. He was really a good sport about his first haircut, he really didn't appreciate the sides so much or the top being done, but overall he did great. I thought for sure he'd look very different, but he still looks the same, just a little trimmed, but still has kept his traditional cow-lick in the back. So he'll still have that great hair that comes up in the back. It's really his signature trademark.
We saved his first haircut clippings, and he got his own first haircut certificate. So very precious since I love to keep every single memory documented as best as I can. I've attached the pictures of Noah's first hair cut. He is simply as handsome as ever.
Stacy, Chris & Noah

Wednesday, January 6, 2010

Noah Gets Chocolate!

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Noah's top two teeth have started to cut through the gums today. A possible reason for his potential lack of concentration at therapy today. Not quite the meltdown that we had Monday, but it was a different kind of set of tears today. Noah also had chocolate for the first time today. His well-being baby check up was yesterday and although Noah is gaining weight it is still slow, so they decided to add Pediasure to his diet along with the duocal to add even more extra calories. And he had his first chocolate Pediasure. He only drank half, but he liked it very much. You'd think between all the supplements and the way he eats he'd be a chunky monkey, but he finds a way to burn all those calories. He is getting bigger however because I think his old belly band is officially retired as of today. Hopefully the new one will come in a few days. Noah's current occupational therapist also passed the torch today to a new therapist by the name of Susan. So we're switching therapists, days and time. I detect there is more to switching therapists other than Noah needing a new time to attend, but I don't know what it is. My hopes are that information regarding Noah isn't being withheld and there are not concerns that are not being addressed with me. I'm always trying to read into everyone's intentions, it comes with the territory of making sure I'm doing the very best I can by Noah and meeting all of his needs. It's especially hard when I get conflicting opinions about what is in his best interests. The doctor thinks he needs speech therapy, the speech therapist thinks we need just to watch progress, occupational therapy thinks a swallow study would benefit Noah, the doctor doesn't seem to think so at this time. It's like trying to figure out which side of the coin I should toss. Who's right, who's wrong? I'm at the mercy of various professional opinions and have no idea what to think or what directions I need to push for. I hope the therapist switch is a good match for Noah, someone that agrees with him. It sounds like we'll only be doing therapy three times weekly rather than four, I'm not sure how I really feel about a decrease in time. It's so hard to know how to best advocate for Noah. I want nothing but the best I can get for him. I would love nothing more if he had the opportunity to be just a regular baby that got to sleep, eat, crawl around and play without having to schedule therapies regular doctor visits. But we don't have that luxury, the hand that was dealt to us doesn't provide for that. And I'd be lying if I said it wasn't an exhausting process at times.

I just have to continue to pray I know what directions to follow that will most benefit Noah. I often wish there was a little birdie on my shoulder telling me which road to take next. But again there will never be any roadmaps on this journey. And I hate the feeling of flying by the seat of my pants.

Stacy, Chris & Noah

Monday, January 4, 2010

Noah Protests Therapy

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had a feeling when I woke up this morning that Noah's occupational therapy session wasn't going to go well. It fell right at his prime nap time and I knew he'd have really no part of anything.

There was an intern with Noah's therapist today. I thought maybe at first a new face would keep him interested. My first impression of the intern was really that of a guy that was on vacation to Colorado from Philadelphia while getting degree credits. I don't know that I really detected a huge amount of interest in making a difference in someone's life. Maybe I seen only the blissfulness of youth, so detached from the pain that lies beneath families like ours. Or maybe it stems from the intern feelings I acquired when Noah was in the NICU and they visited him like a sad soul ready to leave the planet and not worth anything other than witnessing what it like for a baby to die.

I've never liked the feeling of Noah being considered "textbook" or an "experiment." Our primary nurse in the NICU, always referred to Noah as "textbook." He has a neurological high pitched cry she would say. Although Chris and I never heard Noah cry not once until he was taken off the breathing machines and then it was so loud and powerful that we had no idea what she was talking about, yet she still insisted what we were hearing was a "defective cry." Noah has always cried just like any other baby. Noah will never get his gag reflex back she would say, because babies like Noah never do... and when he came home his gag reflex was very apparent as I gave him topomax medication.

It is so important for me to feel like they are treating the person and not the condition. Every individual is so different with a brain injury, you can't just lump them all together, it's not a one size fits all. Even therapy equipment is like that. The bumbo seat will never work for Noah. He has a Cushi Tush seat at home, that has a similar design to the bumbo, but has more support for him. And just like Noah loves the platform swing, I'm sure that it could make another child completely ill from the movement.

When Noah started to get upset today in therapy, a small little girl came into the room out of nowhere to inquire why he was so upset. I was distracted both by the little girl wanting to touch Noah, Noah being upset, and knowing that the only thing that was going to soothe him was a trip home for a nap and a bottle. His therapist tried to calm him by taking him into the large room where it was the busiest I had ever seen it. In my moment of soothing mommy mode, I had that feeling like it was like herding cattle, so many people all in one place, all trying to find a bit of space to get their hour of therapy in. That feeling of too much going on at one time to even know where to begin to place your attention.

His therapist agreed that we should find a better time for Noah's therapy but indicated that it could result in having to change therapists. At first I was hesitant to consider it because I am a creature of habit, but it might just very well be a change that Noah needs.

The only thing I really know for sure is how much I believe in Noah. Things are not going to come easy for him, but he has all the chance in the world at recovering. I know there are many that have their doubts about him, but I don't think any of that is written in stone yet. Everyday something new blossoms in Noah.

Stacy, Chris & Noah

Friday, January 1, 2010

Noah's First Year Video

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Happy New Year!
Noah's First Year Video in Review has been posted online for viewing. It was truly a beautiful year filled with many blessings.