Wednesday, October 28, 2009

Noah's Snow Day

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Noah had his very first lolly-pop in occupational therapy on Monday. His therapist Julie has to be the person of the week for Noah for sure! She tried to show me how to put weight bearing on Noah's arms, how to massage and work out some of the tension that he has. Noah has tremendous difficulties with his hands and arms. His arms are simply so stiff that he cannot get things to his mouth. I've tried to motivate him by putting squished pumpkin pie on his high-chair table, but he gets so frustrated because he can't do it. Noah understands it needs to make it to his mouth, his brain just is having trouble telling him how to navigate it even remotely close to eat it. He squeals with frustration and I feel terrible that it is so difficult for him.

Julie also told us his Medicaid approval went through for more occupational therapy, and that they even approved a few home visits, which will be great to give Chris an opportunity to participate in therapy without missing work and for Julie to see the set up that we currently have for Noah to see if we can make any improvements that would further help him.

Noah had a snow day today. His therapy was cancelled for the morning due to weather. I had a conversation with Noah and told him he would see his Miss Beth next week and he started to pucker. Poor thing I think he actually understood there was no swinging today. Noah's currently in a semi-frustrated mood anyway. I think he just wants to move so badly that he doesn't know what to do with himself, part of it could be teething and then just general fussiness.

Noah got to see his daddy early today because his work closed down early due to the snow. So we bundled him up in his first snow suit and took him outside. He really isn't a fan of falling snow. He was annoyed to say the least at the flakes landing anywhere near or on his face. He might enjoy the snow more after it quits falling, or he might just not be a snow bunny. He loved watching his daddy shovel, and our sweet neighbor helped snow blow our driveways. They are so very kind, and I'm so thankful to have them as neighbors. I hope that I can teach Noah the importance of acts of kindness for others.
As I watched the snowflakes dance around us, I felt like we were inside a magical snow globe, for a moment everything stood still, the sounds so silent, the breeze quieting even the loudest of birds. For a moment my mind was calm and I felt nothing but Noah's soft breath against my neck, the sound of him gently whimpering as the flakes hit his tender skin. Peace and stillness in the cold. He looked at me with such sweetness with that small little smile, the white of the snow making his eyes even more crystal blue than before. It was a moment of pure love.

You can view more of Noah's Snow Day pictures below.
Stacy, Chris & Noah

Noah's Snow Day Pictures

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Saturday, October 24, 2009

Noah is 10 Months Old

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Noah got to celebrate his daddy's birthday Tuesday. Noah loves to participate in singing happy birthday and watching the blowing out of candles. I think he'd love to blow them out himself, and one day I know he will. I can only imagine the wish his daddy made, but I'm sure it was an extra special one. Chris and I will always be making similar wishes probably for the rest of our lives.

Noah is back to finding the weather very unappealing. I don't blame him the wetness limits his options. I've also been unsuccessful in trying to find Noah a used Special Tomato seat. I had contacted an organization called Kids Mobility to see if they could help us get used equipment for him. They said they didn't have anything like that they handle primarily wheelchairs and walkers, not chairs. We are still waiting to hear if we will be able to get help getting Noah a platform swing through Two Angels. They review applications quarterly and indicated they will be reviewing his application in November for a decision in December. I wish I could also find a bath seat for Noah so he could sit up and play in the tub, but since Noah cannot sit yet, a regular bath seat wouldn't work and I'm sure it would be another very expensive special needs item. There are days when I ponder for hours on end, how to accomplish getting Noah everything he needs.

Noah had his physical therapy Wednesday, and we got to see both Beth and Nikki. Beth did his therapy but Nikki was close by so that Noah could watch her. Although he was very droopy, mostly from a nap I cut short and a little mixed with hibernation weather, but he just hung out and was like organized jello. You're thinking what is organized jello? Well it's Noah's stage of being focused yet he's still a bit like how jello jiggles.

His therapy is also doing a Halloween room, with treats and lights. Nothing scary but like a room where the kids can do a mini trick or treat after therapy. It's very cute, and Noah looked at the door with all the caution tape in tremendous curiosity. It was also so nice to get to talk to both Beth and Nikki, they are some of the sweetest people I've ever met. When my day feels like chaos, they help make me feel grounded.

Noah also turned 10 months old this Friday. It's hard to believe that almost one year ago our journey began. As the months go on, I watch other babies his age moving on to their milestones, while Noah is still trying very hard to get there. My mother keeps telling me I'm lucky that Noah will be a baby longer than others because once they become mobile there is nothing stopping them. I try to find comfort in remembering that.

I'm excited that next week we'll get to celebrate Noah's first Halloween. His buddy Bill dropped off some sugar pumpkins for him. I painted them them all up for Noah with nail polish since we didn't have the money for craft paint. I think they turned out adorable, and Noah talks to them every day like they are actual people. I named them: Mr. M, Just Jack, Cinnamon, and Clover. Chris and I are looking forward to carving Noah his very first pumpkin next week. We're building the most beautiful memories as we go.

Stacy, Chris & Noah.

Friday, October 23, 2009

When You are Low on Hope

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I received this beautiful article from a friend today. I found it to be just exactly the "hope" that our little Noah is about. And as his buddy Bill stated "Noah already has his olive leaf and is already in God's olive branch." I give thanks always to all of the "doves" that have never left our side, that continue to help and love us everyday.

When You Are Low on Hope
by Max Lucado
Water. All Noah can see is water. The evening sun sinks into it. The clouds are reflected in it. His boat is surrounded by it. Water. Water to the north. Water to the south. Water to the east. Water to the west. Water.

He sent a raven on a scouting mission; it never returned. He sent a dove. It came back shivering and spent, having found no place to roost. Then, just this morning, he tried again. With a prayer he let it go and watched until the bird was no bigger than a speck on a window.

All day he looked for the dove’s return.

Now the sun is setting, and the sky is darkening, and he has come to look one final time, but all he sees is water. Water to the north. Water to the south. Water to the east. Water to the …
You know the feeling. You have stood where Noah stood. You’ve known your share of floods. Flooded by sorrow at the cemetery, stress at the office, anger at the disability in your body or the inability of your spouse. You’ve seen the floodwater rise, and you’ve likely seen the sun set on your hopes as well. You’ve been on Noah’s boat.

And you’ve needed what Noah needed; you’ve needed some hope. You’re not asking for a helicopter rescue, but the sound of one would be nice. Hope doesn’t promise an instant solution but rather the possibility of an eventual one. Sometimes all we need is a little hope.
That’s all Noah needed. And that’s all Noah received.

Here is how the Bible describes the moment: “When the dove returned to him in the evening, there in its beak was a freshly plucked olive leaf!” (Gen. 8:11 NIV).
An olive leaf. Noah would have been happy to have the bird but to have the leaf! This leaf was more than foliage; this was promise. The bird brought more than a piece of a tree; it brought hope. For isn’t that what hope is? Hope is an olive leaf—evidence of dry land after a flood. Proof to the dreamer that dreaming is worth the risk.

Don’t we love the olive leaves of life?

“It appears the cancer may be in remission.” “I can help you with those finances.” “We’ll get through this together.” What’s more, don’t we love the doves that bring them? Perhaps that’s the reason so many loved Jesus.

To all the Noahs of the world, to all who search the horizon for a fleck of hope, he proclaims, “Yes!” And he comes. He comes as a dove. He comes bearing fruit from a distant land, from our future home. He comes with a leaf of hope.

Have you received yours? Don’t think your ark is too isolated. Don’t think your flood is too wide. Receive his hope, won’t you? Receive it because you need it. Receive it so you can share it.

Love always hopes. “Love … bears all things, believes all things, hopes all things, endures all things” (1 Cor. 13:4–7 NKJV, emphasis mine).

Monday, October 19, 2009

Noah's Kid Cart

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Noah has loved the sunshine the last couple of days. We took him to the grocery store with us in an attempt to try out the grocery cart seat insert with harness that we purchased for him. It wasn't even remotely close to helping him sit in a grocery cart. I'm not sure it would even be safe for a child without special needs. Great concept, but needs a lot of work. There's nothing that I could even do with it to make it better, so it will be getting returned for a refund.

Noah was measured for a kid cart today at therapy. We had to chose between something called a Special Tomato and a kid cart. The kid cart is more expensive ranging from $3500-4000, and the Special Tomato runs around $800. Medicaid will only pay for one item so we chose the kid cart. I really love the Special Tomato from pictures, and I still hope I can find a way eventually to get it for him. The kid cart is a stroller like device that also has removable seating for positioning indoors. It will be custom made for Noah and will take about 3 months to get ordered and approved through Medicaid. We picked out navy with silver trim for him, since I know he'd be very upset with me if I had chosen either pink or purple. In pictures it looks really nice, but it does look "special" meaning I'm sure that most will recognize it's not your run of the mill stroller. I have people ask me about his thumb splints when he wears them out in public, and I'm sure they may very well ask me more questions about him when they see his new ride. Honestly it doesn't bother me, I'd rather have someone ask me about him than wonder. I don't mind talking about Noah, clearly, or Caringbridge wouldn't exist for him. I want to tell people in fact where we started from and where we are now. Noah is hope. Noah is a miracle.

Yet I do wonder how some family and friends might perceive Noah as his differences grow more apparent as he grows older. Will they be embarrassed of him? Will they stand proud? And does it matter either way? There are moments that define all of us, our moments of truth. I hope that people seek to understand, to take the road less traveled, to find compassion and love. Not just for Noah, but for all that are different. They are no less valuable, their souls and hearts no less precious.

Stacy, Chris & Noah

Saturday, October 17, 2009

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I'm a Pumpkin!

Having a Good Time

I'm actually sitting on pumpkins!

Daddy & Me

Mommy & Me

Noah had a very busy Friday. This morning we made the drive to the Children's Hospital in Broomfield to meet with the rehab specialists for the first time. I really didn't know what to expect out of the appointment. We met with Kim, and then Pam Hill who are both rehab specialists. They both were very nice, and seemed pleased with the progress that Noah is making. They have decided at this time not to label Noah as having Cerebral Palsy (CP). It doesn't mean that he doesn't have it, or won't carry that diagnosis later on. It's still a possibility, but too early to tell since Noah is still developing and progressing. They say his hands to carry signs of maybe having CP, since he likes to close his fists tight when he's concentrating or focusing, his ankles can bend upwards so he's a little loser than maybe he should be, yet puts weight evenly on both feet. It's also very possible that Noah just needs time to grow into himself and is just going to be a delayed child. So for now Noah just carries the (HIE) diagnosis and will have to wait and see in a few months to a year if the signs of CP continue to present themselves or not. Either way it's still a brain injury no matter how it winds up being categorized.
After Noah's appointment he took a mini nap and we had lots of time before his afternoon therapy appointment so Chris and I decided to go on a family trip to the Rock Creek Pumpkin Patch. Noah loved it. He's an earth baby. He played in the hey, and got some stuck to his socks and he spent much time trying to think about how to pick it off himself. It was very amusing for us to watch. Noah thought very hard and focused with all his might to pull at each straw. It's wonderful to watch Noah think. He is very smart. The pumpkins had been hit by a hard freeze so they were not worth purchasing which was sad, so we'll have to buy some at the grocery store later on.
Noah got to see a small petting zoo that they had at the pumpkin patch. He got to see a Donkey, some ponies, pigs, goats, sheep and two baby calves. It's the closest thing to the zoo he's seen so far. But he spoke to each animal individually as if he was giving them a very important message. He spent an extra long time chatting it up with the donkey, who was all alone in his pen without a companion.
After the pumpkin patch we headed off to therapy so his daddy could see Noah in action. Chris really was excited to go and see what Noah does at thearpy. Noah is so very lucky to have a daddy that takes such tremendous interest in his well-being and development. His daddy is so proud that they couldn't possibly make a bumper sticker that big and he probably glows so bright people can see it written all over him.
We got to have our last therapy session with Nikki, our Friday therapist. I was worried it was going to feel like a good-bye that I didn't want to happen, but it didn't. Nikki will always be there for us and said she could even be a substitute if our other physical therapist was on vacation or ill. She mentioned it was probably a good idea to take the wheels off of Noah's new walker because he's so intelligent that if he were to figure out he was unintentionally moving himself backwards that he might make a habit of it. And we want to only help his brain navigate the good ways not the bad. She also put Noah in what I call the "crouching tiger position" (as I name everything). I hadn't thought to put Noah in an all four's position like that really, I've simulated crawling for him, but I don't think that's beneficial yet for him, he doesn't understand that he can take off in a crawl, but he does understand putting weight on all fours, and does quite great at it. So I'll have to practice that lots more with him as I think if I do all fours, the light bulb might eventually go off with him that he can take off from that position and move.
We also finally got the ducocal supplement to arrive. It came along with a long a large folder of documents that I need to read and sign. Noah weighed 15lbs 12 ounces at his appointment yesterday, so he is gaining just slowly, but Noah burns so many calories because it's like going to a baby gym for him all the time that I'm sure the extra calories might help him reach twenty pounds sooner so we can hit our goal of turning around that car seat. My gut instincts as a mommy tells me that Noah's car seat problem could be completely fixed if he were able to be turned around.
Although Noah had a very busy day, he remained happy, alert and full of life. We shared a beautiful day as a family and feel so blessed that God has given us all that he has.
Stacy, Chris & Noah

Noah's New Walker

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Wednesday, October 14, 2009

Noah's New Walker

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A sweet friend that follows Noah's progress sent me information on the Anat Baniel Method for therapy treatment a few days ago. I finally had a chance to look at the website. The testimonials sound like this type of therapy makes you almost near perfect within a matter of sessions. There is a DVD that I could buy and watch but it's $109. And not something that I see us being able to purchase anytime soon. I want so badly to believe there is a way - some way out there of reversing every single difficulty Noah has. If I could find a way to believe it was all just that easy, I'd find a way to fly away to California today. It often feels like trying to chase a butterfly without a net.

It was wonderful to talk to Noah's therapist, Beth, about all these alternative therapies that have been on my mind lately. She's like my link between the special needs world, the world in between, and the world as I once knew it. She understands the entire circle. Although she hadn't heard of the ABM therapy method either, she told me that she's never seen a complete recovery from any form of alternative therapies. Some children improve, but do we know if it was the alternative therapy, regular physical and occupational therapies, hyperbaric oxygen chambers, stem cells? No, not really. It might be a combination of things or none of those things. It was so nice to discuss how I was feeling about all these alternative therapies with her, because it just blew down all these huge bricks I've been building on my chest. A relief to know that in my heart, I am doing all that I can do for Noah. Even if I found a way to spend thousands upon thousands of dollars it is no guarantee that Noah would be any better off. I think that Noah's therapy has also in a way become my therapy. The freedom to feel as if Noah and I belong in a world which often reminds us we're not a part of the rest.

It's every mother's dream to have a child completely healed and recovered. I think often times the medical community thrives on that hope, they'll sell you any bill of goods they can because in the end it means a dream for you and money for them. And we are vulnerable. Easy prey. Our already sensitive heartstrings can be pulled and manipulated in various directions.

I asked Beth today if Noah could have a walker or bouncy seat. She said she thought it would be alright since Noah was putting weight on both his feet and didn't seem to have a tippy-toe problem at this time. I was excited simply because to me it meant it would be something an ordinary mother could get for their baby. But as all things go it wasn't as easy as that. We waited until after dinner hour to go out so there would be less people in the stores for Noah. We took our antibacterial wipes and just wiped down his hands after we sat him in each walker seat they had. Each one made him look like a floppy rag doll. He was all over the place in them, even if I used a blanket or a towel to put in the seat, none of them would have supported his neck or back or been able to give his body any sense of balance. It's a very hard thing sometimes. I forget because I'm Noah's mom just how different his little body can be, until I'm presented with situations that point it out to me. In pictures I'll admit Noah looks like any other baby, but he's not. I left Babies R Us feeling discouraged, with my face turning hot, my eyes watering as I held back yet just another painful moment.

My mother went with us to be a third set of hands because with Noah sometimes we need more than just Chris and I to shop and hold Noah at the same time. My mom detecting I'm sure my slight sadness over not being able to buy something I really wanted for Noah suggested all these other places we could try. In my head I kept thinking nothing is out there for Noah. Nothing is made for a baby like him. But Noah was still in a good mood and her suggestion of stopping off at Sears was on the way home.

Upon arriving on the second floor of the store, suddenly the perfect walker appeared. It was a Kolcraft Sesame Street Elmo Walker. I put Noah in it and he melted right in. It supported his back, gave him a snug fit, and his feet touched flat on the ground. Instantly he lit up in happiness and started to walk backwards with his feet. I was so happy just to see Noah moving I didn't even care that he was throwing his ride in reverse. My mom didn't even think twice, she picked up the box and off she went to the cashier. We had found it. The perfect walker just for Noah. And for a moment walking out of that store I felt like a mother that had achieved finding something her baby could enjoy.

Stacy, Chris & Noah

Monday, October 12, 2009

Noah's Three Course Meal

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Noah finally got out and about today the first time since Wednesday that he's left the house. We headed to therapy, but when we got there our therapist said she thought she might be coming down with something and gave us the option of just skipping this week, so that's what we decided to do. I'm so very glad she was thinking of Noah and not wanting to take any chances with him just in case. They are such a great group of people that are so loving and kind. So

Noah was still in a good mood from skipping therapy so we stopped by his uncle's work to say a quick hello. Noah's uncle has one of those smiles that instantly warms up a room, and Noah just smiled and talked to him. I think honestly if Noah could talk he would have said just leave me here and come back for me at the end of the day. I think the two of them will be best friends when Noah gets older and will be playing with cars and auto parts.

We got a call today from a place called Option one. When they called they said they wanted my address for services for Noah, and I had no idea who they were or what they were talking about. They got defensive and asked who I was, and I said I was the mother and and needed to know the nature of the call before I was going to give out my address. They said they were the nutritionist people who would be delivering the duocal. They could use a little better people skills when they are making calls. He read me something you could tell was a general speech about medical confidentiality, said I'd need to sign paperwork when it came, and didn't explain why. One more thing I'll have to read when it comes in the mail.

Honestly with as much as Noah is eating I'm not concerned about his weight. Just because he doesn't fall within a high percentile on a chart doesn't mean that he's not trucking right along and is healthy for his particular body. Noah ate a good sized bowl of squished avocados, a jar of pears and probably a good teaspoon of pumpkin pie for dinner. He eats and drinks like a trooper all day long. I was a lean baby, from pictures I'm thinking his daddy wasn't a chunky monkey either. And on the news tonight I heard they denied a 4 month old health care coverage because he's 17 pounds and deemed obese. That is just crazy on so many levels. Our healthcare system is out of control. It's so silly to put all these categories on these babies based on some percentile chart. I would worry if Noah was losing weight or not gaining weight at all, but he keeps going up just a little at a time.

I was also able to treat myself to one last Starbucks from a gift card that I've been nursing along for sometime. I wanted to use it before the sweet barista that I've become friends with at Starbucks left on maternity to have her first baby. We met over a conversation about Noah. And she hasn't forgotten us every time we go in. Her name is Eva, and she's naming her little boy Sirus. I was always careful talking to her about what happened at Noah's birth not being the norm, and that it's like getting hit by lightening. I always hated when I was expecting all the people telling me horror stories and all the bad things that could go wrong. It's not at all helpful. I will miss my occasional Starbucks and seeing Eva, but maybe after her baby is born I can see her in the new year.

I just absolutely love all the people I meet along my days. I collect thoughts of them in my pocket and pull them out when I'm having a down moment. It's been a blessing all of these people God sends me to meet along my road. They are teachers and guides, all helping point me in the right direction so that I can properly travel.

Stacy, Chris & Noah

Noah's Pumpkin Pie

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Noah had a cozy weekend all bundled. He loves to snuggle with a fuzzy blanket when when the weather is chilly outside. He even gets this cute little hibernation snore during naps. I think Noah may be suffering from cabin fever already. He misses going out in the backyard to watch the neighbor's tree blow in the wind, or watching his dogs run races around the yard.

We tried to keep Noah busy by letting him watch our various home improvement projects. We have grown to call our home the money pit, as daily something is breaking, leaking, flooding... all things that are very damaging if left ignored and unattended.

Noah got to watch his daddy fix a toilet, and work on plumbing that has been leaking and flooding our basement periodically. He watches intently as his dad describes everything he's working on. Noah isn't particularly a fan of the shop vac, I think the noise is a little overwhelming for him. He jumps then keeps flinching his eyes until it's shut off. And when Noah got bored of that we let the facet run, because he finds running water entertaining. Yes I know it's not very "green" of us to let water just run, but when you have a baby that you can't calm any other way, you just apologize to the earth and turn on the facet. It could be a very long winter unless Noah finds watching snowflakes fascinating.

We also tried a new baby food that was a pasta puree, I had put that flavor off for a while because it had organic onions and garlic in it, and figured well his daddy won't eat onions maybe neither with Noah... and sure enough Noah spit it out and gave me that face like try it again and my lips are sealed. So I whipped out some pears and he was a happy little camper. Noah also got some more pumpkin pie for desert, minus the crust. I'm not surprised really that he enjoys pumpkin pie so very much since I wanted to eat it for breakfast, lunch and dinner for the last two months of my pregnancy. Chris and I joke all the time that Noah is made up of 80 percent butter, 20 percent pumpkin pie and a big sprinkle of love and that's why we sprouted such a big baby.

And with the changing of the seasons I somehow realized that Noah's clothes are mostly short sleeves. The season just crept up too fast on us. So I need to work on building Noah's winter wardrobe. And just about the time I get him into winter gear, he'll get longer and require another size entirely. We're trying to work on getting Noah some Robeez booties for winter. If they were more affordable shoes I'd pick one of each style they are that cute. Hopefully the sun will come out in the next few days and Noah can feel a gentle breeze and watch what leaves are left on the trees. I'm sure it would make his day!

Stacy, Chris & Noah

Saturday, October 10, 2009

Noah Learns to Snuggle

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Noah got to see his friend, Shelby as we were leaving physical therapy Wednesday. The two of them remembered each other right away. Maybe he noticed her pink cap, or the way she said his name. Her mother told her to be gentle, as she always must touch Noah, but honestly I don't think Shelby knows anything but gentleness. She held his wrist, looked at him, Noah smiled at her and I told her mom it was nice to see her again, especially since Shelby had been on my mind for sometime. I was relieved to see she was doing well, since I don't know where she is in her treatment and can only hope that she will be healed.

Noah has also learned to snuggle. If he's in a cradle position sleeping he moves his head and body up so he can be on my chest, which requires him to use his head, neck and stomach muscles to do so. Something that he's starting to do in the last three days. It's comforting for the both of us, and it's nice to see him being able to move like that, even if he is doing it in his sleep. He's napping great through the day often an hour to two hours, twice a day, I just wish his blocks during the night were longer. I read an article that was kind of comforting saying that the United States was really one of the only countries that focused on babies sleeping through the night, other countries simply let the baby do as they need. I admit sometimes you feel like you're doing something wrong when everyone else tells you their baby is sleeping beautifully. But this could just be another "Noah time" thing.

It's amazing how Noah can sleep through some of the loudest things; a terrible hail storm, high winds, the television up at good volume, the washer, dryer and dishwasher all going at once, even the doorbell. But he cannot find a way to sleep through the phone ringing, Hollie barking, the creaking of our floors, or the pop our television makes because it's so desperately trying to die and go to TV heaven. His therapist suggested white noise, and it's a great idea, but knowing Noah he'll find that one of the noises that he can't sleep through, because sometimes he just has to be the exception to the rule!

Noah's still only able to sit if I hold his waist, which to his credit is a huge improvement from six weeks ago. I remember taking him to therapy with no head control, he couldn't sit at all unless you put your index fingers behind his head and supported his entire body, and now you can hold him from waist down and he can sit for a minute without flopping over and losing balance. Sometimes I do give into internet searches to find out how many other normal developing babies are not doing something that Noah cannot do either. I know it sounds so silly, especially since I know that Noah is going to develop very differently from the norm, but it brings a sense of comfort in a way that there is still time for Noah to do all these things. Super premature babies are evaluated at a different age rate. For example if a premature baby's actual age is 9 months old, they may say their developmental age is 7 months. Which means that even though they should be doing things a 9 month should be doing, they are not because technically they are at a 7 month old level due to being born 2 months early. Yet they fully expect the premature baby to eventually develop just like any other child. I would love to view Noah's HIE (Hypoxic-Ischemic Encephalopathy) the same way. So even though Noah is a little over 9 months old, he's behind a matter of months. I know very well that may not be the case for Noah and that there may be things Noah may never do. But I just have to keep hoping for the very best.

Noah has also grown increasingly curious about us drinking things and not allowing him to share. So I got brave and let him have some of my water in a cup. He did incredible. Sipped and swallowed like he's done it for months. Now I'm sure in a matter of days I'll hear the monkey sounds he does for food with drinks as well.

Noah is still having a really difficult time bending his elbows to get toys or food to his mouth. His hands are starting to grab things, although it's a weak grab, meaning he gets a hold of something and then it gets let go fairly fast. His arms remain stiff at the elbows and he doesn't seem to know how to get them to bend to his advantage yet.

Noah hasn't been out in since our last grocery trip. It's just too cold and too much illness out there to risk his health. It always makes getting together with family and friends harder, since Noah can't be around those that are ill, and little ones during the winter times that could give him a bug. Chris and I have even devised a plan should either one of get sick what will happen. It might sound so silly to some, or even make us pretty unpopular, but we're just doing the best we can to make sure that Noah doesn't get seizures and go backwards. We don't want to lose all the beautiful progress we've made so far. And as his parents we are responsible for doing the best we can by Noah.

There are days I'll admit where Chris and I feel like we're in this alone. The three of us, doing the best we can. Holding it together when we simply feel like crumbling. We have no option to quit, we cannot give up, we cannot raise the white flag and surrender in our uncertain circumstances, sadness and fear. Although we might want to, that would serve as no example for what Noah is going to need to witness to grow into a strong man and overcome his shortcomings. And just when we think that we're losing the battle and giving into our weakness, God sends an angel to remind us we're going to be okay. The love from strangers that have become like our extended family, they step in at the most perfect moments to remind us that although we may feel alone, we are not.

Stacy, Chris & Noah

Tuesday, October 6, 2009

Cool Cap CNN News Report

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This was an article on CNN today regarding a baby that had the same brain cooling as Noah at birth with the same hypoxic ishemic injury due to a traumatic birth. It sounds like the prognosis for her is really positive. Pictures and video look just like Noah did when he was born, it made his head swell and he was a little puffy with his silver helmet (cool cap). I'm so glad that Noah underwent brain cooling. There is a link to the CNN article at the very bottom should you wish to see the pictures and video that accompany the article. I also attached pictures at the bottom of Noah in his cool cap for those that haven't seen it before.

Miracle baby survives 20 minutes without oxygen

Reported by: Christopher Sign Email: Last Update: 2:07 pm
Miracle baby survives 20 minutes without oxygen

Slideshow PHOENIX - - A new high-tech tool that reduces the temperature of the brain is being credited with saving a baby's life at Phoenix Children's Hospital."She had no oxygen going to her, probably for over 20 minutes," said Phoenix Children's Hospital Doctor Christina Carballo.Chastilin Ramirez's mother suffered a possible stroke during the delivery and died en route to a Phoenix hospital. An emergency cesarean section was performed and Chastilin was taken to PCH with a slight heartbeat and unresponsive."We did not think she (Chastilin) was going to pull through," said Carballo. "We used our newest technology to help the brain recover."With a lack of oxygen, Carballo said she wanted to prevent toxins from the injured brain cells spreading to other parts of the baby's brain.The team of doctors turned to a device called the 'Cool Cap' which drops the brain's temperature."Which slows completely the metabolism of how the brain is surviving at that time," said Carballo while standing next to the Rodriguez-Ramirez family outside PCH.The cap was placed on Chastilin's head for 72 hours, and doctors simply watched and waited to see if it had any effect."She did nothing, she was still on a ventilator, she didn't breath above the ventilator, she didn't move," said Carballo.For all practical purposes, doctors assumed Chastilin's brain had died.According to Carballo, the lack of oxygen during birth resulted in Hypoxic Ischemic Encephalopathy, which means the brain was deprived of oxygen before and/or during delivery.The baby's father, Maurilio Rodriguez, was told his daughter might not pull through and that he needed to prepare himself and decide whether Chastilin should be removed from life support.The team of doctors in the newborn intensive care unit then waited 24 hours and conducted a final check of brain activity.The Rodriguez-Ramirez family and PCH doctors watched as a miracle unfolded."She (Chastilin) started responding, we got her off the ventilator, she started sucking, grabbing hands, looking at people, she came back," said Carballo as she smiled at the baby.Just days after burying Chastilin's mom, her family is taking her home.This is the couple's sixth child."Oh, well, we're just so happy she's coming home with us," said Chastilin's 14-year-old sister, Jessica.Doctors admit they were surprised and impressed with the baby's progress and credit the use of the 'Cool Cap' with saving her life."We were able to give her a second chance, really, to a normal life," said Carballo. "Before 'Cool Cap' we've had no other way to give these babies a quality of life, cooling the brain lets us offer hope."Phoenix Children's Hospital officials say the 'Cool Cap' is currently the only weapon doctors have that can prevent or reduce the severity of neurologic injury associated with HIE.According to Phoenix Children's Hospital doctors, it is one of two hospitals in the country that uses the 'Cool Cap'. The other hospital is located in California.A Wells Fargo account has been set up to help the Rodriguez-Ramirez family pay for medical bills and other expenses.The account number is 283363745 and registered under the Ramirez Family. Doctors say Chastilin will have frequent check-ups, but is expected to make a complete and full recovery.

Noah's Cool Cap

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Monday, October 5, 2009

Noah's Nuby Success

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Well of course just when I think Noah can't do something he goes and proves me wrong. I just love that spunk. I sweated him trying a sippee cup for months and today he tried his Nuby cup at therapy like it was no big deal. He even showed off for his therapist and ate squished bananas. She did try to get him to drink from just a regular cup, but I think Noah was nervous about it, or maybe fussy because he's had some delayed pooping issues lately so he's been a little squirmy. I think if offered a few more times he'd get brave with that too. I am so relieved about the Nuby cup experience. Granted he still doesn't really want to hold it himself, and tends to get frustrated unless it's being held for him, but I think he'll realize eventually that his hands do come in very handy with getting what you want. Everything is just in "Noah time."

I'm also excited to report that we might not have to take a break from occupational therapy. His therapist, Julie, thinks she can work out still doing therapy while working on aproval from Medicaid. Which is excellent news, then we don't have to take a break and Noah can continue learning from her great examples. And it's so very nice to have her reassurance each week, her tips on what I can do to better help him. It was a nice surprise to the day.

Next week Noah will be meeting with a representative that will give us ideas on what equipment might best suit Noah's needs. We're hoping to get him fitted with a seat that would act like the tumbler seat does, while also serving as a seat that will fit into a stroller. So it will be equipment that we can adapt to serve multiple functions. I'm really looking forward to that. I'm sure Noah would love to sit up at a 90 degree angle and see the world. His current stroller will only allow him to sit at 45 degrees and the harness has him so stuck in there I'm not sure the poor little guy can even move his head side to side very well. It's incredible the amount of things they have to help special needs kids be just like everyone else.

Today I stopped by Safeway on the way home after therapy to get more prunes to help Noah's little potty situation. Which means bring on the diaper blowouts again. The check-out lady was wearing latex gloves while checking out customers. I mentioned to her that it was great she was germ conscious because not everyone is, and I said people like me that have a greater challenge of keeping a baby from becoming ill to avoid seizures that I really appreciated that. She asked me about Noah's brain injury and said that her sister had a baby that was born with only half a brain and was told the baby would only live one week and that baby went on to learn to walk and talk and is now two years old. She said the baby has some problems but that she is learning to function better everyday. I love chance meetings with inspiring messages of hope.
Noah is still not a sleeper. I don't know if it's his sprouting teeth, if he hates the way his flannel sheets feel, if he's too hot or too cold. He's up just about every 2 hours like an alarm clock. He always wants to eat, although sometimes not full bottles, sometimes he's easy to get back to sleep, other times he waits until I'm tucked back in bed before I hear him crying on the baby monitor again, and then we could spend an hour or more doing the I'll sleep in your arms but not in the crib routine. Maybe by his first birthday he'll learn to be a better sleeper. I know that I would love to sleep 8 hours straight again someday.

I purchased Noah a grocery cart seat with harness that I found online. I got it today and it might work, but I think it still might have some safety concerns, like the back head rest doesn't attach to the back of the cart, so I think it would allow for a baby to come forward and it their head on the bar if they didn't have balance. I'm not really sure until I try it out if it's going to be a good purchase for Noah. It has the right idea with having a 5 point harness for a grocery cart insert, but it still might need some fine tuning, and I might be able to sew it to make it work, I'm just not sure yet. I don't imagine with sick season here that Noah will be going with me too often to the store anyway. We'll just have to hibernate together and come out in the spring. Just like a mamma bear and her cub.

Stacy, Chris & Noah

Friday, October 2, 2009

More Changes For Noah

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More changes for Noah on the therapy front today. Medicaid has only authorized 14 more sessions until the end of December which means we can't continue doing twice a week or we'll run out of sessions too soon before we can get more approval. So we now have to go back to doing physical therapy once a week now, rather than twice, and because we have to temporarily take a break from occupational therapy until we hear from Medicaid that means that Noah will now only get therapy once a week rather than three times weekly. It's not what I would want if I had a choice. I like the way things are now, I like going three times a week, I think Noah is responding tremendously well with all three therapists, I like our routine. In fact I'm a little saddened by it.

I overheard another mother today at therapy talking about alternative therapy that she's taking her child to in California soon. And I know of two other mothers that took their children to the NAPA center in California for three weeks of intensive therapy. I came home feeling like I'm not doing enough for Noah. I feel forlorn.

I do my best to put on the brave warrior outfit everyday. But I'm just as scared as the next person, just as fearful about the future. Chris doesn't have these fears. He fully believes Noah will learn to walk, talk, run, ride a bike, drive a car one day, get married and have children and live a beautiful life. I however want a promise. I want a guarantee that he will. I want God to put it writing so I can frame it my hallway and look at that written promise every morning. My head swirls with thoughts about today, about tomorrow, about years from now. It probably goes back to the "planner" in me. I want to map out everything thinking I somehow can change things for the better, make things different. But I can't it's like holding sand that slips through my fingers. And it's not that I can't accept Noah for whatever he will be able to do, it's just wanting the very best life for him.

There are so many levels of guilt, and I think each and every family carries that to some extent. If I had done this, he wouldn't have fallen in the pool, if I had changed her diaper first she wouldn't have choked on the cracker, if I had known Noah was in danger he could have been born sooner. There is some blame, some constant need to fix what we cannot undo. Everyone has had a moment in their lives where they wish they could go back and do something over, but this is on a much larger scale. Does that mean that we're a little broken? Maybe.

I see Noah doing things everyday that he couldn't do the day before, and I get so hopeful, I try to feed off of that everyday, all the positive things I see awakening in Noah. The older he is getting the more frustrated he is becoming with the fact that he cannot grab a toy, that he can't get things to his mouth. He squeals like a little piglet when he doesn't get what he wants or can't do something. But at the same time he is so driven and determined that I pray that if I give him enough time he'll find a way to get around his road blocks to accomplish all that he is trying to do.

My heart has also been distracted with thoughts of another little boy that is struggling right now. His name is Santana and he's one of Noah's listed friends on his website. He's in the hospital now and has been there for sometime. He's struggling, his mother sends updates that break my heart, as I know what she's feeling, every word she says makes me cry. I want to help her, help Santana, I want to fix it for all of us and I can't. It's impossible for me to stop thinking about them. I ache for all mothers that are holding onto their children and trying never to let go, maintaining the hope that God will help, that he'll heal all of our babies. I have to keep believing, it's all that there is.

Stacy, Chris & Noah

Thursday, October 1, 2009

Noah's 9 Month Check-up

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Noah's doctors appointment was today or how to really write about it. I could interpret today's appointment a variety of ways. Each day I believe holds a message within it for all of us. We may get that message instantly, days afterwards, years afterwards or sometimes we're so busy we fail to acknowledge that message all together. I like everyone else, am doing the best I can to find the messages I'm supposed to learn and grow from. And I don't always understand what I'm supposed to take notice of.

Someone once told me that the people in your life are the characters of your story. They come and they go, some stay for the whole ride, some pop in and out so ever briefly. They all have a purpose whether that's something positive or negative, but it's all meant to be. It defines and shapes who we are and what we become. I never really paid much attention to this really until Noah was born, and you take notice of the people that are there to support you, the people who leave, and the new ones that walk in to take their place. For everyone there is a time and place. I meet people in grocery stores, therapy waiting rooms, parking lots, or even walking around the neighborhood who all have a purpose in my story. Today's doctors appointment was one of those days where I met someone and I'm not sure if I'm suppose to learn something from them, or if I'm the one that they needed to learn something from, or if we're both mutually helping each other.

A different doctor waltzes into the room, and I of course go into somewhat of a stand-offish mode. Primarily because I have felt for many months that I can't get a doctor to follow Noah, to take interest in him, to follow him and his progress. I always feel like yet again another stranger. She said she was a doctor finishing her residency and that she'd be our doctor for the day. I told her I wanted to see the doctor we had an appointment with, she looked at me briefly with amazing eye contact and a hint of sadness and said, but I have a son like yours but he isn't doing well. She then looked at Noah with this look like he held the key to a promise she's been searching for, gently tilted her head and walked out the door to retrieve the doctor that I had requested. Maybe she was the one to become the person interested in Noah and I shoed her away, I don't know.

The doctor we were originally scheduled with comes in and measures Noah, listens to his lungs and heart, looks in his ears and weighs him. Noah is now 28.5 inches long, he does have long legs, but only weighs 15lbs 8oz and they think that he's underweight for his percentile. They think Noah needs more calories and want me to add formula to his pumped milk, and they are sending a supplement called duocal to the house from a nutritionist. I haven't researched it yet to see if the supplement has any negative effects or not. Noah looks healthy and doesn't appear like his weight is a problem. I tried to liquefy ground hamburger and pasta tonight but Noah gagged on the first spoonful. He's not ready. And I don't know when he will be.

After our appointment was over, the original doctor came back in with a sticky note giving me her home phone number, and said she was taking her son to Germany in November for stem cells. She asked if I knew of anyone that had done stem cells and I had mentioned two other mothers that I know that had gone to Costa Rica recently to have the procedure done. She asked if it worked, I told her I wasn't sure that it was still very early but that the mothers had reported progress. I almost felt like she was searching for hope in me, hope that Noah was doing well, and hope that her child would too. Even doctors are not except from the feelings that come with this journey.

They made me fill out a questionnaire today on Noah's developmental stages. I hate those questionnaires. They tell you every child, even without a disability, grows at a different rate, yet somehow they find standardized measures that they want to measure all children by. I think the only thing I even answered yes to was that Noah could socialize, but he cannot pick up a cheerio with two fingers, move toys from one hand to the other, but toys in his mouth, sit up, or roll over. The list was four pages long of me answering no to all the questions.

I still have days where I want so badly for Noah to be able to do everything that any other baby can do, where as his dad is content with just having Noah be whatever it is that he will be. I keep having these dreams about Noah. Last night I dreamt that Noah crawled for the first time on October 10th, I remember looking at the calendar, that being only ten days away I don't see that coming to fruition. I dream of him walking, I dream of him talking, I dream of him running towards me. I dream so much that it feels real until I wake up and remember I'm tucked in bed.

Hopefully they are dreams that I'll get to see come true one day.

Stacy, Chris & Noah