Noah is 10 Months Old

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.

Love,
Stacy, Chris & Noah.

When You are Low on Hope

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).

http://www.maxlucado.net/_product_30305/A_Love_Worth_Giving_%28Paperback%29

Noah's Kid Cart

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.

Love,
Stacy, Chris & Noah

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.

Love,

Stacy, Chris & Noah

Noah's New Walker

Noah's New Walker

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.

Love,
Stacy, Chris & Noah

Noah's Three Course Meal

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.

Love,
Stacy, Chris & Noah