Noah's Snow Day

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.

Love,

Stacy, Chris & Noah

Noah's Snow Day Pictures

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