Noah's 9 Months Old

Noah is now 9 months old. Noah still isn't doing things that most 9 month olds can do. He still cannot sit, cannot roll, cannot get his hands to his mouth with toys and still struggles to even grasp a toy. Yet Noah's smile and laughter seems to make up for any thing that he lacks physically. He grows happier by the day, and I'm so very glad that I feel like he really wants to be here, our little fighter. And even though every day is filled with a new obstacle, something that is always difficult or even painful, I know that God continues to hold Noah in his hands.

Noah was finally able to be in a regular snugglie. His head control has improved enough that he can now be in one without his head bobbing forward or backward. That in itself is a huge improvement. Noah also had another first today. He had mashed potatoes of the first time. I was so nervous that he wouldn't be able to swallow them and that he'd gag and choke, but he did great, just like he knew exactly what to do.

I am beyond proud of Noah. He has come so far in these 9 months. I'm so in love with this little person. He teaches me something every single day. His eyes filled with God's love staring at me every morning, with an unspoken, "I'm glad to be here mommy". I feel so very blessed that God trusted me to care for his child. In the beginning you question what did I do wrong to deserve this heartache and pain? But it's not about what I did wrong or right, this was not punishment, but rather a reward. God graced me with just that one wish. He let Noah stay. Even though I think God had already made arrangements for Noah's purpose that December day filled with the promise in a rainbow, I'm glad he heard my pleas for this beautiful little life that I get to be with each day.

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

Love,
Stacy, Chris & Noah

Noah's Speech Evaluation

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

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

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

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

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

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

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

Love,
Stacy, Chris & Noah

Noah Rolls Away...

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

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

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

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

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

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

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


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

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

Love,
Stacy, Chris & Noah

Noah's Still Dining...

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

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

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

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

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

All You Are
(by Michael Card - based on a poem by George MacDonald)
Where did you get those eyes so blue?
They're from the sky that you passed through.
Where did you get that little tear?
Did you find that it was waiting for you here?
And what about your little nose?
He knew you'd need it for the rose.
And as for your soft curly ear,
He knew there would be songs for you to hear.
How can it be that you are you?
He thought you up and so you grew.
Because you're mine, it must be true,
That he was also thinking of me too.
For all you are, and all you'll be
For everything you mean to me,
Though I don't understand,
I know you're from the Father's hand.

Love,
Stacy, Chris & Noah

Noah's Biscuit

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

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

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

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

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

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

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

Love,
Stacy, Chris & Noah

Noah's Rody

We finally got Noah's Rody all blown up for him. I think he really likes him just as much as the one he plays with at therapy. He continues to reach for his little blue ears, however his balance is still difficult for him so he always winds up leaning backwards in an attempt to hold them. Rody's new home in the formal living room so the dogs don't attack him. Everyone loves Rody except Hollie and Brystal. To them he's is the ultimate blue enemy that they are dreaming about biting and deflating...

Our whole house is beginning to look like a playground. Every room is filled with therapy for Noah. Mirrors line the family room, Rody is now safely living in the formal living room, I have sensory balls in the dining room and Einstein mats and a play yard in the Master bedroom. So I figured why not complete the entire house and install that fancy swing in the basement for Noah's therapy. I found the therapy platform swings online but they are all between $200-$300. I'd really like to get one for Noah, but it's not within our means right now.

Noah's grandma Marsha and his great-nana got to go to therapy with him for the first time this week. They went to his Friday physical therapy session. They got to see Noah swing and practice his head control. He was a little fussy, but I think it was to get his way to be put on the swing. Noah is very particular about getting what he wants.

Noah also dinned out for the second time this week at the Village Inn again. I like that it is quite there, and not overly busy. That way should Noah be difficult he's not interrupting someone else's fine dinning experience or wrecking someone's anniversary or birthday dinner. This time he went with the whole family. He did wonderfully, even better than the first time. We of course still have to tote around Noah's special high chair. But at least it's light weight and it travels well.

Noah also had a recall on his stroller this week. Of course it has to be the buckle that holds the five point harness in. I wish I could afford to get in another jogging stroller that sat him up with a five point harness, but I priced them today at Babies R Us and they're a minimum of a $150. It's always difficult to buy for Noah because I have to think of if he can sit in it. Without a five point harness there's no way he can be in a stroller of any kind. Hopefully maybe next year he won't require that, and maybe he'll be able to sit up on his own and not need to be locked in. I wish that the things Noah needs would be just a little cheaper than they are. All of it just adds up very quickly.

I've attached some pictures of Noah's Rody on his blogspot website. He was up past his bedtime playing with Rody so he looks very tired. Hopefully when he's got more energy will be able to take some bright eyed pictures.

Love,

Stacy, Chris & Noah

Noah's Rody

Noah sitting on his new blue Rody for the first time

Noah riding wild!

Noah, Daddy & Rody