Sunday, March 27, 2011

Noah's New Gadgets

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Noah has had a pretty good week. It was slower than usual for our schedule since some therapy was on spring break this week. Noah and I just watched some of his sprouts grow that I tried to germinate in the house prior to making them fend for themselves outdoors since our nights are still a bit too cold for baby spud survival. I got him a new toothbrush kit, which I'm totally in love with. I wish I had found it months ago for him. It's a vibrating toothbrush and gum stimulator. It doesn't vibrate back and forth like you'd think an adult tooth brush would, but gentle vibrations rather as you brush traditionally. I think it totally makes the need for any Nuk gadget obsolete. Noah actually chases it around in his mouth with his tongue which I have to believe is good exercise for both oral eating and potential speech. But I highly recommend it. I'm very impressed with it. The only draw back is that they don't sell replacement heads yet for the toothbrush, even though it comes with one spare, after that you'd be forced to purchase a brand new pack.

I also found another really cool gadget. It is a soon that screws onto the top of the organic pouch foods, made by Plum Organics. The dispensing soon is fantastic for traveling with. Most children Noah's age could just squeeze the pouch full of food themselves, but since he physically can't do that yet, this attach-on spoon makes it so much easier to feed him in between appointments and therapies, or even at home. I still try to Vitamix what meals I can for him, but realistically we're still dependent on baby food, even though the cost for us is much higher than it would be for most families since Noah cannot eat solids.

We also switched Noah from Pediasure to Organic Pedia Smart. It comes in Vanilla and Chocolate and he seems to really enjoy it. It does taste different than Pediasure, but I think in a rather good way. I'm really excited that he's taking a liking to it, as the ingredients are a lot better for his health long term, and he still isn't a child that will drink juice or plain milk no matter how much I try to encourage it. I'm sure he will eventually, but like with everything with Noah it is just super slow.

Noah seems to be enjoying his newly decorated room, minus the fact that we can't get his stickers to stick properly to his wall. That's really what you get for trying to decorate on a shoe string. Creatively I'm currently trying to figure out ways to get them to stick better without making them permanent like wallpaper. So far I've found that the Creative Memories Scrapbooking Frosted Photo Splits are doing the best job. But just as you get one to stay up, another one falls.

Noah's gait trainer is also destined to arrive April 5th. I'm guarding my excitement as I hope he'll walk in it, but I don't know for sure. I remain hopeful that he'll find a way to walk in it and really have a mobile opportunity during the summer months when we can take his walker outside. I think we only have a couple of neighbors that know that Noah is special needs, so I'm sure as we walk around the block we'll have lots of questions since in a stroller he looks pretty much like an average toddler. There won't be much room to use the walker indoors due to our house design. Please continue to say little prayers that Noah continues to grow stronger, and that with each day he finds more freedom in movement. That he will find a way someday to walk and talk. Love,

Thursday, March 17, 2011

Happy St. Patrick's Day

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Spring is in the air, I can smell it and hear those delicate birds that seem to appear right at the sign of better weather on the horizon, and my rock garden is starting to come alive, baby crocus blooms already risen, just awaiting their tulip companions next to them. Which means I'm that much closer to planting Noah's special garden.

I already planted him some tomatoes, sweet peppers and herbs in the house last weekend. I pray they grow, I'm not great with seeds, I do far better with starter plants, but it was really important to start something from seed this year to me. To watch it grow, and help and nurse it along until it gets healthy and strong and ready to pick. I put Noah's feet in the dirt while I was planting. It didn't go so well, the soil was so soft out of the bag that I think he felt like his feet were sinking and disappearing. I keep trying to open his world to new sensory opportunities, but it was just too much too soon. He cried for a half an hour after wards and I felt terrible that I had tried to offer him a new experience that he simply wasn't ready for.

I found a really great deal on soil, Chris had to travel some distance to retrieve it, but it was nice that we got almost a $4.00 discount per bag, which is great when you're after organic certified soil with very little funds for projects. Chris came back and had to tell me that some soils even contain bat poop, like it was an important fact I needed to know right away. It sure gives a different meaning to what my grandmother used to call chicken high-high. I guess she would have called that bat high-high? In any event, I also found a sign that will read Miracle Garden on a stake that I can put in Noah's little garden. I think it will be the perfect little accessory. The garden will get lots of sun, partial shade and fabulous moonlight.

I also got confirmation that Noah's gait-trainer has finally made it off of suspended status and was approved. Yes I know I was ready to fall over myself when I got the call. I don't know if I'll be as lucky to get that news with a stander or new chair. Noah has also had his weighted blanket about a week. It makes him really hot, so we had to pack away the feeted fleece jammies, and opt for the cooler spring line. I can't say it's really made a huge difference in his sleeping patterns, but he doesn't hate it. But come summer we won't be able to use it at all since our home has no air conditioning and a window unit is not an option in his front facing room. We all roast sleeping on the top story of this home.

Noah's Weighted Blanket

Now that Noah is getting his gait trainer I suppose I need to look into finding a way to make the house a little bit more handicapped accessible. I really don't know where to start. I guess I see us a bit stranded. I anticipate there is no organization out there that covers the entire amount to come in and put in new floors and get rid of your carpet, and Chris and I don't have two pennies to rub together for such an endeavor, we're just doing the best we can to maintain a roof over our heads and get Noah all the therapy we can.

We also re-decorated Noah's room with little wall stickers and I think it turned out really cute. Noah seems to be calm in there when I change his diaper and clothes so I think he in his own way understands it's his space. I wish he had the ability to come and go and play in there as he chose, but he still spends the majority of his day on a blanket in the family room with me watching TV and doing therapy. The summer gives us a little bit more options because I can take him outside and lay him on his therapy mat and he can watch airplanes go by, watch for butterflies and hear the birds chirping. He also loves to watch the leaves move on our neighbor's massive tree.

Noah had a great St. Patrick's Day, (he gets that from my side...) He sported his green, even ate his Ella's Organic Kitchen Apple, Rutabaga, Spinach meal for lunch which even looked like liquefied shamrocks. He did well at pool therapy, he wasn't as grumpy today. Some of his therapists have encouraged me to explore a local hippo therapy place and cranial sacral therapy to assist Noah in his continued struggle to gain head and trunk control. However it doesn't matter if a doctor, or a therapist recommends any and all of these things, as insurance won't help us pay for it. That's such the tough part. You have experts in their field advising you to attempt these therapies, yet you can't afford them out of pocket. It lays heavy on my heart a lot. Because it gives you that inner failure feeling. His therapist gave me all the brochures on them. I haven't sprung it on Chris yet, as I'm not sure he can take much more, he's financially doing his very best to provide for his family in all the best ways. And in his heart I know he wants all we can do for Noah too.

I also researched this little place in Florida that does dolphin therapy. Although Noah is too young for it now, and lacks the head control I think he would need at this time. I envision that if Chris and I ever lucky enough to leave home it will be to some place for a type of therapy to help Noah. I most certainly don't see Hawaii, Italy, or New Zealand in our future. Nor do I think we'll get to experience typical vacation family spots. Special needs is life altering, and it alters every single thing in your lives.

Hopefully Noah will take a nap before the corned beef & cabbage dinner is ready, and we'll have a quiet night at home working on vestibular motion and occupational therapy brushing for tactile sensory stimulation. Just a another day in the life...


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, March 9, 2011

"The Label"

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Noah received his official cerebral palsy diagnosis this week: quadriplegia.

I know it's just a label. I'm sad that Noah will carry any type of label no matter what the verdict would have been, but at the same time I think I've done well not being crushed by the type of cerebral palsy. I've had two years to know that eventually a official label would follow. I admit I had hoped it would be diplegia or even hemiplegia. Somehow I had convinced myself that Noah's chances at sitting, crawling, walking and talking would be greater with either of those two. But it's just a title, a name, a word. It shouldn't define Noah's chances. I just have to keep reminding myself of that. That this does not mean that Noah's reached the end of all he might ever be able to do.

Noah had occupational therapy today. I was a bit disappointed that we were supposed to look into a stander today, although the equipment specialist did not show even though we had this date calendared for at least a month. No status on his gait trainer, no status on the cuddlebug that I was assured would take two weeks or less for us to see... I'm a bit disappointed that I feel like the ball is getting dropped once again. Which means more phone calls to make to see if I can get it all coordinated on Noah's behalf. Noah did well at therapy today. He still very much likes his swings and of course I have to take his portable TV along for a distraction. It's almost like his security blanket. It helps him block out other things he can't handle. He only gagged once at therapy today when he was touching the rope to the swing.

We also broke down and purchased Noah a weighted blanket. It arrived today. It's a rather small blanket for being $80, but they are all custom made for each child, and Chris and I are praying that it agrees with Noah and helps with sleeping hours. There are so many other things we need to purchase for Noah, this long list is growing and none of it insurance will go near. He uses this special life jacket with a hood at pool therapy, that we need to order, along with a nemo floaty (which I happened to spot at Target but didn't price). I know the life jacket will be a special order item. I'm trying to get Noah to drink from a sippee cup, but we haven't found one yet that is agreeing with him, and he doesn't want to drink sitting up, he still prefers to be laying down with a regular bottle. He also did really well with handicapped paintbrushes and things in sensory class, things that I don't have at the house to practice with. Things that seem small but that add up to hundreds very quickly.

We looked into litegait training, and our out-of-home therapy center no longer carries it, and families are renting them in home. However that is not an option for us. We cannot afford the $350 monthly, the $250 shipping and the $200 deposit. Not to mention we don't have a therapy treadmill to accompany it. Even if I could find a way to get the money, it sounds like a type of therapy that would be best supervised with a professional. So that one will be going on the back burner.

Noah has also given me the potty lip lately, a prelude before the cry. Which is new. Oddly many have asked me this week if I think Noah is cognitively on target for age two. I don't know. He has no words, no way to play age appropriately. I'd like to think he's just locked in physically and understands it all, but I don't know. I know that with quadriplegia they say there is a higher likelihood of mental impairments that also accompany the physical. I'm just trying not to think about it much. I don't want to overwhelm myself with emotions or thoughts of things that I have no control over. I just have to turn it over to God for now. The worry is exhausting and can even be paralyzing if you let be.

Chris built Noah's garden last weekend. It is exactly how I pictured it to be. Now I am searching to find some OMRI Certified Organic Dirt to put in it, so I can start his little seedlings. And hopefully I can make a little sign to hang from him garden titled Noah's Miracle Garden.

I've been so busy with Noah's appointments that I totally forgot that I needed to think about giving up something for lent. I received all these emails (late) as my computer has been down for sometime, with declarations of intentions for lent. I remember the days when I would give up buying a pair of new shoes... the days when things were beyond easy. I received an email from a friend who also has cerebral palsy declaring they had already given up everything; the ability to self-feed, dress, bathe or care for themselves, asking what more could God expect them to give up? I understand that feeling.. when you say how much more. As I grow older, and travel this special needs journey with Noah I see things differently than I ever did before. For me it's not about giving up chocolate, or my favorite latte, or quitting sweets or not eating white bread... to me it's a time to think about Heart, Soul, Strength and Mind. It's a time for reflection. To spend more time thinking about where I am with God emotionally, to think about spending ten minutes more a day in prayer, finding the strength and courage to persevere, closeting the tears and the pain and finding more faith, remembering to be a person that comforts others in times of great need. Giving up one desire for lent isn't going to bring me any closer to God... but hopefully a collection of other things will. No matter what God is always there, no matter how much I worry, stress, cry or fret over Noah he holds my hand through my day. I feel this silent encouragement, I am trying to listen for I need all the wisdom I can gather.

A Lenten Reflection
Give up complaining——focus on gratitude.
Give up pessimism——become an optimist.
Give up harsh judgments——think kindly thoughts.
Give up worry——trust Divine Providence.
Give up discouragement——be full of hope.
Give up bitterness——turn to forgiveness.
Give up hatred——return good for evil.
Give up negativism——be positive.
Give up anger——be more patient.
Give up pettiness——become mature.
Give up gloom——enjoy the beauty that is all around you.
Give up jealousy——pray for trust.
Give up gossiping——control your tongue.
Give up sin——turn to virtue.
Give up giving up——hang in there!


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Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, March 1, 2011

Cerebral Palsy Awareness Month

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Cp Awareness images
Cerebral Palsy Graphics

We completed the last class of Noah's sensory class for a while. He was a bit cranky today, but had moments that he seemed to be willing to sit without arching. Nothing like trying to hold a twenty pound two-year-old as he spring loads backwards faster than a malfunctioned toy! But he doesn't have a lot of ways of communicating and arching still remains one of his "hear me now," I'm mad techniques. I'll miss the moms and the kids. But I know I'll still see them periodically here and there. We all have some heavy lives and we come together for one hour a week, trying to better our children in some way. We have unspoken emotions that each understands, expressions on our faces that are so familiar from one to the next, exhaustion levels that seem to be endless. But each of us keeps going with our special needs kids.

I'm hoping the weather stays nice so Chris can help me build this garden I have brewing in my head. There's lots of things that seem to be brewing these days. Thoughts I keep categorizing in these mental folders because I don't have the time I need to nurse each and every thought at the same time. Things that might benefit Noah, things that we know he can't handle at this time, things we hope are available in the future for him. I never stop thinking about how can I make it better for him - easier.

March is Cerebral Palsy Awareness Month. I hope that each of you that come across Noah's blog whether you are directly affected by Cerebral Palsy in your own lives or whether you just come to read and support our little Noah and others like him that you will take time to remember that each special child or person with Cerebral Palsy not only this month, but always. I pray and hope someday there will be a cure, someway that we can heal the brain. It's not about accepting things as they are, it's wanting an easier future and life for all those that are challenged by this.

You can find some really great Cerebral Palsy Awareness gear and clothing at:

Cerebral Palsy images
Cerebral Palsy Graphics

(Remember to mute Noah's Music on the Right to watch video)

I will NEVER give up Hope on my little Noah. Believe... Miracles do happen to those who believe in them!


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.