Tuesday, December 23, 2008

Look What I Can Do!!

I haven't taken a video of Noel walking yet, but I did want to share her new trick with you.
Thanks to the help of her vent stand she can pull herself up to stand!


Monday, December 22, 2008

Prayers!

Please pray for Emerson and the White family. She is very, very sick again and she can use all the prayers possible. http://www.cotaforemersonw.com/node/35

Monday, November 17, 2008

Noel's Birthday!

Happy Birthday Noel!!
Wow I can't believe that she's already two! It's amazing how fast the time flies! I was going to do a photo story of her first two years, but unfortunately with our weekend trip to Denver I have run out of time! On a great note, her Muscle Clinic appointment went great! I got my lingering question answered if Noel will continue to get better or if she might start to digress. The answer is they think she will continue to improve and they think that YES she WILL WALK! That is so exciting! She will still get a motorized wheelchair, which should be here soon, because even when she is able to walk she will probably tire very easily. So I have to say starting out her second year of life looks so promising, we are worlds away from where we were a year ago today!
Thanks to everyone who has been here for us on this journey!
Tina

Tuesday, November 11, 2008

Noel

Here are some videos of Noel Cruising at her friend Connor's Birthday party, in the last video Connor was pulling her vent for her while she rode on the car, what a gentlemen!!

Sunday, November 2, 2008

Some days...

Some days it all catches up with me, some days I realize just how much I deal with and how much I’ve had to learn. Some days I grasp the fact that I am a 24 hour nurse; I’m on call all the time, ready to resuscitate my patient any time any where, my patient, my daughter. Some days I think wow I really am a respiratory therapist, I know more about this ventilator then some of the professionals that come into contact with it. And some days I realize that I’m sad. Today is one of those days where I realize that I am sad. It’s in the little moments, watching kids play at the mall, drink a bottle or run and shriek through the house that awakens my sadness. Will Noel ever be able to play like other kids, will she be able to eat on her own and the one that has been the hardest recently WILL SHE EVER WALK? It’s a question that I thought I knew the answer to before January and that answer was no. Now I don’t know; she is doing so much better but unfortunately her underling muscular condition is a very grim reality, her body’s muscles are wasting away. But has she gotten better? Will her muscle continue to get better? Will she walk? I thought I was ok with the fact that she may never walk, but am I? Can you ever really be ok with the fact that your child won’t be able to dance? Run? WALK?? The answer is no, I don’t think it’s something that you can ever just get over or not let bother you. I am so grateful for how far Noel has come and what a perfect angel she is, it’s just some days; some days are a little bit harder than others.

Saturday, November 1, 2008

Happy Halloween!

Here are some pictures of our little bumble bee!

Below: Getting ready to Trick or Treat


Noel and Daddy ready to go,
Noel is even holding her own pumpkin!


Here we are at the mall, there are so many things to look at...
this is so much better than the zoo!


Ok mom I'm done taking pictures,
just let me get to that candy...

Finally, just me and my Candy!!
Alright this is just a funny picture, if you ever wondered if kids really will put plastic over their mouth and nose, wonder no more... ahh the things you can do when you breath out of your neck!






Friday, October 31, 2008

Frugal Halloween Wings


Ok so I’ve been on a frugal a kick for a while and you know what it actually pays off! So for Halloween this year Noel is going to be a bumble bee (thanks to a hand my down costume form a friend). I realized she needed wings, I looked at the store and they’re really expensive seeing as how a two year old is only going to keep her wings on for a few minutes. I started to think about how I could make wings myself and this is what I came up with:
So I started with a mesh laundry hamper,

And some black sparkle yarn
(Thankfully I had some left over from a scarf I never made!)

Then I cut off the handles, sewed the yarn around the outside of the basket,
cinched the wings in the middle, and reattached the handles for arm holes.


And whola Home made wings!!
(I'll put more pictures when she has her whole costume on.)


They were super easy to make and I felt like I made a some what home made costume!

Tuesday, October 28, 2008

YES on 51

Vote YES on 51
Please, please vote yes on 51. Now I’m not telling you who to vote for Barak or McCain, either way I will still love you the same, but please take the time to read what Amendment 51 is all about. To break it down there is a wait list for people with developmental disabilities; it can take months and many times years to make it to the top of the wait list. Which means when people are waiting on the list they are not receiving any medical coverage or any therapies.
The fact that Noel ended up with a trach and vent was not what we ever thought would happen, but honestly in some ways it was a blessing in disguise. Otherwise she would have had to be on the wait list for at least 18 months, she would have had no medical coverage for that period of time; Scott and I would have had to pay out of pocket more that $3,000 a month for her feeding supplies alone, that is almost twice as much as our mortgage. So that would have meant in that time alone we would have had to pay $54,000 just for her to eat! In all Noel’s medical bills cost more than $80,000 a year and that doesn’t even include doctor’s visits, therapies or hospitalizations. The things is that Noel does receive the funding she needs for her medical costs, but there are thousands who do not because they are waiting. Don’t you agree that the government should help those who through no fault of their own were chosen to lead special lives?
Now to show you the actual cost: a $12 lunch would cost you $12.02; 2 cents could help those with developmental disabilities. If someone asked you to donate 2 cents wouldn’t you? Well that is all that Amendment 51 is asking so please respond with YES!
"Amendment 51 is a small price to provide vital services for children and adults who, thorough no fault of their own, face tremendous burdens every day just getting by.”
For more information please visit:
www.endcoloradowaitlist.org

Thursday, October 23, 2008

To my "Sisters"

Thoughts of a Mom
By Maureen K. Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy . We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Sunday, October 12, 2008

Please Pray

Please pray for dear Emerson, she isn't doing good today. She has another infection and she coded (her heart stopped) today. She is stable now, but she is still not out of the woods. I just ask that you will lift up Eme tonight in your prayers, she is such a fighter and she has come so far, she just started walking on Friday. Also please say prayers for Erika, Eme's mom, I can't even imagine what she is going through right now, so please pray for strength and grace for both of them. We also need to pray for the whole White family in this very hard time.

Friday, October 3, 2008

Home at Last

For those of you wondering, they're home? What about Kids Street, well it turns out that in theory Kid Street was going to be great, but in real life it was just too hard. We had to drive two hours a day, load up all of Noel's equipment every day, and wake up at 5 am and not get home until after 5 at night. It would have been wonderful to take her there if we lived closer, but with the housing market so horrible we realized that we wouldn't be able to move for a long time.
We decided that it would be best for our family if we moved back home for now until the housing market picks back up and we can move.

So we finally made it back home, it was only a nine month trip to Denver! It’s amazing how things have changed from then to now. I feel like I left home with a baby and came back with a toddler. We originally went to Denver for a fundraiser walk for the MDA; we never made it there because the first morning of our trip we were in the E.R. of Children’s. I still remember when the triage nurse went to take Noel from me to weigh her and I had to warn her let me do it because Noel was like a rag doll.



Then she was 14 months old and just barley 16 pounds, she couldn’t sit on her own, she couldn’t bare any weight on her legs, she couldn’t make noise, cry or even talk, we were working on two signs with her: More and all-done, neither of which she knew how to say, she was so complacent with life and now looking back she was barley able to interact with the world around her.



Now she is almost 23 months old, over 22 pounds, she sits all by herself and she even spins around in circles, she can standup all by herself for short intervals, she can talk around her trach, she knows more then 25 signs, and she is so interactive with the world around her.



When we first found out that Noel had MD, I came to terms with the fact that she may never walk and honestly from how weak her muscles were I never thought it would be possible. Now it’s not if she will walk it’s when. I know it was really hard on Noel and all of us when she got RSV but honestly it really was a blessing in disguise, it enabled her to be on a vent (something that her body could have probably used all of her life) which provides her body with the oxygen and ventilation needed to grow, develop and even heal her muscles. I can’t even imagine where Noel would be right now if she never got RSV, she would probably still be barely making it to survive. All I know is that God defiantly has a plan and a purpose in all the things in our lives!







Here are some pictures of Noel from our recent trip to the Zoo!










Above: Noel is looking at the Monkeys






Above: "Wow Mom that Monkey is really Big!"









Above: Noel and "Aunt" Kat saying Cheese!




Above: Mommy and Daughter enjoying the day!





Here are some other pictures of our recent trach picnic:


The Trach Family (unfortunately we are missing some members!)

Noel and Marissa sailing away at the Children's Museum

Milo and Noel, she's in awe that he has a trach too!

Noel melting down, she knew it was picture time, Marissa and Milo are all smiles!

Friday, September 5, 2008

On the Road Again

Well Noel is traveling again... not alone of I'm with her of course. This time we have traveled almost 650 miles to Kansas City, unfortunately we have come for a funeral. My cousin Matthew, who was a year younger than me, lost his life early last Sunday morning in St. Louis, MO. He left behind a wife and a beautiful daughter who is only six months old. So we came to be with our family in this very hard time. (I have to say as far as traveling with a trach vented baby I might be becoming quite the expert.) I would truly appreciate if you would keep my family in your thoughts and prayers this weekend.

Thursday, August 28, 2008

Kids Street

So Noel is scheduled to start Kids Street (a special needs day care) in a few days, up till now I have been really excited. I’ve been thinking of all the great things she’ll be able to do, she will get to socialize, get therapy and have experiences that don’t just include me. Well last night I could barely sleep because I was overcome with such a feeling of worry. What if she gets sick, what if the nurses don’t suction her and she plugs off, what if she is crying and she get’s ignored because no one can hear her? I suppose that some of the worry is the same any mother would feel, but for me it’s hard to let someone else be responsible for Noel. Since the day she was born I have been her primary care giver, sure there have been times when I left her with people I really trusted, but that’s only been four people in her whole life (thanks Alissa and Heather!). I hope these are just jitters and not my motherly intuition telling me that this isn’t where she should go. I was thinking we just have to take it one step at time, if it doesn’t work for us we can always try something else.

Tuesday, August 12, 2008

It's amazing the feeling that comes with being understood. We had a picnic on Sunday with some amazing families who's children also have trachs. I felt so normal for those three hours, I didn't have to explain anything to anyone I was just understood. All the kids had lunch together, tubes and formula was on the menu. I was even able to share my homemade formula recipe with the other moms, something that is usually useless in any other conversation. This was my first experience of a support group and now I understand why they are so important:
1. Sometimes it seems like not even doctors, the ones who are suppose to know everything, don't truly understand what you go through or what you're trying to tell them, but when you get around other people who live what you live day in and day out they can't help but understand you.
2. I think it helps to ground all of us and help us reflect on the journey we walk everyday. I looked around at all the other families there with so much respect and I feel honored to be a part of such a unique group of people. I also feel so blessed to be able to meet all these incredible children, they truly are special and you can't help but notice when you get to be around their sweet spirits!









Friday, July 18, 2008

Home Sweet Home


Wow we have already been home for a week now and what a week it's been! Noel has been doing great, besides not sleeping to much but I can't really blame her with all that's going on. We have been blessed to get to visit with all of our many friends here in Grand Junction, I didn't realize how much I missed home until I finally stepped foot in the door after such a long time. I feel like a completely different person though, I never knew how much my life could change in such a short time. Noel is a different person too, being here makes me realize just how much she has grown and changed since she's been vented. It's amazing what proper ventilation can do for a person! Here are some of the pictures of our trip so far:

Below: Noel's is palying at the mall on an airplane, she liked it so much she didn't want to get down!




Here is Noel and her Grandma (Scott's mom) at our friends lake, Noel wasn't to fond of the water, but she had fun anyway!






Noel would rather play in her duckie tub instead of the lake, we couldn't
get her out of here either!

Here is Noel in her carseat saying "Hi" to everyone!

Monday, July 7, 2008

Going Home?? Can it be?

Well it looks like Noel and I will finally, after 7 months get to go HOME!!! Well it might just work out that this weekend we will get to go home for a short visit, or good bye! I'm so glad, I've secretly wanted to go home for a long time, but I haven't that it would be possible. So we'll see if it works out or not but for now even just the thought is very exciting!

Thursday, July 3, 2008

Tossing and turning

Last night I had an epiphany... Noel can toss and turn on her own. I know this may sound like no big deal, but I started to think that it was just in April when her nurses or I would have to reposition her every three hours so that one side of her body wouldn't fall asleep. Now she is able to reposition herself whenever she feels like it. I realized this last night when she kept tossing and turning and kicking me. She finally woke herself up around 11:30 pm and because of an irritating diaper rash she stayed awake until a little after 4:00 am. When you're up that late you really start to think of things, sometimes it's easy to look over all the little improvements Noel is making in the busy day time but at night I have more time to reflect. It is absolutely amazing how much Noel has improved since she has been on the Vent, I can't even imagine where she'll be in six months form now, she's already doing things that at one point I thought were impossible. Sometimes it seems like the vent has opened up a whole new world of possibilities for Noel!

Tuesday, July 1, 2008

Fun in the Sun




Noel had a great time swinging with her cousins!

Wednesday, June 25, 2008

Recent Pictures of Noel






These are some recent pictures of Noel!




This was one of our last days in the Hospital she's blowing kisses and saying "Bye Bye!" To all the wonderful people she met there!









Here's Noel and her cousin Kristen, She's so glad she has friends so play with now!!









Noel, asleep in her high chair... eating is tough work!

Noel and her daddy, she loves him so much!!


Here is Noel and her very special friend Faith. These two were neighbors at the Hospital and now the two of them share a very unique bond! ...Tubes!!!

I decided to start a blog page for Noel instead of her carepage, I can add more posts and Pictures this way I hope you all enjoy Noel's new page!

Noel's Story

Noel’s Story

We were first blessed with our little angel on November 17, 2006. Noel Marie Way came into this world without a sound, just an undeniable peace and willful soul. She was delivered through C-section at St. Mary’s Hospital in Grand Junction to say the least this was not how we had planed nor how the books said things were going to happen, everything changed in an instant. Noel was born with an almost complete lack of muscle strength, her doctors told us she was “floppy” that was all they knew. Due to her almost complete lack of muscle strength she was barley able to breath on her own. After two days in the Neonatal Intensive Care Unit or NICU of St. Mary’s and a multitude of tests it was decided that the best thing to do was to fly her to Denver to the Children’s Hospital so that hopefully there they would have some answers for us. That was the beginning of a very hard journey for the three of us.
Noel then spent the next two weeks in the NICU of Children’s and after an array of genetic, metabolic, and every other kind of test that I couldn’t even try to pronounce we were still no closer to any answer than we were when we had first sauntered down the long uncertain halls of the hospital. After that two weeks Noel was finally sent home back to Grand Junction on oxygen and a temporary feeding tube, however it was advised to Scott and I that she may need a more permanent feeding tube and a muscle biopsy one day. Since both of those involved surgery and deep down in our hearts we thought nothing was really wrong, that it was just a rough delivery, those two things were the last two things we wanted to ever have to think of. Within a week of her being at home she was off of the temporary feeding tube and needed minimal oxygen, things we starting to look the way we had always thought they would go in the first place. However, having a mother’s intuition I always knew there was something else inevitably wrong.
Days passed then weeks and soon a few months had gone by and my intuition proved me right; Noel ended up enduring both of the surgeries we had dreaded her having. So during April of 2007 she received a Gastric feeding tube, G-tube, and underwent a muscle biopsy. Then in May of that same year my intuition came creeping upon me again and again I was proven right. Her biopsy results came back with the diagnosis of Congenital Muscular Dystrophy. Muscular Dystrophy is the degenerative wasting away of the body’s muscle tissue; the diagnosis of a five month old baby to have this condition is almost unheard of. With that diagnosis our hopes of everything one day becoming “normal” were shattered. That day our life changed…again, this time it was forever. Suddenly, new words came into our vocabulary, words like wheelchair, “special needs”, and more surgeries.
In time we came to terms with the reality that our lives were going to be different than we had planned. After months of assorted therapies, doctor’s visits, and hospitalizations we had finally gotten to the point where we had become accustomed to our version of normal. Little did we know things were about to change yet again…again. We had planned to attend the annual Muscular Dystrophy walk in Denver so we were staying with family when I realized that Noel was in respiratory distress due to the high altitude and I knew she needed oxygen. As we left for the hospital I started making an overnight bag of shampoo, toothbrushes, and a change of clothes my mom asked me “ what are you doing” I responded with “ trust me mom, I have done this a time or two” when you have a special needs child it is never just a short trip at the hospital. On January 16 2008 we drove down to the Children’s Hospital emergency room with the thought that we may have to stay a night, little did I know this would be the longest hospital stay we had endured. Noel turned out to have RSV, which is a respiratory virus common in many newborns and young babies. It is a virus hard to fight for “normal” kids but can be life threatening for kids with weakened immune systems, like Noel.
This trip to the emergency room resulted in six weeks in the Pediatric Intensive Care Unit where Noel spent five of those weeks intubated, which meant she had a tube down her throat to help her breath. Before they first intubated her the doctors had made it very clear to us that once she was intubated it would be extremely hard to ever take the tube out. Because of her weak muscles her body had always worked so hard to get oxygen in the first place that once her body was reliant on the machine it was almost impossible for her to breathe without it. That was when we heard another new word added in to our ever growing vocabulary of medical terms, tracheotomy. So after five weeks and several attempts to take her off of the breathing machine the word we had learned became not just a word but another decision we were going to have to make. Her surgery was scheduled only hours after we had made the decision to go ahead with the tracheotomy and our life with a trach-vented baby began. The following two months in the hospital was spent in learning the ins and outs of trach care, how to operate a ventilator, and even how to resuscitate our own daughter. The three months we spent in the hospital seemed like three years at times but along the way our family grew and we were blessed to meet new families struggling with the same obstacles as us.
On April 7 2008 Noel was released from the hospital to finally come home. However, we are not able to go home to our home in Grand Junction. Due to the 24 hour care required for Noel and the lack of available home nursing our only option was to stay in Denver with family that could help in the everyday routines of trach-vented life. As things stand now we still do not know when we will be able to come home or how we would even manage to get there as Noel and her equipment just won’t fit into my two door Honda Civic. Scott and I are forced to live apart, his job is in Grand Junction and Noel requires more care than is currently available there. Pieces of our hearts are still left, and will always be, in Grand Junction and the hope we have to be able to finally return home some day.