Tuesday, December 23, 2008
Monday, December 22, 2008
Monday, November 17, 2008
Tuesday, November 11, 2008
Sunday, November 2, 2008
Saturday, November 1, 2008
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
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:
They were super easy to make and I felt like I made a some what home made costume!
Tuesday, October 28, 2008
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:
Thursday, October 23, 2008
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
Friday, October 3, 2008
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!
Above: "Wow Mom that Monkey is really Big!"
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
Thursday, August 28, 2008
Tuesday, August 12, 2008
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
Here is Noel in her carseat saying "Hi" to everyone!
Monday, July 7, 2008
Thursday, July 3, 2008
Tuesday, July 1, 2008
Wednesday, June 25, 2008
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!!!
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.