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:

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!