Saturday, May 29, 2010

Just got home from the emergency room. Rob and I were taking a leisurely stroll through Geneva, enjoying the beautiful weather, getting Ragen out and about to hopefully help her forget how bad she's been feeling these past few days...stopped to have a glass of wine outdoors at a restaurant, started to see little red bumps appearing all over Ragen's arms, feet, legs and mouth. I opened her mouth to look inside and it was full of red and white bumps. Needless to say, we didn't stick around. Went to the emergency room thinking it was the measles, low and behold, she has Hands, Foot, and Mouth Disease along with her ear infection.....poor baby! Not much we can do for her except the usual Motrin/Tylenol combo and a ton of fluid. They said she more than likely won't eat anything or drink much (although we have to push the fluids...using a syringe if we have to) because her mouth is just full of little sores, like canker sores...YUCK! Unlike most viruses, this one likes to stick around for 7-10 days...Prayers for a quick recovery. I just want my baby girl to feel good for more than a week!!!

Friday, May 28, 2010

Feeling very frustrated and defeated this morning. We took Ragen to see her ENT yesterday to see what's going on with her ears and all these ear infections. He looked inside and said everything looked fine, they tested her ear tubes to make sure they were open and all was fine. He said if she got another ear infection she will need another surgery to see what's going on, so all was good....we thought....

Woke up this morning and her ears are full of puss and brown, thick, sticky gunk! She is in pain and viola, another ear infection. Here goes ear surgery #5....

Wednesday, May 26, 2010

Well it's the second to the last day of school for Ragen. Rob and I are heading over to the school to watch her swim. They are inviting all the parents for the last day of swimming to come watch the kids. Of course we will take lots of pictures and video! We can't have too much documented as a proud mamma and pappa of a gorgeous girl! Rob will be taking me to Denver on a business trip next Tuesday (it's FREE! Free is good right now!) and I'm really anxious. Ragen has AT LAST really bonded to me. I've waited a long 3 1/2 years for her to connect and bond to me as her mom and VIP. So it's finally happened. She lights up when I come into the room and gets really excited. She walks fast (can't run just yet...only started walking a few months ago) towards me when she sees me. She reaches up for me to pick her up all throughout the day and just the other day she said "Hi Mamma"...Oh how I've longed to hear those invaluable words! My heart is overjoyed and full! But now I am left with a pit in my stomach thinking of her not having me around next week and me not having her around...her and I are two peas in a pod and I want to cherish every moment. She will be in good hands, I do not worry about that...I just have the fear that every mom and dad to a child with autism have...will she forget me and regress?? I guess I can't win. I can't take a break, and I can't be without my girl...

Wednesday, May 19, 2010

Ragen had her first Special Olympic program at school was a terrific experience...these are the moments that parents live for! Ragen carried the torch for the opening ceremonies, with a little help of course! We were so proud! I couldn't help but shed a tear along with another one of Ragen's classmate's moms who rushed up to congratulate me while making the comment, "why did I wear make-up this morning!?" as we were both in tears with pride for our kids. These kids work so hard at what you and I (and most people) would seem so miniscule...again, my eyes have been open to another world and my heart has soon followed...what a wonderful world having Ragen has exposed me to! I'm also in such awe at how hard the teachers, therapists, and aides work day in and day out with these kids...they work even harder than the kids do. Just watching them this morning made me exhausted! Teachers are so often unappreciated, especially these teachers who work even harder than most. If only we could give them the recognition that we give actors and professional athletes...what a world this could be. It's all about the "world's" priorities...I'm looking forward to a world that has it's priorities in check. Ragen's teacher, her aides and therapists are the true athletes and real angels walking on earth.

Special Olympics Young Athletes 2010

Getting ready for one of our "firsts" this morning. Ragen has her first Special Olympic Young Athletes program at school today. We're so excited! I just received an email from her teacher stating that Ragen will be carrying the torch for the opening ceremonies...I can't wait! Rob and I will be one proud mamma and papa! I wish you all could come be a part of this with us. I'll be sure to take photos and video and publish them later this week. This is the kind of stuff that makes being a parent priceless!

Tuesday, May 18, 2010

Just got home from the orthodopedic doctor. Rude awakening...Ragen's custom AFO's are going to cost us $2500. Something we did not expect! They require all patients to pay up front because insurance companies are notorious for saying they will pay and then renig. Which is something Rob and I are currently going through with our insurance company not wanting to cover the cost of a stroller that they originally approved. Classic insurance company move! This is a major reason why we personally are becoming an obsolete middle class. We make too much money to qualify for any medical aide or government programs, but can't afford the constant co-pays, and what our insurance doesn't cover or decides not to pay. We are being swallowed up literally! I'm so frustrated and to think that Ragen's only 3 1/2...we have such a long way to go...I'm just sick about this..."God will provide, God will provide, God will provide...."
Well it seems sickness does not want to leave this house...but the person that is sick this time has left the house. Rob may have the flu. He is in agony with the pain in his hips...I hope and pray that soon he will get the hip replacements that he so desperately needs. Another financial obstacle yet to come. He is in Maine today for business and I feel so bad for him to be away from home and not feel well. I know all too well what it's like to feel ill (I seem to get the flu at least 2 x's a year with Ragen) and I would hate to be traveling. He'll be home late tonight so at least it's a quick trip. Say a little prayer for a quick recovery for whatever might be going on with him. Ragen had a very successful dentist appointment yesterday. She was a trooper! Little did we know, her dentist goes to our church and volunteers in our Promiseland...he was actually in Ragen's room on Sunday he already knew who she was and was excited to see her! He was great with her....patient and gentle. I feel so blessed to have the team of doctors that help take care of Ragen. There are so many, and I am so grateful for them all. To live in an area that has some of the top docs for special needs in the country...what a blessing! We're off this afternoon to see her new orthopedic doctor. She will be getting fitting for new leg braces as the old ones were worthless. Lesson learned, not ALL doctors know what they're doing. These braces unfortunately will go up her leg to her knee. We're not looking forward to her having to wear plastic on her legs during the summer months. But it's a necessary evil I suppose. She needs them desperately to help prevent any possible complications with her bone and muscle development. So we'll see how she does with them. She's such a trooper with all that she goes through...she may cry for a minute or two but a smile immediately follows...always...I wish I could do that!

Monday, May 17, 2010

It's a Signing Times kinda day....rainy and dreary...where's summer already? Ragen is still also getting over another sinus infection and ear infection, but seems to be much better this morning. We (well actually just me) are gearing up for Ragen's first dentist appointment at 11:00 this morning. Not looking forward to that whatsoever! She hates having doctors look in her mouth. So we'll see what tricks he has for doing this. He's either got some fabulous tricks or he's missing some fingers as this dentist sees a lot of kiddos with special needs. Tomorrow she gets fitted for AFOs. She used to wear the SMOs but the ortho doc said they were doing nothing for her, so we're hoping the AFOs will do the trick and give her more support and proper posture. Then on Wednesday she has a Special Olympics event at her school for the kids ages 2-7. "Opening Ceremonies" are at 9:00 am and all the parents are invited. Rob and I of course will be there! This is when they start to get the kids prepared for the SO when they are age elligilbe. They will give us parents ideas for physical activities we can do with our kids...we're really looking forward to it! Busy week ahead so far...I'm hoping we can all get healthy and stay that way!!

Wednesday, May 12, 2010


May 2010


Boy, Born March 3, 2007
Eli is so cute! Look at that big smile and those giant blue eyes! Eli was born with Down syndrome and Atrial Septal defect (ASD), a heart condition that has not required surgery. He has suffered through frequent bouts of pneumonia. He says several words, uses gestures, and can follow simple directions. His report states he continues to make progress in all areas of his development. Eli is receiving speech and physical therapy. He walks with assistance.
  • Single parents and married couples may apply
  • Parents must be 30-48 years of age
  • No more than 3 children at home, preferred
  • Two trips are required.
  • Both parents must travel for the first trip until court (approx 14 days)
  • Only one parent for the second trip to complete the immigration process (also 7-14 days)
I have $1055 in my grant fund towards the cost of my adoption

Tuesday, May 11, 2010


...if any of you that don't know what it's like to have a child with special needs and would like to know...or you do and want to laugh (and cry....) please read...this is sooo true!
by Christina Shaver

Regular moms tell their kids to wake up and get dressed in the morning. And they do it.
Special needs moms put on battle gear to get our kids ready to start their day.

Regular moms ask their kids if they brushed their teeth.
Special needs moms prompt, “Brush your top teeth. Brush your bottom teeth. Did you get the sides? Open your mouth. My God, give me that toothbrush! You’ve left half your meal in there!”

Regular moms wave goodbye as their kids run off to catch the school bus.
Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.

Regular moms judge other moms when kids have tantrums in stores.
Special needs moms say to themselves, “Hmm, I wonder which disability he has?”

Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.

Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.

Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.

Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they've read.

Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups.

Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums.

Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.

Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.

Regular moms have time to cook a full dinner every evening.
Special needs moms will never admit how many times we've picked up fast food.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work.
Special needs moms...well how about that? Some things do stay the same!
(Just kidding dads, we know you do your part!)

Regular moms worry about fat and sugar in their children's diets.
Special needs moms worry about gluten, casein, oxalates and have a working knowledge of (FDA approved) food additives.

Regular dads spend a week teaching their sons to pee in the potty and maybe a month teaching them to poop.
Special needs dads keep trying, sometimes for several years.
--From Michael

Regular moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.
--From Elizabeth

Regular moms have the numbers of their friends programmed into their cell phones.
Special needs moms have the numbers of their child's specialists programmed in theirs.
--From Kate

Regular moms’ kids are mildly afraid of the dentist.
Special needs moms’ kids are so terrified, 9 out of 10 dentists will ask them not to come back.
From Judy

Regular moms get annoyed when their child won't stop talking.
Special needs moms would do anything to hear their child utter one word, 'Mom'.
--From Elizabeth

Regular moms cringe when their daughter misses a step or gets confused during a ballet recital.
Special needs moms cry a special kind of tears as their child painstakingly holds up one foot while leaning on a chair and says, “Look, mommy, I’m doing ballet.”
--From Kimberly

Regular moms rely on children's vitamins and common cold medicines to meet their kids health needs.
Special needs moms are busy being medical detectives using medicines and supplements a pharmacist can barely pronounce.
--From Melanie

Regular moms budget for new clothes, a new size every season for their children.
Special needs moms know the anguish of three winters in the same size.
--From Heather

Regular moms drive their kids to the pediatrician for their annual exam.
Special needs moms arrange for an ambulance to transport their child to their annual 12 specialist event that lasts a week at children's hospital.
--From Elizabeth

Regular mums complain their kids are under their feet during the summer holidays.
Special needs mums hope to find a school where their child can stay for longer than a term (semester) before being thrown out.
--From Laurie

Regular moms send Christmas cards to their friends and family.
Special needs moms send Christmas cards to friends, family AND the medical team and specialists that helps take care of their child.
--From Kate

Regular moms show up to their kids' activities.
Special needs moms get to work prompting and herding their child in each activity.
--From Ann

Regular moms rarely get calls from their child's teacher.
Special needs moms expect it's a call from the school everytime the phone rings.
--From Anonymous

Regular moms worry about their child being picked on in school.
Special needs moms know their child will be discriminated against their entire lives.
--From Elizabeth

Regular moms are on a first name basis with other moms in their neighborhood.
Special needs moms are on a first name basis with their child's pediatrician, neurosurgeon, gastroenterologist and other specialists.
--From Kate

Regular moms bring their kids to the doctor without any advance preparation.
Special needs moms have prepped their child all week with books and practice getting a shot. They come in armed with favorite CDs and children’s books and it’s still a traumatic experience for both child and mom.
--From Judy

Regular moms forward funny mom e-mails to each other.
Special needs moms can only send this list to other special needs moms--regular moms would be offended if we suggest they don't understand what we deal with everyday.

Regular moms occasionally worry about one or two allergies.
Special needs moms have memorized the top 75 allergens, preservatives, chemical additives and toxins.
--From Michael

Regular moms hunt for the best clothes bargains and trendy styles.
Special needs moms hunt for that one manufacturer who makes clothes that fit our child's fine motor or sensory needs.

Regular moms' stress levels raise from a 3 to a 10 if their child needs stitches or tubes in their ears.
Special needs moms' daily stress levels are already at an 8 so stitches or tubes in ears can actually be a step down from the day to day stresses.
--From Kate

Regular moms look forward to their children going off to college.
Special needs moms do not look forward to deciding whether or not to put their children in state run homes they become adults.
--From Elizabeth

Regular moms know their child will eventually pick up reading in their own way.
Special needs moms must tackle reading skills with a sense of urgency and with all the research resources they can muster.
--From Jeri

Regular moms are asked to chaperone for field trips.
Special needs moms are required to be there just so their child can go on the field trip.

Regular moms put their children to bed and get a good night's sleep.
Special needs moms monitor CPAP machines and masks, Apnea monitors, suction tracheotomy tubes, oxygen tanks, reset pulse oximeter alarms, and feed their children through feeding tubes through the night.
--From Elizabeth

Regular moms try to get their child toilet trained by preschool.
Special needs moms try to get their child toilet trained by high school.
--From Nancy

Regular moms take their child's developmental milestones for granted.
Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.
--From Kate

Regular moms agonize with their child if he or she doesn’t make the elite soccer team.
Special needs moms would cry tears of joy to see their child play soccer, just once.
--From Kimberly

Regular moms ask the local babysitter to watch the kids on date night.
Special needs moms call a nursing agency when they haveto leave her child home for emergencies only.
Ragen has now begun her 7th ear infection in less than 4 months, accompanied by another sinus infection. This is exhausting. Rob and I are going to talk about seeing a specialist at Childrens. I trust her pediatrician for the most part, but this is getting ridiculous. I feel so bad for her. I just wish we could catch a break...

Monday, May 10, 2010

The BEST Mother's Day Present EVER!

"Future's so bright, she's gotta wear shades!"

Sunday, May 9, 2010

Some Mothers Get More by Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what
sex the baby is. They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a
round head, rosebud lips, button nose, beautiful eyes and satin skin. She
wants a baby so gorgeous that people will pity the Gerber baby for being
flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps
right on schedule (according to the baby development chart on page 57,
column two). Every mother wants a baby that can see, hear, run, jump and
fire neurons by the billions. She wants a kid that can smack the ball out of
the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants. Some
mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a
spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away. It was just like the time at
recess in the fourth grade when you didn't see the kick ball coming and it
knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even
years later, took him in for a routine visit, or scheduled her for a well
check, and crashed head first into a brick wall as you bore the brunt of
devastating news. It didn't seem possible. That didn't run in your family.
Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies.
It's not a lust thing, it's a wondrous thing. They appear as specimens
without flaw -- muscles, strength and coordination all working in perfect
harmony. Then an athlete walks over to a tote bag, rustles through the
contents and pulls out an inhaler.

There's no such thing as a perfect body. Everybody will bear something at
some time or another. Maybe the affliction will be apparent to curious eyes,
or maybe it will be unseen, quietly treated with trips to the doctor,
therapy or surgery. Mothers of children with disabilities live the
limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me. How you
lift that kid in and out of the wheelchair twenty times a day. How you
monitor tests, track medications, and serve as the gatekeeper to a hundred
specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, the well-intentioned
souls explaining how God is at work when you've occasionally questioned if
God is on strike. I even wonder how you endure schmaltzy columns like this
one -- saluting you, painting you as hero and saint, when you know you're
ordinary. You snap, you bark, you bite. You didn't volunteer for this, you
didn't jump up and down in the motherhood line yelling, "Choose me, God.
Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you. From where I sit, you're way ahead of
the pack. You've developed the strength of a draft horse while holding onto
the delicacy of a daffodil. You have a heart that melts like chocolate in a
glove box in July, counter-balanced against the stubbornness of an Ozark

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.

Happy Mother's Day.

Thursday, May 6, 2010

We went to the cardiologist this morning... she's all good til next years checkup!!! Great news!

Tuesday, May 4, 2010

God Sent to Me an Angel

Written by Paul Dammann

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

Monday, May 3, 2010

This is what happens when a child is left unattended on a school bus with her leftover lunch....Pasta anyone!?