A Little of Everything – Birthday Week Continues

Would birthday week be complete without a little bit of the tough stuff that Little Angel occasionally deals with?  Last night she had another sleep test.  We are hoping the results will mean that she doesn’t have to have oxygen at night anymore.

I Apologize in Advance….

So before I post what you all are wanting to see, pictures, let me list some excuses…

• 4 days of training in Phoenix for my work
• 3 Cranial Bands Helmets for Little Angel
• 7 trips to Fit Well in Salt Lake to try and get try and get the helmets to FIT WELL (GRRRRRRRRR)
• 1 looong letter to Altius Insurance asking them to reconsider denying payment for Little Angel’s helmet
• 7 four hour classes each Wednesday Night
• 4 intense quizzes, 5 research papers (6-7 pages each), and 4 group projects
• 1 AA meeting
• 1 paper on the AA meeting
• 1 nine year old turning ten
• 1 American Idol Microphone for said 10 year old’s birthday party
• 1 birthday party for said 10 year old
• 1 trip to Idaho and a look at Austin’s newly laid headstone

I am sure there are more.  Needless to say, it has been a busy couple of months.  Things with our little Angel are going great.  She is such a cutie.  She has recently learned to wave and as usual is almost always all smiles.  We have been able to take her out where ever we go since the end of April.  She loves the new world she is experiencing and especially loves being outside.
She has had her helmet in one form or another since the end of March, but the time did not officially start until the first part of May.  To say this helmet experience has been a nightmare would be an understatement.  Our insurance denied the claim to pay for it, stating that it was not functionally necessary.  Jodi put together a multiple page (8-10 pages) letter full of studies and other information that we sent to them in our appeal letter.  They have denied that as well so we are appealing the appeal, but are doubtful it will do anything.  Some have suggested we get a hold of a news station so that they can raise awareness of our insurance’s decision.  We have not decided to do that yet, but are leaning against it.  I never even thought about the added cost that kids with special needs and unique situations cost before I had to deal with it.  I must say, it is worth every penny.
I wish the nightmare would only include the insurance.  The helmet company can’t seem to get it to work right on Little Angel.  She had sores on her head for most of April as they went through 3 different helmets trying to make it work.  They just have not fit right, and are constantly in her eyes.  Finally on Friday, Jodi called them she had had it.  She wanted our money back.  They told her to give them one more chance.  They were willing to pay for our gas, and had us talk to a different technician.  The changes seem to be better, but the jury is still out as to if this helmet is fitting right.  It seemed in her eyes again today so we will see (no pun intended).
Now let me go find some pictures…

Ask Heavenly Father

I realize it has been a long time since I have updated the blog.  I don’t know why, but every time I have started typing, I have not felt like writing anything.  Chalk it up to writers block.  I thought I would give you all (at least those of you still here) an update.

Little Angel is doing so good.  The doctors are so happy with her health.  She is growing like crazy.  In the last month or so she is sitting up by herself and is working on using her hands and legs.  She loves to be with her mom and sisters.  They take very good care of her.  In the last month or so, her heart has checked out and shows no ill signs of the hypertension she was born with.  The cardiologist said we would not need to be seen for 6-9 months.  The pulmonologist said that her lungs sound really good as well.

Little Angel will be getting a cranial helmet.  Since she was born, she has favored looking to the right thus causing her head to not form in the correct shape.  We have been trying for a couple of months to make sure she is facing to the left if she has to lay down.  Now that she is sitting, we try to have her sit up as much as possible.  She will have to wear the helmet for 3-4 months.

Unfortunately, our insurance has denied our claim for the helmet, so we will be selling advertising space on her head (helmet) .  Having Alea has opened my eyes to some of the issues of healthcare.  I thought I had a valid opinion before Little Angel was born, but I must admit, I have become a little less opinionated about most things over the last 7 months.  I certainly don’t base my opinions from things I hear on the news regardless how fair and balanced they may or may not be.

The doctor at Primary Children’s said they rank the severity of needing a helmet on a scale from 1 to 10.  1 being least severe, and 10 being the most severe.  Little Angel’s head ranked at a 9.  Research shows that if it is not fixed now, it may need to be fixed through surgery later.  Research also shows that if not treated it could cause hearing and vision issues (If interested in the research let me know I can send the articles to you). 

Our insurance considers it to be a cosmetic treatment just as it considers braces to be a cosmetic treatment.  When I found that out, I was surprised the insurance company didn’t include a copy of Carli Simon’s famous single.  I understand that there are cosmetic advantages that will come from this treatment.  Little Angel is more alike than she is different, her head shape does not need to contribute to her differences no matter how vain the insurance thinks that makes her.

I have had this post in my head for some time, but I have hesitated in sharing it.  I have struggled between sharing too much of our challenge that people may think we are a charity case, or that I am seeking pity. Our family has been very blessed, and Alea will get the treatment she needs.  These helmets are expensive.  We are appealing the insurance’s decision and are hoping they will understand that the helmet is medically necessary.  If not, we will make it work. 

This has caused me to stop and think about the state of healthcare in this day and age.  In no way do I want this blog to be a political blog, but my perspective has been changed.  Regardless of which side of the argument you fall on, there is one point that should be agreed upon by all.  Something needs to be done.  What if there was no way we could make it work?  What if Jodi and I were working two jobs just to make ends meet, and a helmet was not an option.  I am sure there are people in that situation.

I have heard both sides.  The government should step in and help everyone without insurance, while the other side cries that this is socialism taking hold of America.  I find myself somewhere in the middle, understanding that changes need to be made.  In church today we learned about charity. 

While the politicians argue about what is right and wrong about our healthcare, I would encourage you to consider what YOU are doing to help those in need.  Charity doesn’t come from the government, it comes from us.  If you are able and are not doing anything for those who need, I would encourage you to pray and ask Heavenly Father who you can help, and how you can help them.  It may be He answers telling you to send support to earthquake victims in Japan, or He may answer telling you to help the family down the street.  When you receive that answer, do what He asks you to do.

Our family is very lucky.  We have great support from family, friends, and neighbors as we are able to meet our needs.  I am sure that there are those in this world who could use the help, some of them being much closer than Japan.  Our little angel is opening my eyes to this every day.

Mosiah 4:26

“And now, for the sake of these things which I have spoken unto you—that is, for the sake of retaining a remission of your sins from day to day, that ye may walk guiltless before God—I would that ye should impart of your substance to the poor, every man according to that which he hath, such as feeding the hungry, clothing the naked, visiting the sick and administering to their relief, both spiritually and temporally, according to their wants.”

Happy Birthday Melody!! The big 21!

Yesterday was my cousin Melody’s birthday.  She turned 21.  She is a great example to my family and especially my daughters.  I hope you had a special day Melody. 

Here are some  pictures of Melody:

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Here is a write up done by her parents that was printed in the new parents guide that the Treasure Valley Down Syndrome Association publishes.

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Hero Film Friday – Chad Robinson

 

I have known the Robinson family most of my life. You will not find a family with more charity, love, or faith. I have always admired their ability to handle adversity with smiles on their faces.  They are heroes in my mind.

Jed, the oldest son is a partner with me in my video business.

Chad, the youngest son. Here is his story as written by Jed and a video of his artwork.

Chad Robinson was born in a small town in south central Idaho. At the age of two he nearly drowned in an irrigation ditch at his home. Since the accident in 1984, he has been confined to a wheelchair, has limited fine motor skills and does not have the ability to speak.

Despite the ongoing challenges related to his accident, Chad has been able to move forward in regaining lost skills and gaining an education. Although he does not have verbal abilities, he uses other methods to communicate his wishes and opinions.  Chad graduated from high school in 2000 and has taken a couple of classes at the local junior college.

In June 2009, Chad began receiving professional art instruction. He learned about abstract art like that of famed artist Jackson Pollock and others. Since that time he has continued learning new techniques and composition skills. His teacher has developed a system whereby Chad chooses the medium, colors, tool or brush, type of papers or canvas and length of time spent working with a certain color or tool. He is very specific in letting his instructor know when he has completed a painting. Chad has created at least 40 paintings as of April 2010.

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Hero Film Friday - Bill

The world needs more men like this.  A true example for all of us.

Angels Earn Their Wings

A common thing we heard after Alea was born, was about her free pass into Heaven.  I truly believe that kids with intellectual disabilities are guaranteed a spot in Heaven, but that spot is anything but free.

As I have learned more about Down syndrome, I am constantly reminded of my pre-Alea ignorance.  I had no idea what these kids go through.  As I have come to know more about families that have kids that have so many health issues that are due to their extra chromosome, I am in awe of the power of their spirits.  In every case, these kids bring so much joy to their family as they set an unbelievable example of determination, endurance, and will power for the rest of us.

Along this walk I have encountered many little heroes earning their wings.  There is the story of 6 year old Emma, who has diabetes and Celiac disease.  She dances too!  Stop and think about her story for a minute.  Down syndrome, diabetes, or Celiac Disease are all life altering conditions by themselves.  She has all 3!  What bravery Emma shows as she deals with it.  What an example of love her parents and siblings are to all, as they help Emma be her best.  Although it has to be hard, I have never talked to her mother that she has not had a smile on her face.  Emma is earning her wings.

Then there is Vada.  An absolutely adorable baby girl.  Over the last while, she has been experiencing frequent seizures.  As I have followed her story, it is clear how stressful this is to her parents, yet they proceed forward with faith in God.  Each day they face their new challenges head on hoping for the best for Vada as well as her other two siblings.  Recently the seizures have been less frequent.  It does not matter that her family attends a different religious affiliation than I do, their faith in God is undeniable and exemplary to me.  I continue to pray for Vada and her family, and I would ask you to do the same.  Vada is earning her wings.

These are just a two of the many examples of courage and faith that I have come across on this walk with our angel.  As I type this inside of a sleep center, I am very aware that my challenges are minimal.  Alea is currently hooked up to several wires as she tries to sleep so that the doctors can evaluate her O2 levels as she sleeps.  It is not critical, just the doctors trying to make sure she is getting all the O2 she needs.  Having been through a sleep study myself, I know it is not fun.  Alea, however, is resilient and continues to bring a smile to my face as she deals with being poked and prodded with such bravery.  I am glad she is my daughter and that her example is present daily in my life.

Here are some pictures of Alea earning her wings.