SSI Update

I gave "Chris" my regular weekly call today in regards to an update for the SSI coverage.  This is insurance that is not income based for persons with special services.  Chris had informed me that Eva was denied coverage.  I can't even express how disappointed and heartbroken I am about their decision.  The process had started back at the end of December.  I filled out multiple amounts of paperwork, including doctors statements.  I hd made copies, used neighbors fax machines, mailed in more paperwork and talked to more "Chrises".  After Chris told me the news I had asked her the million dollar question - "Why?".  She then transfered me to one of the nurses on the review board.  The review board was the third step in this process (first being all the paperwork, second being denied by HHW which is income based).  The nurse stated that she was denied because the illnesses that she has had so far does not consistute her being "special".  I then explained that her diagnosis has many potential problems and has caused all of these medical issues.  She said 'sorry' but the decision had been made.  She did recommend me to get further research and documentation from doctors giving more information about C17 so I could appeal their decision and they could review it again. 

So now I have a new project, besdies my many daily duties.  I know and will give my most profound promise that Eva will get SSI somehow.  I will never give up until she recieves coverage.  I know that C17 is not common knowledge but will be more common after I complete my goal.   I know that technical advances will be in my favor.  And again, I KNOW she will get coverage!  My long journey just took detour but it will eventually get me back on the right road. 

Another word - full usage

"Hi"!  Yes, she has a thing for the hhh hhh sound.  She can say "hi" to just about anyone and everyone (especially blondes!)  A few other happy tidbits about Eva now -
her cold is now going on day ten, runny nose and a slight cough.  She has broken free a nub tooth, now her third on the bottom, just left of center.  She is continuely side-stepping and we are trying to teach her how to walk in a forward motion.  I still predict her walking by mid June.  And the last tidbit - her shoe lift was fixed Thursday.  It was a little higher than it should have been.  Someone asked me if that was a custom made shoe - I replied - "no, just a regular Nike with a really large lift". 
On a totally different note - I am really impressed with the amount of family, friends, and others that are following our adventures!  We are approaching the 4000 'views' from over twenty different countries.  Just last week the most views came from US, Russia, and Germany.  By saying this, if you or any acquaintances know any families that know anyone with C17, please feel free to leave a comment or contact me through email. 
Thanks for reading!

Eva's "brim" Moment!

The "Hat"

Today after I got Eva up from her nap to get ready for PT, we were sitting on the floor in front of the couch.  I had just got the yard cut and cleaned up so I was of course wearing a hat.  Eva was sitting next to me babbling something and "reading" a book.  She then grabbed a hold of my shoulder and hoisted herself to the standing position. She reached for the brim of my hat and said "hat".  I look at her with the ear-to-ear smile and motioned the sign hat (patting my head) at the same time repeating her  "hat".  She took it off of my head and placed it on hers and said "hat" again.  I was so excited!  I think that officially this is her first word.  Ahhh - a joyous moment.  Hat. I now know this it will only continue to get better.  I love seeing such moments like these when children or babies learn something and makes them feel so proud that their lightbulb has finally turned on.  Hat.  I wonder what will be next.  Hat, hat, HAT!

We have made it through the weekend seizure free.  Eva did not have a fever but we continued with the breathing treatments every four hours.  We even had one of those bonding moments when I quietly went into her room at eleven while she was sleeping.  I knew I had to give her some relief by another treatment but was hesitant to wake her.  I remembered back to January when one of our many respiratory therapists would enter the room every three hours and do it while she was sleeping.  She never woke.  They made it seem simple.  So I decided to give her one hoping that it would relieve her of coughing throughout the night.  When I turned it on, thinking that if was under her bed it would not be so noisy, it scared the crap out of her.  I felt horrible but the process must continue.  I leaned over her crib (killing my back in the process) and she continued to sleep.  After ten minutes of shifting my weight from side to side, we were finished.  She seemed better and I drifted my way to bed.  This morning her cough was better and her nose was not as prominent as yesterday.  It think that we are starting to learn how to control these reacurring colds.

Hearing Reslts - Again

Today we took a visit to the Indiana School for the Deaf.  Their campus has beautiful all stonework buildings and the greenest grass for acres.  The school was founded by Elizabeth Willard in 1849 which happened to be where our assessment was taken place - at the Eliza Willard Building.  When we arrived we entered the building and the art on the walls was in such detail.  For example, next to each doorway going into an office, hallway, or other form of passage, there were clay painted hand figures in vivid colors mounted on 9*9" etched wood.  Each of them was a letter or number for a certain sign in sign language.  It was like eye candy for the observant ones.  So anyway, we started testing at one.  I was told to keep her awake so that she would take a long nap there.  The theory was to keep her sleep deprived so that they could attached four sticker probes to her head and behind the ears and proceed to stimulate sound while she was sleeping.  It sounded like a fool-proof test to me.  First, we went into the sound proof booth and they gave her the same light-up boxes with stuffed animals int he corners - same rodeo as the others.  After five or so minutes of this, they realized that she was not interested and that we should just put her down for her nap.  I then went into another room where there was a small crib, a comfortable blue chair, the computer desk and other equipment.  I changed her diaper, gave her milk, tuned off the light and then closed the door.  Needless to say, she fell asleep after about three minutes.  To took myself to the table in the waiting room by the couches.  I went back about ten minutes later and opened the door.  I let the two interns know that she was sleeping as well as the audiologist.  I suggested that they wait about five minutes before completing their testing. 

About ten minutes later, the audiologist stated that she was a light sleeper.  She had woken up and I could clearly hear her crying.  I the stated that maybe if we give her drink back and try to close the door again that she ma go back to sleep.  So, they did just that.  About five minutes later, we all heard a sound that was similar like something falling to the floor.  One of the interns jumped to see what had happened and came back with a smile so I knew it was not Eva that made the thump.  She said that Eva was standing in the crib trying to remove all of the audio equipment attached to the crib and managed to get half of it off.  So obviously the nap test would not be completed today.  The took her back into the sound proof room and continued with the hearing screening test.  This test is measured in decibels (Db).  For a "normal" child, the range for her age is between 15-20 Db.  The smaller the number the quieter the sound.  She was in the 15 Db range on both sides.  This Has been the first positive reading from any of the hearing screening test so far!  Out of the five total hearing tests that we have had, this was by far the most professional and parent assuring experience (not to mention the staff was extremely kind and sought out her needs).  We did however schedule another appointment in May for a follow-up and confirmation of her scores. 

Second time in sound booth - obviously I am not a distraction :)

Survived the Weekend

We have made it through the weekend seizure free.  Eva did not have a fever but we continued with the breathing treatments every four hours.  We even had one of those bonding moments when I quietly went into her room at eleven while she was sleeping.  I knew I had to give her some relief by another treatment but was hesitant to wake her.  I remembered back to January when one of our many respiratory therapists would enter the room every three hours and do it while she was sleeping.  She never woke.  They made it seem simple.  So I decided to give her one hoping that it would relieve her of coughing throughout the night.  When I turned it on, thinking that if was under her bed it would not be so noisy, it scared the crap out of her.  I felt horrible but the process must continue.  I leaned over her crib (killing my back in the process) and she continued to sleep.  After ten minutes of shifting my weight from side to side, we were finished.  She seemed better and I drifted my way to bed.  This morning her cough was better and her nose was not as prominent as yesterday.  I think that we are starting to learn how to control these reoccurring colds.

Back to the Doctors

Wednesday night, Eva starting getting a runny nose.  I can only assume that it was from exposure at the Y because nobody around us or where we had been was sick.  On Thursday morning it was becoming more prominent that she definitely had a sap tree attached to her.  That afternoon after her nap, we started giving her Tylenol then switching to ibuprofen.  I checked her temperature that evening and it was only reading 99.  On Friday morning I called the doctors office to hoping to get a non viral reading.  We went at eleven and despite her symptoms of nasal congestion and a light dry cough, we got a prescription for Amoxicillian.  Friday night I placed her into bed and the monitor was not working.  ARGH.  So I set up the back-up sound only monitor.  SHe seemed ok.  When I ventured off to bed it was hard to not listen to her coughing every five to ten minutes.  She sounded horrible.  Now it is Saturday and the older two had a soccer game.  Scott stayed at home with the younger two while I watched my winning girls play hard.  When I got back, Eva looked worse.  Her eyes are puffy, her face seems a bit bigger or even swollen.  Her nose is red under the nostrils and at the tip.  Her cough is still dry but is continuous about every two to five minutes.  Her nose is still running like crazy.  The good news is is that her spirit is pleasant and her energy level is good.  I can only assume that her stomach muscle are going to hurt soon.   I can almost sense what will happen next.

Spring Break Week

This week has been a whirl-wind!  The older two were home from spring break and we have been busy bees!  On Tuesday, two very good things happened.  First, we went to the orthotic doctor and picked up the orthotics.  Now that we have been using them for almost a week, she seems to want them on more and more.  Also Shelly, our speech therapist, came over for a session.  She had brought over a new bat toy to help simulate the muscles in her mouth.  This toy (when working) has a vibration.  She really likes chewing on it - when it is working :)  Thant night, I took the girls to a McD's Playland for a quick and easy dinner.  After they finished eating, I let Eva venture around the padded floors.  She was cautiously watching this very well mannered four-year-old boy.  He was going up the steps and back down, saying excuse me every time passing by her.  She made her way up the two steps and into the first tunnel.  It had surrounding windows and a thruway that lead to the rest of the tunnels.  Once she got into that area there was no getting her back out.  She was crawling to the end, playing patty-cake with the windows, sitting, standing with help of the walls, crawling some more, then crawling away from me faster when I got within 3 feet of her. 

I was finally forced to climb into the tunnel after her to e able to leave.  It was great.  I loved her being able to explore this new habitat.  We will definitely be back for the fun.  

On Thursday we had another trip with friends to the zoo.  It was a little colder than Monday but we survived.  After we returned home, there was some demanding sister fun time and I just get lucky with this shot! ---->

Friday we celebrated Passover with my family.  It was a bit long for the kids but we had a very nice time and I know the girls received a much needed educational lesson.  They all looked beautiful but I don't think that anyone thought of taking a picture.  So now today is Easter Sunday.  e have made it through the week.  The older girls go back to school tomorrow and m routine gets back to normalcy :).  As it being Easter, the girls are again beautifully dressed up and were as happy as a butterfly when they woke up with surprises in their baskets. 

New Shoes - Sorta

Today we went to get the orthotics and a shoe lift.  Eva was as happy as can be playing with the "new toys" in the room.  She was fitted with her custom orthotics.  They are white in color.  They are hard plastic.  They cover the arc of her foot, top and bottom, her heel is placed into it and it goes over her ankles.  They are tightened by two velcro straps.   After they were placed on both feet, we then put her shoes on.  Her feet are much wider with the orthotics but the shoes she has are very flexible and can expand also by a velcro strap.  They are to be cleaned by damp washcloth with bleach as needed. They fit nice.  He said we were set to go but I reminded him of the shoe lift.  He took the shoe and stated that he was going to see how high it was going to be.  When he returned about fifteen minutes later, the left shoe is now a platform with an additional one inch foam sole.