Since it is the end of the month, it was time to call the Insurance for their answer on if they were going to cover the medical costs in Philadelphia.  Well, after the long pause from the customer service rep, I knew something was up.  She proceeded to tell me that on Aug 10^th, the request was closed but no answer was made.  Ok, how do you close a request without making a decision?  Luckily, I actually got a rep that was willing to find out the answer as well.  After long holds, she then proceeded to tell me that Aug 8^th a letter was sent to the Institutes requesting more information on Dani and since they didn’t hear anything back, her case was closed on Aug 10^th!  TWO DAYS they gave the Institutes to get information.  I am not even sure if that was enough time to mail the letter.  So, I call up the Institutes and they said they never got a letter/request from the Insurance.  Here we go again, the run around to get something completed for Dani.  The rep from the Insurance Company also said if a request like this is made BEFORE Dani is seen by the physicians, the request is automatically denied.  Hmm, when I talked with the insurance in June, July and the beginning of August, no one ever said this.   So, now I have to work on getting the information they are requesting from the Institutes to make sure we can re open her case…

Dani’s pediatrician and I had a long talk tonight.  It was a chance to get things said that haven’t been said.  It was heartfelt and civil, but at the same time frustrating.  We all know how Dani’s brain damage was caused, the mistakes that we made to her, but instead of helping us help Dani, the hospital has seem to always take a different approach.  Like a cover-up.  We didn’t find out until two days later that Dani’s heart stopped for the 8 minutes that scary day, the key paperwork documenting her case is “missing” and virtually no help was given for Dani.  To this day, the same holds true, every time we bring Dani to a different facility, it is always cautioned to do so.  Now, don’t get me wrong, Dani’s pediatrician has always been supportive on our decisions for Dani.  It isn’t her fault she gets pushed in a corner.  I do have one dream for Dani.  I dream that she can go into each of her 12 doctors and show them they were wrong.  They gave up when she still had a will to fight.  She will prove them wrong one day, I am sure of it.  My fear is that they will not learn from Dani. 

We are fighting for Dani. We are her voice, since hers was taken away from her.   She is our strength, our inspiration, and our hero.  You don’t know how hard it is sometimes.  You can’t think about the past because it is so painful to see what she has lost.  You can’t think about the future because the outlook is so depressing.  You can only live in the present.  One day at a time, your life is on hold, there is no time for planning.  And when you are constantly given the “wait and see” approach, you see your life getting more and more bleak.  The hope starts draining from your body and you start losing the will to fight.  Then the next instant you feel guilty because you see Dani still fighting for her simple life that doctors wrote her off months ago.  She hasn’t stopped fighting, so why are you?  Every day is a never ending roller coaster ride of emotions.

I need to vent…

Ok, not sure where to start but here goes… I finally got a chance to let Gillette Children’s Hospital know what we are doing with Dani, specifically her diet change.  I am searching for the right words and trying to see if from their prospective, but I think my anger is blurring it just a tad.  I explained how Dani is gradually working up to an all natural, organic diet.  The response from them really proves that Dani’s medical family thinks we are sending her to a bunch of quacks that do not know what they are doing.  I was told, “I would encourage you to take nutrition advice from a registered dietitian, hopefully they have a credentialed one on staff. “  Isn’t that a slap in the face?  If that wasn’t bad, I missed a call from one of Dani’s doctors today.   Luckily, I had voicemail to listen to so I can work out the right words.  Because referring to Dani’s new program as “unconventional” touches a nerve.  They do not see the changes we are seeing in Dani.

ü  Dani is starting to hum and growl again, she even has her overdramatic yawns and sighs back

ü  Her scoliosis is barely noticeable.  When she is on her tummy you can actually see the spine going in the right direction

ü  Dani’s eyes don’t get away from her as much, she has much better eye control

ü  Her salvia isn’t as thick  and she is able to control it for the first time since January 23, 2006

ü  Dani’s COUGH is getting stronger.  This is vital for Dani.

ü  Despite all of her medications, Dani is more alert and aware.

ü  She is more reactive to unpleasant situations and she is starting to let us know “that hurt”

Why wouldn’t you NOT promote anything that is bringing about these changes that we are seeing in Dani?  I know her medical family feels that their license can be in jeopardy if they agree to our “unconventional ways”, but if you ask me the only one that should worry about her license is the doctor that CAUSED Dani’s brain damage.  Why would we subject Dani to therapies 5 times a week that were not producing any results?  Oh, that’s right, we were getting no results because of “all of Dani’s medications”.  I am tired of the finger pointing on whose to blame and who is right.  We know and feel that what we are doing for Dani is right and we are tired of fighting those of you that don’t.   Either you believe in Dani or you don’t…there is no gray area here…

Dani’s Journal is back…

I have awesome news….Dani’s Journal was restored!!!  I was pretty bummed that I lost her journal during the latest updates I did.  I put a link on the right side and named it “Dani’s Old Journal.”  Whew! That was a ton of information regarding Dani’s last year that I thought was gone but it is now restored!!!  I was afraid it was gone for good.

Dan and I have noticed a change in Dani.  Dani’s cough is getting stronger!  We have been masking her (a form of breathing treatment) for a week now and already see results.  Dan said Dani coughed on him and he could actually feel her breath on his face.  Baby steps to getting Dani better…

All is well…

Sorry, for not updating this week, not sure where it went.  Dani is fine, I just got behind on her journal being out of town for work.  It was nice to finally get home and sleep in my own bed!  The girls had a good first week of school.  Kaylee is a fourth grader and Brianna is a second grader!  Wow, time flies.

Dani had a chiropractor appointment this week but other than that she had a quiet week for appointments.  We have taken Dani off the ketogenic diet.  We are slowly introducing a nutritional program for her.  We replaced one of her keto meals and tomorrow we will replace two meals with the new diet.  So far, she seems to be handling it quite well.  We have also introduced new vitamins for Dani as well.  We are working on “masking” Dani.  This is a technique to help build up her respitory system.  I will post more on all this later, I am trying to get caught up for being gone the last two weeks.

The girls had their first day back to school today.   From the sounds of it, everything went well.   At least I was able to drop them off at school before I had to go back out of town.   Of course it was down pouring and they had to go to the gym.   Kaylee wasn’t too sure about having to find her room on her own, but she survived.   Kaylee is at a new school, so it is an adjustment for her.   Beans said she had a good day.   She didn’t care that Kaylee wasn’t at her school anymore.  Dani had a good day as well, maybe it was the nice and quiet house?

Home at last…

We made it back home safe and sound.  Dani did awesome again on the flight back.  Once again thank you Grandma Donna and Grandpa Durand for taking care of Kaylee and Brianna while we were gone.  Also, thank you Tony & Joana for checking up on Coco and getting the mail.  We go back to Philadelphia March 17th – 21st.  I figured it out that if the insurance doesn’t pay for anything (it is currently under review) it will cost us $14,000 a year to bring Dani to the Institutes.  This includes airfare, car rental, hotel, and the Institutes costs.  But the price is worth it if it helps Dani.

A plan is made…

Dani had a busy day.  We learned a lot how to help Dani at the Institutes yesterday and today.  A little overwhelming to the amount of information we were introduced to.  But once we get home we can digest everything and get organized and start helping Dani!  But for now, we have to pack to start making our way back to South Dakota.

Dani survived her first day at the Institutes.

Dani got evaluated many times, measured, and went over her extensive history.  In Dani’s short 2 years, she has accumulated a massive medical file.  They were impressed by Dani and how she is able to defy odds and survive.  Dani is a profoundly, diffuse, bilaterally brain injured in the Cortex, Midbrain, and Pons areas of her brain.  By knowing this they are able to tailor fit a program to help Dani become more “functional.”   Dani’s neurological age is 1.29 months and her chronological age is 25.4 months.  When we attended the lecture series last June, we learned kids with the wider gap between neurological and chronological age tend to improve more than kids without.  (For you skeptics out there, we KNOW that there is no guarantee that Dani will get better.)   The next step is for the staff at the Institutes to sit down and discuss what path would be best for Dani and design a program for her.  They will be tackling her nutrition and we can’t wait to see what they will suggest.   We were told before we can detoxify Dani she needs a good nutritional program first.  Also, they said the masking program will help Dani breathe better than taking her short, shallow breaths she is so fond of doing now.  Dani gets a day off tomorrow, so if she allows, we plan to take her sight seeing.  We just have to attend a lecture in the evening. 

Dani and Dan are currently relaxing in bed watching TV.  Dani has earned the privilege of sleeping on the couch tonight!  We have a king size bed and Little Missy took up ½ of the bed and kept us awake with all her snorting and snoring.  Hopefully, she will have a better night. 

Every day Dani amazes us with her strength and will to survive, I can’t wait to see what The Institutes can do for her.  You can not believe how we feel that we are FINALLY at the right medical facility for Dani…