Dani is officially teething.  Depending on the day depends on how many teeth she has.  I was proud, one day she had 5 teeth and the  next day back to her 1 tooth.  She has the normal teething diarrhea.  Fun times!  I am kinda holding my breath because Dani is starting to cough and sneeze.  She was sounding so rough so I had to give her a neb treatment.  This is the first time since June we had to do this.  Dani is starting to have more seizures so we know this is just the start of it.  Hopefully, we can keep her out of the hospital.  She is fighting something because she slept most of the day and was sleeping by 7pm.  

We had a busy weekend.  Grandma Donna came down Friday night.  Suzie, Grace and Abby were over on Saturday.  Tony, Joana and Jasmin came over as well.  Sunday, we went to Tony’s house to celebrate Maria’s birthday.  Happy Birthday Maria. 

The gloves are off…

As I am typing Dani’s entry, I am stumped, puzzled, saddened, amazed and tired.  I look back to when she was first born and how her Arthrogryposis was a huge issue.  But we were working through it, as a family we found a new way of living with Dani’s special needs, therapies, and specialists.  I remember being so instant on knowing “why” and “how can we help Dani” and not having the “fights” we are today.  Everything seemed so calmer 2 years ago.  Today, I feel that I have aged an additional 30 years.  I am wearing down.  I am tired of the “fights” the “struggles” to get anything accomplished for Dani.  I am at a loss to why when she was first born, help was offered from her medical family and we were cautioned it was going to “be a long hard road ahead.”  And yet, when Dani received her brain damage, there was no one to say how hard it was going to be.  No one prepared us for the tough times we were to have in the days to come.  We were told that when Dani was first born, we should go thru mourning because our child wasn’t perfect.  Well, that never happened.  We didn’t see her Arthrogryposis as an issue.  But no one even prepared us after the brain injury.   This journey we are on is a very emotional taxing roller coaster.  We never seem to be at a high long enough before we are knocked back down.  Because of the current struggles we are having, we are pushed to make decisions we never thought we would be making.  Today, we met with Avera to see their take on Dani and our “unconventional” ways.  I am amazed that two doctors can have a different approach to what we are doing.   I am saddened that we more than likely will be switching doctors for Dani.  It is very hard because this doctor we have been going to for almost 8 years.  Sioux Valley or Sanford is all we know.  But in Dani’s best interest we have to go elsewhere.  We are unsure of the type of care Dani will receive if she stays where she is at.  Our wishes will not be respected.  So, we are backing down and moving our journey elsewhere.  I am tired of fighting them, I no longer have the strength to battle.  I will admit they won that battle. 

We had a busy morning.  We went to church.  This is Dani’s first time back in a long time.  She did quite well and stayed awake the whole time.  Then we brought Dan dinner at work.  The girls got see what Dan does at work.  We even snuck in some shopping time at Wal Mart before coming home.  I was impressed that Dani stayed awake the whole time we were out and about.  She usually shuts down and goes to sleep because of the noise levels.  She waited until we got home and she got her feeding and went down for a 1 ½ hour nap.  She is currently doing tummy time and watching a movie with her sisters.  Other than that, we had a pretty quiet and uneventful weekend.  Kinda nice to have those every now and again…

I finally updated her website, if you want to see some information on what is causing all the turmoil with her medical family, view “Dani’s New Program”

Positive steps for Dani

Dani continues to do well on her “unconventional” program.  We are starting to see Dani with bright big eyes at times.  It is good to see her be able to do this again.  Hopefully, we can build her up to be awake and bright eyed for longer periods of time.  We are actually working on weaning her off the Depakote and she is doing awesome at this.  She is controlling her seizures very well.  It is awesome for her to go from having seizures 5-6 times an hour to at most 3 a day.  I can’t wait for Dani to get off more of her medication to be an “active” part of our family.  One day, we will be able to meet Dani again, not this drug induced zombie we currently have. 

Yippeeeee…

I finally checked up on what the insurance decided about covering the Philadelphia doctors.  They APPROVED our request!  Instead of paying over $4000, we only have to pay a $30 copay!   Finally, it looks things are finally going in the right direction.  Also, with a state program that Dani is on, they will reimburse us Dani’s and my airline ticket, hotel, car rental, gas and meals.  So, we only will have to come up with money for Dan’s ticket.  We can handle that!  We will be bringing Grandma Donna with us in March because Dan and I will have to attend some lectures.  She will get to baby sit Dani.  Grandpa Durand will stay with the Kaylee and Brianna so they don’t have to miss any school.

Also, for the first time since January 23^rd, 2006, we are finally making “future” plans for Dani.  We never were able to do this for her before.  I approached Tea Sprouts Preschool about seeing if they would take Dani on next year.  I honestly did not think it would go anywhere because of her complexities.  Dan and I want to send her somewhere where she will not be taken advantage of because of her being nonverbal and we know and trust the teacher for Tea Sprouts.  I got a call this week that the board voted UNIANIOUMSLY to accept Dani into their program.  I am touched and speechless that Dani got accepted without hesitation to be a part of their group.  I guess I was looking for a fight or a flat out NO because that seems to be the norm for Dani.  I think we are finally moving in the right directions for Dani and I anticipate each new day to see what changes Dani is accomplishing.  

I posted some pictures of the Truck Convoy in the photo gallery. 

Dani continues to do well with her Institutes program.  Dan was impressed when he was touching her arm with an ice cube, she pulled her arm away from him.  It caught him off guard because she pulled her arm towards her and out of his hands.  Seems that our “unconventional” ways are helping Dani.   

We are still working on reorganizing Dani’s medical family.  One big step was her neurologist.  Dani will no longer be traveling to St Paul for her neurology needs.  Since Dr Bernard left, we decided to utilize Dr David again at Avera.  We will, however, still go to St Paul for her neurosurgery needs.  When we starting reorganizing her medical family, there were certain doctors that I thought we were never going to have to change.  But now we are not too sure.  We are currently tackling that issue and it may be that we might have to go as far as switching which hospital we are affiliated with.  Luckily, the insurance covers either one in Sioux Falls, so that it not the issue.  These are not easy decisions for us, considering we have been going to Sioux Valley for the past 8 years!  By next week, we should know what course we are taking for Dani. 

A Girls Weekend…well, plus Grandpa!

Dani was invited to attend the World’s Largest Truck Convoy in Fargo ND on Saturday.  So, I packed up the gals and picked up Suzie, Gracie and Abby and we headed to Fargo.  We looked like the Clampetts because with all the extra stuff we have to bring for Dani, there was no room for her kid kart.  The kid kart was bungee tied to the top of the Heier Van.  Abby thought it was awesome to sit next to Dani.  Dani amazed us, she normally does not like to get out of her routine, but did very well.  She did well with the extra noise and different environments.  We stopped at Grandma Donna’s Friday night to feed Dani before going onto Fargo.  We spent Friday and Saturday night at a hotel.  For some reason, Grandpa thought it would be better to sleep in his truck rather than a suite with 5 little girlies!  I am not sure why he would want to miss out on all the fun!!!

Here is some background information on the World’s Largest Truck Convoy.  The World’s Largest Truck Convoy is a one-day celebration that helps raise money for Special Olympics.  The 2006 World’s Largest Truck Convoy was a huge success. More than 1,800 trucks participated, raising more than US$544,000 for Special Olympics Programs. That represents an increase of more than 25 percent over 2005’s fundraising total.  More information is at http://www.sonc.org/regions/region_cv_truckconvoy.html

An Unexpected Alliance…meeting #2 & #3

Today we had two meetings with Dani’s medical family.  The first one went good.  No real opposition for what we are doing with Dani.  Dani is very loose, not tight, so that is good, since dropping all the therapies Dani hasn’t regressed.  It was a step in the right direction.  But it was the second appointment that blew Dan and me away.  I thought it was weird that the nurse took time to ask about the positive changes we seen in Dani.  I of course, love to talk about that.  It was bizarre to actually have someone in the medical field actually ask and even listen to us without their minds already made up.  Then the doctor came in and offered SUPPORT to us.  I nearly fell over, support, open minded, willing to learn.  WOW.  I was numb to have someone else agree with us.  It was even said that what do we have to lose because we have tried everything already, Dani has been to many doctors and no results.  He was impressed with her positive changes and is on board with going with a natural approach for caring for Dani.  Honestly, you don’t know how it feels that this happened.  Her medical family was really getting us down with their negativity, even though in my heart I know we are doing the right thing for Dani.  He can’t wait to hear about what change Dani will do next.  I am confident that Dani is here to teach us and it is up to each of us if we want to learn from her. Just because it may defy “scientific logic” doesn’t mean it actually can’t be achieved!

Meeting #1

I didn’t get a chance to post last night.  We got out of our meeting at 6:30 PM.  This is Meeting #1 with Dani’s medical family regarding our “unconventional” ways for Dani.  We have 2 similar meetings with different doctors this week.  Dani was pulled up in her kid kart around the table for the meeting.  When it came to the part that there isn’t enough scientific evidence (medical journals) to support the Institutes they are bound to recommend to us not use their program.  I asked her to look at Dani and if it is “ok” for her to be so drug induced.  That isn’t the only time I referred to Dani.  When I asked, “Ok, you don’t agree with the Institutes, what else is there for Dani?”  The response was we were already doing that for her.  I again said “look at Dani, when do you say as a doctor, enough overloading her on medication, she is on way too much, when does that come to play?”  We are not ok with this zombie her medical family has created, we want more for Dani and hearing them say “this is it” is not ok with us.  I brought up the fact that Dani’s medical family is quick to pass judgment on the Institutes, but has one yet asked “what changes have you seen in Dani?” No one has looked at the positive because since the “scientific research” isn’t out there it possibly can’t help and that Dani can’t possibly get better.

The meeting was not only about the program, but using the ER as well.  See, hmmm, the ER isn’t our best place to go for Dani.

1. This is where Dani got her injuries

2. They sent us HOME when Dani was having problems with her seizures.

3.  They don’t LISTEN when it comes to Dani

4.  They won’t CALL her neurologist, only the peds doctor on call

 So we avoid the ER at all costs and they know this.  They wanted to know what we will do with Dani if she gets sick.  Well, we will take care of her at HOME as much as possible.  Her bedroom is really a mini hospital room and other than having a doctor, we have everything possible for her.  Then it came up if she had a seizure we could not stop, what would we do.  Good grief, we aren’t going to deny Dani medical care, if it got out our “expertise”.  They only have to realize our “expertise” and comfort level on taking care of Dani when she is sick is quite high and for something they would recommend bringing Dani in to the ER, we would do better at home.   

A letter to Dani

Dear Dani,      

      I want to tell you that, “I’m sorry.”  I am sorry for letting your medical family get me down that I lose my focus.  You are my strength and my inspiration.  As they back us further against a wall, you show us the way.             

      You no longer struggle at every breath, in fact, the last time we used oxygen to help you was back in June.  You no longer have a weak cough.  We are impressed how strong your cough is getting.  When we are snuggling you and you cough, we can now feel your breathe on our face.  You have made enormous gains with your salvia.  We no longer have to worry about you choking.  You no longer have your aspiration episodes.  You would scare us with these.  But since we switched you to real food instead of formula based milk, this has helped you so much.  It pains me that your medical family does not agree with this.  When we first started putting you on your tummy, we would have to switch out your burp rag 3 or more times a day because of your drooling.  Now, I can say, it only needs to be switched out weekly for washings.  No more puddles of drooling!        

        You have gained weight!  After 8 months of constant weight loss, you gained 2 pounds!  Again, criticism from your medical family was voiced.  You also grew ½ inch.  At this rate, you will be our tallest child.  Kaylee and Brianna were always in the 30-50 percentile for their height.  Yet, you hold strong in the 70 – 75^th percentile!  We know this new diet is already doing wonders for you and we will continue to fight them on this.           

       It seems that you have stumped your medical family with your wonders.  Instead of taking you on as a challenge, they seem to find you inferior to their intelligence.  They offer their “institutions” for you, but you are a part of our family and that is where you are going to stay.  The offer their Hospice program, because by their account you should be dead.  But you are still ALIVE and THRIVING.  Sometimes, it feels like they want you to die that way you can stop insulting their intelligence and defying their logic.           

        From the second you were born, you have always done everything on “Dani Time”.  It seems that you skipped the book about “conventional” ways to take care of a special needs child.  Instead, you have written your own book.  It would have been nice to get a user manual for you, but we have done the best that we can.   You have proven time and time again, that you are unique and challenging.  I cannot understand why the conventional ways were always forced on you when clearly they were not working.  Now, don’t get me wrong we have met some pretty special people that tried their best to help you.  You insist on being the teacher at your young age instead of the pupil.  I think your medical family has a lot to learn from you if only they could open their minds to it.             

       Dani, you helped me become a better person.  We take so much for granted in life. You have shown us to slow down life and appreciate the small stuff.   We treasure your smiles, your giggles and your triumphs because we don’t see them as often as we want to.  Every so often, we get a 30 second glimpse of the “old you” and that breaks my heart.  Not because you do it, but because you medical family is so willing to give up on you when clearly you are still in there.  We are trying little one, we are trying to get you out of you prison called your body.            

      We have many more changes coming for you in the months to come.  You are the hardest worker; because you take everything on that we throw at you without complaint.  Your endurance is amazing.  I vow that we will do everything we can to get you off those seizure medications that are holding you back.  Your medical family is hell bent on tackling your vitamins, but NOT ONE has said you are overdosing on your 6 seizure medications.  NOT ONE.  A few of your seizure medications are NOT recommended for children under two and yet you have been on them for quite some time.  But it is bad that we want to give you something all natural.  I probably can predict that one day we will have Social Services knocking on our door for neglect because we want more for you.  We have never been at ease with the drug induced zombie you have become.  But what do we know, we are only parents, we are supposed to do what your medical family says regardless of the consequences.   I say, “Bring it on” because will we continue to fight for your rights.  You should not have to be overdosed on seizure medications just to please your medical family.  They do not see you 24 hours a day, they do not see what they are doing to you, and they do not see that they are holding you back.           

     Continue to fight girly, continue to thrive, and continue to defy your medical family’s logic.  We love you!