Follow by Email

Friday, March 25, 2011

What a couple of weeks..........

The last few weeks have been rough on our family.  Two weeks ago Saturday I came home from work to find Hayden struggling to breath.  He honestly scared me shitless.  I must add that I don't scare easily or hardly ever panic, but this did it.  The poor little guy was breathing 66 times a minute, grunting, retracting, and looked like life was being sucked out of him. I hurried and gave him a breathing treatment, had Brandon pack us a bag and off to the ER we went.  I seriously drove 90 mph down I-69.

We got to the hospital and spent 4 very long hours in the emergency room until Hayden's room was ready in the PICU. Hayden improved quickly with steriods, breathing treatments, and oxygen.  We stayed 3 days in the hospital and then went home on oxygen, breathing treatments, and steriods.  I think I slept a total of three hours the whole time we were there.  I was so proud of Hayden in the hospital.  He was such a good boy and took everthing in stride.

Hayden was doing well and went back to school later that week.  Friday evening I noticed that he was starting to cough and was a little short of breath.  I gave him a breathing treatment and he improved.  We went to bed.  I got up in the morning for work and Hayden woke up coughing and short of breath again.  He improved with his treatment and I left detailed instructions with Daddy and went to work.  When I got home from work that evening Hayden's breathing was a whole lot worse.  I put him on oxygen, gave him several treatments in a row and called and got him more steriods.  He improved and we went to bed.  He slept through the night so I thought that was a good sign.  I checked his breathing and breath sounds before I went to work and he seemed to be doing okay.  I called and checked on Hayden a few times that morning and called our peditrician to see if I could get him seen.  My awesome co-workers sent me home at 10am.

I got home and took Hayden to the ER again. He now has a horrible cough, snoty nose, and is breathing in the 60's again. I suspected that he caught RSV while we were in the hospital and sure enough he tested postive.  We waited 5 hours in the ER this time before our room in peds was ready.

Hayden's nurse had no buisness taking care of sick children.  She didn't think that he was retracting and refused to call the respiratory therapist to give him a treatment when I asked for one.  UGH....imagine my anger towards her!!!  So being the smart Mommy that I am I packed Hayden's breathing medication and gave him a treatment.  I guess she didn't get the memo that when a child has a chronic condition / special needs you listen to the Mom.

Life on peds sucked this time around!!  We couldn't leave the room because we now were in isolation for RSV.  I think 5 milllion people came in our room that night.  When I finally fell asleep at 3am I was woke up at 3:15am by our nurse saying that we were getting a room mate.  What????  I calmly made my point and they agreed to wait until morning to bring in our room mate.

Morning came and I talked to the charge nurse.  I can't believe they were going to bring in another patient that's parents stunk like they just smoked a case of cigarettes.  Let me tell you how great that would be for my autistic, asthmatic child that has RSV.  I talked to the manager of peds and she told me it was okay because the beds are three feet apart and she understands how I feel.  BITE ME!!!  I have not been that angry in a long time, but this lady sure pushed my buttons.  I was prepared to block the door way, becuase those people were not comming anywher near us.  Luckily I was able to talk the dr into discharging us and that whole me blocking the door situation was avoided :)

Home again, home again, back on oxygen, around the clock every three hour breathing treatments, an oximeter, twice a day steriods, and an inhaler twice a day.  That does even cover the 23 vitamins, probiotics, and digestive enzymes that Hayden gets a day and his hyperbaric oxygen therapy.  I feel like all I did was give Hayden meds.  I sure the heck did not sleep.

Hayden's behavior has horrible this week!!!  He peed in my water cup, the dog bowl, the pretend cooking dishes, and in his sisters ride on toy.  He colored all over the walls, table, himself, the dog, and his sister.  He flooded the kitchen and poured a cup of water over his sisters head.  He threw his sisters poop out of the tub and hit me in the head with it....I must say this was the icing on the cake.  He was stimming left and right, poor eye contact, temper tantrums like you would not believe, and was not talking like he had been.

I admit I was scared that autism was pulling him back in.  I can't even describe to you what it is like to watch your child back slide.  All of the hard work we have done in the last year to pull him from the grasps of autism and it was sucking him back in.  I knew that it was only temporary and he would return to his baseline, but man there was some doubt there.

I am happy to report that Hayden is much like himself today :)  I sure hope Daddy can keep up with all his needs this weekend.

Thursday, March 3, 2011

Meeting at Hayden's School

Last year this time I was on a quest to find the best school possible for my son and our family.  On my crazed quest I visited nine different preschools. I spent countless hours searching the Internet, talking to parents, making phone calls to schools, and then visiting nine different preschools.

Out of the nine I visited there was only one that I felt comfortable sending my little Hayden to.  There was one preschool that I left shaking and in tears at the horror that I had just witnessed!!!  Is it ever okay to strap a three year old to a chair because they are not doing what they are told?? I feel sick that people are okay with their autistic children being treated that way.  My heart still races thinking of this.  One of the preschool asked me if I thought of putting Hayden on behavior medication at the tender age of two and a half.  I squealed my tires getting out of that parking lot.  Okay not really, but I wanted to.

I saved the school that I felt was a top contender for my last visit.  That school was Oak Farm Montessori School in Avilla.  I honestly can not put in words what an amazing school it is and what a perfect fit it has been for our family.  Hayden is thriving and I feel as a family we are thriving.  Oak Farm has given my tools and opportunities to better myself not only as a parent, but as a person.  I work closely with his teachers and feel that we are a cohesive team striving to give Hayden the best future possible.

Hayden is doing well at school and continues to make great strides.  The problem is that they are unsure that he will be ready to move up to the next grade level next year and that he needs more than what the level he is in next year.  Which means Hayden's journey at Oak Farm may be coming to an end.  I have full faith that Hayden will be ready come fall.   I look at all that he has over come and I can't help to be completely optimistic that he can and will thrive in the Primary class.

I have monthly meetings at his school to make sure that we are on the same page.  His teachers are so proud of him.  Today I got chills as they were talking of the huge growth Hayden has made in the last several weeks.  They are as excited and proud of Hayden as I am!!!  A teacher that has been working with him even questioned his diagnosis of autism.  I must say that was music to my ears!!!   I know his diagnosis is correct, but also know that Hayden will not be autistic all his life. 

Then came the bad news..................The dean of the school does not approve of Hayden having a private aid in primary.  This is something that has never happened at Oak Farm and at this time they are not ready to implement private aids in the classroom.  I started to tear up.  I am heartbroken.   Deep down to my core I know that Oak Farm is the school for our family.  So what is next???  I am going to write a letter to the dean begging her to allow a private aid for Hayden and schedule a meeting with her.  I need to do some research and find some concrete evidence supporting Hayden having a private aid and it's effect on the whole classroom.  I also have to continue looking at schools in hopes of finding a back up plan.

Brandon, Ruby, and I visited a school in Fort Wayne this week and it was a NO!!  I have another Montessori school in Fort Wayne I need to visit.  I don't know what to think or do!!!  I wish I could just home school him, but know that Hayden needs more than what I can offer.

I can't stand not having control and not having a plan.  I have to put my faith in God and pray that he guides me down the right path.

Tuesday, March 1, 2011

I eat, breath, and sleep autism

Autism is always on my brain!!  I eat, sleep, and breath autism.  There is never a moment in my life that I am not evaluating treatment paths, planning every bite of food that goes in my children's mouths, over analyzing my sons behavior, reading and researching, looking at Ruby for any hint of a "red" flag, or feeling every emotion there is towards autism.

I feel as though in the quest to save my son from the secluded world of autism I have lost my self to it.  It consumes every part of me deep into my core and I feel so broken and lost.  I am no longer Brandi, I am Hayden's Mom healing him from autism.  All the things I use to enjoy have went to the way side.

I need to find balance and I have no clue how.  How do I stop my obsessive compulsive behavior towards autism??  Hayden is doing so well and with out a doubt in my mind is going to live a productive happy life. I feel like I need a twelve step program to detox from being so consumed with Hayden's illness.  Why can't I just let go and relax?

I need to make time and re-connect with myself and my husband.  I have put us on hold and focused every bit of energy I have into my kids.  I feel that I would be a better Mom if I would take time for myself and strengthen my relationship with my husband.  I want my kids to know the "real"me not the crazy lady obsessed with autism.  I want them to know how much I love and value their father and set a positive example of a healthy relationship.