7 Things I learned when I came out of the "hospital fog"

What I learned coming out of the fog and how it has made me a better advocate for my son!

So.  You're sitting in the hospital.  Whether it is the waiting room, ER, or any other wing.  Your child is either next to you or in your arms and you are thinking to yourself  "how did this happen?"  Maybe your mind is blank.  Maybe you are sorting through the horrors of the "what ifs" and the "what nows?"  You are lost.
As you come out of the fog there will be many things that you will look back on and wonder how did you miss that?  You will wonder why you let this person do that or that doctor do this.  You will beat yourself up for not looking up certain methods or researching on medications.
I would like to share the things that I have learned since coming out of the hospital fog.  There are MANY things that new parent's of sick kids miss and it is not your fault.  Whether your kid has the flu or has a catastrophic seizure disorder there is no pamphlet.  Here's what I have learned:

1. You are ALWAYS right
I don't care what degree that doctor has.  If you as a parent feels like something is wrong make them listen.  If they don't listen then you find someone else.  A parent's intuition is NEVER wrong.  You know more about your child then they do.  You see your child everyday.  YOU know when something is wrong.  Do NOT let a doctor belittle your intuition.  Especially if you are a mother.  We know things about our kids that doctors would not even suspect.  This may cause you to come across as one of "those" parents.  Who cares?  You are child's advocate, live up to that. 

2. Doctors do NOT know everything
Let me start by saying there are good doctors in this world.  Unfortunately there are also some not great ones.  It amazes me how even some of the best doctors I've met are unwilling to look into parents' concerns.  It is amazing how often they blow off parents' concerns.  They may have all the answers but that does not mean that they are always right.  As an example often times Infantile Spasms is blown off as constipation despite parents insisting it is something else.  It can take up to several months before parents are finally believed.  Sometimes it takes awhile to find that doctor who will listen to you and be a team player.  It is so worth it when you find that doctor.       

3. Not all bad things that happen are BAD
In my experience it seemed like in the beginning nothing but bad things happened.  Regression, worse prognosis, more seizures, more medications, over dosage, bad doctors, subdural-hematoma, being put under hospital arrest.  When I look back now I can see that every bad seemed to contribute to the overall good in the end.  If the first doctor hadn't of put Bridger on phenobarbital then we never would have recognized his body's need for it.  Despite the doctor's blunders of over dosage this was one good thing that I believe saved Bridger's life.

4.  Learn about your child's illness
So often I have parent's come to me asking for advice.  One of the first things I ask them is if they have done their research.  It surprises me how often the answer is no.

The more you educate yourself the more you can help your child.  This enables you to be a more affective advocate for your child.  You will begin to understand what is happening to your child.  You will understand what so often doctors try to say above your head.  You will notice things that perhaps you never would have noticed before.  You will be what your child needs.  

5.  You will become the EXPERT
You will reach a point where you know more about your child's illness then even the greatest of doctors.  Each child's illness is unique.  No one's illness is the same.  You will become the expert of your child.  You will know what is happening.  You will notice even the smallest of things that many doctors would miss.  This bothers most doctors.  They have the degree so they get the final say.  There are good doctors out there that will let you lead.  Find them.

6.  There are support groups EVERYWHERE
All it takes is a Google search.  If your child has a rare disease I guarantee there is a support group online especially on Facebook.  Some of the best help and advice that I have received is from the online support groups.  I love them.  Sometimes they make me sad seeing how hard other parent's struggle.  Other times it gives me much hope.  The most important thing it does is it helps you realize that you are not alone.  Remember when you were sitting in the hospital?  Feeling so lost?  Feeling completely and utterly alone?  You are not alone.

7.  There are resources EVERYWHERE
Back to feeling completely alone.  Say your child is lagging behind developmentally.  You don't know where to turn or who to go to.  Perhaps other hospitals are different but in our case our first neurologist only happened to mention Early Interventions to us as kind of a side comment.  I had never even heard of it.  You will become an expert of finding the resources available to your child.  What is important is that they ARE available.  Don't be afraid to look.  Your child deserves it.

I hope this gives you...well hope.  There is a light at the end of all that hospital fog.  There is lots of bad but you'll be one hell of a parent by the end of it all.

What have you learned since coming out of the hospital fog?



                    

How I am teaching my baby to ASK

Recently Bridger was re-evaluated again to see where he landed developmentally.  It was one of those "yay" and "awe" moments.  He is right where he needs to be with his gross motor skills, ask me how I know this.

Playing at the park

He is all over the place so this is nothing new to me.  It is a slow decent from there.  He is at a 10 month level with fine motor.  This is mostly due to his inability (or lack of interest) to pick things up with his fingers.   He is cognitively at an 8 month level.  Thinking back this makes sense.  No wonder he is confused and anxious all the time.  It's like putting a 6 year old into a 25 year old's body (is that too drastic?).  His speech was the lowest being at 6 month level.  The speech and cognitive were discouraging to hear.  I knew he was behind but it's hard to hear your child is almost a YEAR behind.
I wanted more than anything to pout and be upset about it.  That always seems to be the easiest solution right?  Maybe I did pout, for a minute.  Then I started doing my research.  I can never say this enough but:

Knowledge is power

I got this awesome copy of a book called Sign about Meal Time.  I have been incorporating it a lot into our meal time lately.  Especially with the things that he likes the most like:

Sign About Meal Time

I think it will make a difference.  It's frustrating right now because there are no instant results but I think slowly they are starting to stick with him.  I help him make the signs whenever I can.  I would highly recommend this book to anyone.
Speaking of instant results I was getting frustrated.  I happened to come across the idea from my aunt and a few mom's with disabled kids.  They talked about making their kids ASK for what they wanted.  This intrigued me.  They could ask however they wanted but not with crying and whining.  They could ask with words, sign, or just pointing they just HAVE to ask.  I decided that I would try this with Bridger.  I put Bridger in his chair and explained to him that he needed to ask and pointed his hand to each meal item.  This is the results I got:

He screamed, did his fake cry, and simply ignored me but I stuck with it.  I worried that he wouldn't do it when he finally placed his hand next to the water.  I gave him a big drink of water!  We clapped and cheered, I told him thank you in sign, and asked him "more?"  He fought it the whole way but he put his hand to each thing that he wanted.  I gave him lots of hugs, claps, and cheers.  Positive reinforcement is key.  He was frustrated but it was the first time that he really had to tell mommy what he wanted.  I felt like it was a huge success!
Since then I have been making him do this with every meal.  It is hard but he does understand.  Look at how well he is doing now!

He almost looks like he is enjoying it sometimes.  

I know that he can communicate with us.  At this point there is going to be a whole lot of resistance.  Bridger is used to having everything catered to him.  I am definitely a culprit.  Even when your baby isn't sick you cater to their every need.  Add sickness to that and they are like china dolls.  
Bridger's disorder does cause speech problems in most children.  I expect him to be behind.  However he proved that he DOES understand and that he CAN communicate.  So we're going to work even harder.  I expect a pretty grumpy baby for awhile but it is so-SO worth it.