Tuesday, September 17, 2013

Makes Us Nervous...

September 16th, 2013

We kept Aiden home from school due to him having two Dr.'s appts.  Around 10:30 I get a phone call from Dr. Haseebs office.  This is his Neurologist.  The lady tells me that Dr Haseeb has reviewed Aidens labs that we got drawn on Friday and that his Liver Enzymes are elevated.  She was calling to give me a " Heads up " that the Dr. will probably want to get more labs done in about 2 months.  Oh boy.... you all know how hard a task this is.  He actually did it very good on Friday though.....Thank GOD!  We have an Amazing Lab girl, who we always get a Frosty for her and Aiden after the labs are drawn, that's what ya do when you find someone this Awesome, and Aiden is a Trooper for sure, so he deserves a treat:-) Anywho, back to my point.  I have absolutely no clue what this means when she says they are elevated.  One would think that I would ask her, but I need someone to explain it to me that will actually care that in MY brain...I am FREAKING out!!  My Aunt explained that this means his liver is not doing what it should be, that it is not filtering his blood the way it should be.  I kept myself calm..one because Aiden was sitting right there and two...I just had to for a second until I hung up the phone.  I broke down..all that was going through my head was.. " his liver is not working the way it should ", Aiden had fallen asleep before I broke down, but I still went into my room, I just needed to.  I called Robbie because I knew he could calm me, he is Awesome like that.  I probably freaked him before he calmed me though, it's always fun when someone calls you sobbing and you are trying to understand them.  We decided that I should call our Awesome Lab girl " Dina ".  She is one of those women who as soon as you hear her voice you will cry and trust me when I say...I cried. This is a huge compliment, because right off the bat she calms you.  It's her sweetness that makes you cry, because I am talking to someone that to me actually cares.  She explained about how his levels are slightly high, but not to worry because he isn't wanting to get them re-drawn the very next day.  She told me to make sure I ask the Dr. just what this means, which I had planned on doing since the lady who called me gave me nothing else to work on.

I guess I should also tell you about his first appt. with the ENT Dr. and then move on to the rest of the day.  Back in 2011 when he had his first siezure and got an MRI done, they ended up finding something called Cholesterin something...sorry, totally forgot the exact name of it.  Basically it's some fluid like stuff behind his left ear on the inside that we just found out may be left over buildup from an infection from years ago.  We don't ever recall him having any infection. but ok we will go with it.  Our next thing to do is scheduling an MRI with contrast.  We explained to the Dr. that he would HAVE to be put to sleep due to his other medical issues.  Him being put to sleep scares us, but it's really our only option.  If the MRI comes back that this has not grown then it's as simple as we are done, if it has grown then that means surgery :-(  They will then go in and remove it.

Back to the Neurologist appt.
The nurse that we had was not happy that the lady who called me FREAKED me out and she said she was very sorry that it was handled like that.  Dr. Haseeb came in and explained that his liver levels have always been slightly elevated, which we knew, but now he is getting concerned.  He has taken Aiden off CoQ10, which he has been on to keep his heart strong due his Muscular Dystrophy.  Don't Freak, we are simply getting a head start, as of right now his heart is fine, just taking some precautions.  he is concerned that maybe the CoQ10 is keeping it elevated.  We will be getting labs drawn again in 6 weeks.  IF they have not changed, then we will make an appt. to come in and discuss changing his Trileptal to Keppra and having him go to a G.I. Dr. We are praying that we don't have to change his meds because that means we will have to ween him off them first.  That in itself scares the S*** out of us.  So I do something I probably shouldn't have.  I googled Keppra.........THAT scared the S*** out of me and Robbie when I read it to him.  Go ahead and Google Keppra and then Google Trileptal so you can see what I am talking about.  BIG difference in side affects.  We can handle Trileptal ones.  I mentioned to the Dr. that it makes me very nervous to A: ween him off and B: to switch 
He looked at us and said....I would rather him have a seizure, that we can handle, but we can NOT keep him on something that could ruin his liver...point made, Thank you!
This may not seem scary to you, but when it comes to your kids who mean the MOST to you and Dr.'s are talking about organs failing and then you look up meds and their side affects....WOW! it's a lot to take in.
Sorry if I scared anybody, but this Blog is my way of keeping info fresh in my brain, but believe it or not.....It's CRAZY just how much info and detail I keep front and center.  It's not just about my kids, it's all the info with and for regarding my Mama too.
Thank you, Thank you for all of your love and prayers

Monday, May 6, 2013

A New Diagnosis

  I have not written a blog in awhile, so here it goes with some updates on how our Duder Aiden is doing.  This school year is going soo good, we had some concerns but those got taken care of and answered.  Aiden's teacher was pretty excited to re-write his IEP goals.  Being at his old school we now realize and feel that his goals were so far past what his brain could do, much less comprehend.
  Now " Finally " it seems things are falling into place. 
So back in the Fall, well beginning of school year, me and Robbie started discussing more of our thoughts about there being something more going on with Aiden.  What I mean by this is...could there be aspects of Autism or Asbergers in there?  We have always thought about it, but just never really addressed it.  Sensory Integration has a lot of simalarities and that we already knew he has, but is there more to it?  We decided to contact his Dr that did the Pychological testing back in 2010 to see if we could get him tested for Autism/Asbergers.  We went to the first appt and answered A LOT of questions.  Then we had the next appt with the actual Dr., where we had to answer a bunch more questions.  At that appt. she answered our two questions.  He can't have Autism because his social skills are very high, anyone that knows him just knows that he is a social butterfly.  Next he can't have Asbergers simply because he had a speech delay.  Well we learned something.  We all decided that we still want him re-tested to see where he is from the last testing back in 2010, what can it hurt?  Aiden did the testing in record time, the answers may not have been correct, but he cooperated very well and did everything she asked.  She said he is such a delight to be around :) That's our boy!!

  April 3rd 2013.  Me and Robbie have our appt for the test results.  My stomach was in knots, something was telling me the results are different.  We go into her office chat for a bit and then we get down to business.  The first thing she said was about his I.Q. score and that is what we need to talk about first.  Again my heart sunk.  Back in 2010 his I.Q. was 64 which then he could have been diagnosed with Border line Mental Retardation, but because he scored higher in another category, she didn't diagnose him with that.  It ended up being Severe Cognitive Delays.  Since 2010 his I.Q. dropped 11 points.  That puts his I.Q. at 53, " Mental Retardation " that  score is not even on the I.Q. scale.  Severe Cognitive Delay is no longer the diagnosis.  At this I am not gonna lie, I started to cry.  Robbie says that once I start crying  you have lost me, I am no longer paying attention, Thank God for him <3.  Can you even imagine what is going through my head and Robbies at this time, but Robbie is holding tough for the both of us.  She then proceeds to tell us that this will always be his I.Q.  I know this may even be hard for you that are reading this and you are probably thinking " What "?  At 10 years old that is when a childs I.Q. platues.  Even his academic scores dropped.  We then ask her " does this have anything to do with his seizures " ?  She can't say 100% if it does or not simply because she is not a Neurologist, but she did say that with the time line of them and the last test that most likely it is.  How could it not be the reason?  He had 2 major seizures that lasted 25 minutes.  She said that when you have a seizure things shift and that is most likely why his academic scores dropped also.    What we now know is, his I.Q. can't change, but his academic scores can.  Being that we now have him in a program at a new school, with which in that class everything is repetitive is a very good thing.  We have known for years that Aiden's mentality is not exactly his age.  We don't always treat and respond to him as a 10 year old or whatever age he has been at that time.  We have figured him around 6-7 years old, we were slightly wrong.  The testing put him at 5 years old..academic and mentally.  Someone about 2 weeks prior to these results said to me,   " his disabilities only go so far ".  What???  So we asked the Dr.  " how do we explain this to our family and friends "?  We did tell her about that comment, and she said " well I think you guys need to have a family intervention ".  Have we done this you ask, " Nope "  We are at the point in our lives that if people are not gonna respect us as Aiden's parents and listen and respect HIM as a person, then you just don't need to be in our lives.  That may sound harsh, but we are his only parents and we are the ones who will defend him.  Our boys are our whole world.  She also said that the people who may end up being in denial are Grandparents and Parents.  The reason for this is back 50 years ago if you were diagnosed with this most likely you were put in an institute, pretty sad huh.  You were either "Educable" or " Uneducable ".  Things have changed drastically!!  I will take a picture of the sheet that explains the chart and put it in this blog tonight.  We have come to terms with the result, simply because " it is what it is ".  I hope that doesn't sound weird, but we have already been doing everything that we possibly think we can do.  The Dr. even looked at us and said the same thing.  Will Aiden live a full life and get married with kids?  Who knows, would we love that for him?  Hell yes!! Will he live with us forever?  Hey, if so, we are perfectly fine with that, there are typical kids that still live with their parents way into their 20's.  Robbie and I have said, we will always have Hope and this will not define him.  Family and Friends and also Us may just need to reevaluate how we respond to Aiden and just try to remember.....he is his actual age on the Outside, but a few years younger on the inside, in his brain.  So all we ask is that you all Please respect us as his Parents.  Nobody has every answer, we are learning continuously every day that this beautiful child is in our lives.  He is still the Aiden that everyone loves.  Another thing that just warms my heart, is that the most simple things that that make little kids giggle " Still " make him giggle.  That sound will NEVER get old :)