What have I been doing recently?

I have an upcoming medical appointment at Hershey's Feeding Clinic this week to address John's selective eating disorder.  I was told by an assistant that John's diet is considered to be a "white foods" diet.  This is typically what John eats:  Martin's potato bread (2 slices), diluted apple juice, Kellogg's Krave cereal (chocolate is his favorite color!), banana (but has to be just the right texture).  I figured that John liked foods of the yellowish spectrum.  What it boils down to is that John has preferences for specific colors and/or textures to satisfy his sensory disorder.  Now, John has not been officially diagnosed with either.  However, John can not stand to get a bath as the water "tickles".

I recently had John's school psychologist meet with him to review his skills for the kindergarten 2012-2013 school year.  She is pretty certain that John has auditory processing disorders.  They do go hand-in-hand with the sensory disorder.

I have met with John's pediatric neurologist twice as of now.  However, the only diagnoses that he can muster is: moderate receptive/expressive speech delay; globally developmentally delayed; and disruptive behavior disorder.

John has MUCH more going on than just what the pediatric neurologist has diagnosed him with.  I'm getting "cop-out" diagnoses.  In other words, he is not entirely sure what is going on with John.  Now, our media wants us, as parents, to seek out an early diagnosis for our children so that they can start getting the help that they need.  Come on!  I've been trying to get help since John was 18 months old and lost his speech!  My pediatrician said, "Wait until it's a problem."  At our 2 yr appointment, he said, "Wait until it's a problem."  Well, that's all it took for me!  I paid $700 out of pocket after 1 of 2 insurances paid for a speech evaluation/services.  I found out that he was approximately 1 year delayed on his speech.  At that time, I was directed to our local state agency that will send therapists to the home FOR FREE, regardless of the parent(s)' insurance situation and ability to pay.  We started with a speech therapist.  She saw a need for an occupational therapist.  She then saw a need for a special instructor as John's fine motor skills were not developed.  Gross motor skills are great!  We then had 3 people coming into our home 3 different days of the week.  We sat down and discussed his lack of social skills and agreed to move him into the agency's local preschool for children with special needs.  John was recently evaluated by the school psychologist as being almost above average in nonverbal, but below average in verbal skills.  It appears to her that he is equivalent to a child that has never attended preschool.  Nice.  He has been in preschool since he was 3 years old.  I was then told about the auditory processing disorder being a possibility.  I contacted our ENT and he was too young to evaluate.  I spoke to the lady that performed his hearing test and she agreed that he was too young and the fact that he is developmentally delayed means that we should probably wait until he is 7 years old to perform this test.  Nice.

I am hearing from society, as a parent, I need to pursue an early diagnosis for John.  HOW?!?  I feel that I have DONE EVERYTHING up til now!

I have to agree that he probably does have auditory processing disorder.  There is a LOT of fighting between John and his 3 yr old brother.  Jacob will NOT be quiet and his incessant talking drives John CRAZY!  John is completely addicted to video games due to the fact that it repeats.  He loves things that repeat.  However, he can NOT concentrate when people are talking within his vicinity.  When he gets in the car, he will complain that the radio is too loud.  It is not.  It is to HIM, though.  He also has problems with restaurants, etc. with the noise levels.  That is when he will have disruptive behavior.

Based on what I know, does it sound to me like he has autism?  Sure, it does.  However, there is such a difference of opinions on this subject and if my pediatric neurologist does not agree.......then I guess it's true, right?  John is not autistic?  It's funny, b/c as soon as I contacted the Hershey's Feeding Clinic, I was asked immediately if John was autistic. I told them that he had not yet been diagnosed and we shall leave it at that. It's always possible that John is just developmentally delayed. He has great eye contact and will communicate.....so folks discount autism as being a possibility. Ok, then tell me what it IS so that I can help my son!!!

I have John set up with his IEP for our local public school system. There are 13 categories that your child MUST fall into in order to receive specially designed instruction. He falls into speech (obviously) and learning disability (the psychologist thinks he has APD, remember?). I will meet with the IEP committee in a few weeks to discuss the exact plan for John's education.

There is SO MUCH that we can do for our children, but you have to remain actively involved in their lives and seek out education and medical assistance! I have had so many people ask me if John has a medical card. I still don't understand what that is about, but I have a funny feeling that I will find out soon enough. Just think....if I had been that parent that listened to my pediatrician and waited until it was a problem....think of where we would be NOW! John would be MUCH MORE DELAYED in SEVERAL aspects of his life! We saw his pediatrician in February 2012 and he watched John spinning around next to the wall and listened about John's selective eating.......he now thinks that John MIGHT BE AUTISTIC......BUT.....let's wait and see how he performs in the classroom first! REALLY?!? Let him fail first?! Luckily, I have pursued this YEARS before now and John is set up with an IEP to help him to transition into the classroom and be taught in a specific manner!

Research Research RESEARCH!

Before you venture out into the retail environment....whether it is to shop online or shop outside of your home....RESEARCH!  I have just learned about a rebate that I thought was okay to mention online.  There is actually small print stating that we are not allowed to re-transmit this information online to alert any of our friends, neighbors, co-workers, etc.  This is an awesome rebate, too!

My best suggestion would be to always use your search engine when trying to save money.  This rebate, that we dare not speak its name, is definitely available by search engine!  Make a list of items that you love to use around the house.  Go to their website.  Call their customer service department. Ask for coupons....nicely, please!  I have no shame in asking.  I am not afraid of hearing, "No, we do not offer coupons through the mail anymore."  I might just hear, "Sure we offer coupons!  What is your address?"  Watch your local grocery ads for awesome sales!  Check on www.savingstar.com for money to be deposited into your account for using your loyalty card when you check out on certain items (yes, you can use it in addition to store coupons, manufacturer coupons, catalinas, and special "instant" savings offers!).  So what do you do after that?  Save your receipt!  You may just want to save your UPCs as well!  Check from time to time online for rebates for that item!  Rebates usually go on for a period of time, so you have time to get your information together.  There are some blogs that will encourage you to set aside your rebate money for a vacation, shopping trip, etc.  Think about it!  This is money that you would not have had otherwise!  Pretty awesome!

My next piece of advice is to "like" the item's Facebook and Twitter pages.  You never know when a great coupon or sample might be released that you could use!  It will show up in your newsfeed and you will be one of the first to know about it!

I love to go to www.vocalpoint.com and www.smiley360.com and www.bzzagent.com to try new products.  If you like to have parties, you can also sign up at www.houseparty.com and they have the coolest items in party package sizes for you AND your friends to try when new things come out!  RESEARCH, PEOPLE!  =)

What did I do today?

Well, I received 2 boxes of Pull-ups from www.amazon.com.  I place my orders through "subscribe and save" and sometimes, it ends up cheaper than purchasing with a coupon at Walmart!

I have spent most of my day online taking my free computer class for part of my Act 48 hours to maintain my teaching license.  This class is worth 15 hours and it is FREE!  I just look through my state department of education website to locate the free classes.  I need 178 hours before this class!  I am a little aggravated that part of our assignments include posting a discussion topic on a forum.  Then, we are required to respond to another person's topic.  The other people taking the class are simply quoting things that we were required to read!  WHAT am I going to respond to?  They do not have an opinion!  UGH!

Sick =(

I was at CVS pharmacy the night before last night.  I was trying to get my prescription filled when a man approached me to wait for his pick-up.  Instead of standing behind me and giving me some personal space, he stood beside me barking like a dog!  Then, he proceeded to tell folks (who were being polite and waiting BEHIND me) all about some kid that sneezed in HIS face to make HIM sick!  Really?!?

Guess what?!  I've been sick since last night!  Thank you Mr. Man.  I appreciate that so much.  Exactly HOW did I deserve to receive this man's karma?!  I have been lethargic, had chest discomfort, shallow breathing, and coughing.  Yes, I have had my flu shot around October 2011.

My children have both had the stomach virus that is going around, but this is definitely not that.  They had theirs for about 1 week each.  It's a nasty virus, y'all!

Update About My Husband's "Ticker"

My husband completed his heart catheterization and 12 weeks of cardiac rehab afterwards.  His nurses were so glad to see him graduate!  He was such a pain to them LOL!  A good pain!  He graduated from the cardiac rehab program in Nov 2011.

At the beginning of Dec 2011, he began to experience a chest pain that reminded him of the pain from Aug 2011 (which was a 90% widow-maker blockage.....meaning: blockage at the top of the heart that allowed only 5 min of response time to get help before he would die).  This chest pain was described as a pain that was high up in his chest and made him feel like he was going to vomit.  He usually experienced this after going up the stairs.

Since my husband already had a cardiologist following his progress, we returned immediately to him on Dec 8, 2011.  He wanted to immediately hospitalize him, but my husband is a busybody and wanted to spend time with his young sons instead.  He was admitted for his second heart catheterization on Dec 12, 2011.  Guess what they found?  Yep, the same 90% widow-maker blockage!  The stent had failed.  We had a choice of stenting the stent or single bypass using the mammary vessel near the heart.  I spent the entire weekend researching this before he ever had the heart cath.  There was no real evidence showing that stenting a stent was 100% successful.  The alternative of a single bypass terrified me based on his response to the stent in August.  He had  had a severe vasovagal episode that involved Atropine to revive him!  My husband and I had made a joint decision BEFORE he underwent the heart cath.  I was/am his voice when he is under any anesthesia or medication.  I speak FOR him when he can not do so.  We agreed that he would have the single heart bypass in order to extend the years that he could spend with our children and me.

Dec 13, 2011.....We were in the Open Heart Unit waiting for his heart surgeon.....waiting......waiting......waiting.....finally told at 2p that he would be having surgery, but his surgeon would be a different surgeon.  It started around 2-3p and I was finally called around 5p.  Since I had researched online, my FIRST question was, "Was his heart on or off of the machine?"  The complications are very different for each.  His heart was ON machine for 14 minutes.  This means that the surgeon had stopped my husband's heart.  That devastates me at the thought.  The heart and lungs were "controlled" by a machine during this time.  This makes it easier for the surgeon to do the bypass with the heart being STILL.  What was very odd to me was this RUSH that I had in the waiting area.  I was relaxed (as much as I could be) and suddenly....there were all of these moments, literally, RUSHING through my head!  These were the happiest moments of our lives!  The odd part is that they didn't feel like "my" thoughts.  I honestly believe to this day that they were my husband's thoughts while his heart was still!  I got extremely nervous after that, but then I got the call saying that he was in the Critical Care Unit.  Ahhh finally!  I can't begin to tell you how relieved I was!  However, nothing could've prepared me for seeing my husband covered in tubes and a machine still breathing for him.  I kept brushing my fingers through his hair, touching his hand, rubbing his cheeks, talking to him, etc.  I kept trying to get him to wake up enough or get mad enough to start breathing on his own.  I wanted to be there when he woke up so that he would not panic from the breathing tube.

I was told at 6p that they would be closing Critical Care to the families while the nurses changed shifts until 8p.  I drove an hour back to our house (through dark mountain roads) to eat, bathe, check on the children (and my oldest that is 20 yrs old and now raising them in my absence), etc.  I called the CCU at 10p to check on him.  I informed them that I was about to leave my house and explained the long drive.  I was told that I was not allowed back in once I had left the hospital until....9a!  Good information to have had!  Of course, he woke up WITHOUT ME THERE!  I still feel guilty from leaving the hospital.  That was a stupid rule.  They should welcome family for the recovery of their patients at any time!  I understand the shift change....just not the rest.

Was the breathing tube the worst part?  Ummm NO.  He had 3 chest tubes that eventually had to be removed.  His RN removed those approx 2 days after the surgery.  She warned me that I might have to scrape him off of the ceiling.  Here is a big, strong, outdoorsy guy that I can't picture EVER being in pain.....yea right!  This little woman practically (not really) put her foot on him and grabbed all 3 chest tubes and YANKED them out of him.......these 1" diameter garden hose looking tubes!  All at ONE TIME!  I had him holding my hand and he dug those "man" nails down into my  hand OMG I just let him dig right in and he actually scarred it!  I kept letting him dig in.  I can't imagine the pain he felt!  She had given him morphine 15 min prior, too!

Yep - Everyone L♥VES a little CrAzY!!

I'm still toying with the idea of telling too many folks about even HAVING a blog!  haha  It appears to be involved at times with the maintenance, the fussiness of followers, the stress of trying to keep up with any coupons/deals, etc.  However, I LOVE to randomly ramble on about various topics!  My life is crazy with all that goes on and I have been told on SEVERAL occasions that I should write a book about my life!  Folks don't believe that I've had such a stream of bad luck here and there....it ain't all bad though LOL  It's the nice things in life that keep me going!  My kids have the cutest smiles and love to hug!  There are lots of surprises as a mom/wife!  My husband just made me supper tonight WOOHOO!  Ham and baked potato!!  Thought I was gonna hafta fight our family dog off of the smell of my ham, though!  Have a good night!

Big news!

Joe is having a heart catheterization tomorrow.  He has been struggling with chest discomfort again.  He had his first hearth catheterization on 8/19/11.  We were told from his cardiologist that he had a widowmaker blockage.  This was the ONLY blockage that Joe had, too!  He would have had 5 minutes to receive medical assistance before his heart would sustain permanent injury from lack of blood flow.  This blockage is situated at the top of the heart and would have starved the rest of it.  Joe and the cardiologist agreed during the cath procedure that a stent would be the best quick fix.  Joe has never missed a day of medication or his cardiac rehab.  At the end of his rehab, they contacted the cardiologist to try a different medication as his bp was not going down.  It was not until last week that he started his new medication.  I'm hopeful that it's the new medicine causing his discomfort, but the cardiologist disagrees.  He wants to admit him tomorrow morning.  He actually offered to admit him on Thursday during his office visit.  Joe wanted to get some extra time with his boys and finish some things up at home beforehand.  He also got a chance to apply for two positions at work this weekend. 

If the cardiologist finds anything wrong, he has given us the following two options:  stent the stent.....or bypass.  The cardiologist is recommending the open heart surgery.  I do not yet know if he intends on the ON machine approach or the OFF machine approach.  We do not yet know if the discomfort is deriving from a separate blockage or if it is the widowmaker blockage again.  This will definitely affect the outcome from tomorrow's heart cath appointment.  He might be staying for one day.  He might be staying for one week.  I have his medical directive copied and ready to go for tomorrow.  I do dread having to make any life or death decisions about my husband and my boys' Daddy!  He is everything to us!!  Please, keep us in your prayers!