To Research or Not to Research--That is the Question

Little Girl Participates in Brain Mapping Research Project: MyFoxPHOENIX.com

Recently I traveled to Tucson and gave a presentation on Evidence-Based Practices and the importance of Comprehensive Evaluations and Program Development.  One of my co-presenters that night was Dr. Sydney Rice, a well known Developmental Pediatrician and a member of the CDC Autism Survelence Study.  As part of her presentation, she discussed the options parents have of using thier specific experiences, children's records, conditions and/or treatment approaches for research purposes.  I can see where this wouldn't be for everybody--but I sure do appreciate the opportunties these families have provided.  My focus in life is to give and to share---seems like this little girls and I have a few things in common.

Long Week, Longer Weekend

Here is the latest update on Hayden:



As of Friday his flu-like symptoms had not improved. He was dizzy, clumsy and still running a fever so we took him to the Dr. She sent us home with 24 hours of Zofran and instructions to follow a strict BRAT diet.



On Saturday his symptoms remained the same--poor baby was miserable. He hadn't vomited thanks to the Zofran but he had the worst case of Diarrhea I had ever seen! We took him into Phoenix Children's Hospital Urgent Care Clinic that night and were told that since he was acting normal he was probably on the tail end of his sickness and that we should discontinue the Zofran as well.



Sunday was a long day. He was still vomiting, still had diarrhea, but by now he was no longer urinating. The triage nurse said to take him in after 12 hours of dry diapers, but he wasn't lethargic and his appetite was up--so we waited.  Hayden went all day with short cat naps—he had no interest in playing or eating and drank a total of 12 oz all day! At the 24 hour mark it was time to go back in—this time we decided to try the new Gilbert ER based on the recommendation of dear friend.  We are glad that we did!  The staff was fantastic!

Of all of the hospitals I have ever been in, this is the first time I've seen all male staff!

 (When Hayden was hospitalized at 4 months, our favorite nurse was Pete in the PICU!)

There were so sweet with Hayden and everyone adored his sweet smile.  They were amazed at how well he laid there for x-rays and the CT scan. They even discovered that he didn’t need to be wrapped because he would lay real still for the IV pokes—Yes, there were two total, both unsuccessful.  According to the hospital policy, each RN and LPN could attempt the IV at least twice. Luckily, they picked their best staff member to try and when she couldn’t get it they all agreed it was not going to be possible without the ultrasound equipment (which would have meant moving to another hospital).

Showing off his new gown!

It's not very much fun being sick!

Trying to stay awake with hopes of going home soon!

The x-rays showed a lot of intestinal inflammation (of which they were amazed that Hayden was not in more pain) and we were given a diagnosis of the Rotavirus.  After just some routine tests and a urine sample, they sent us home with pain meds, Zofran and the instructions of following a strict clear liquid diet for the next 48 hours.



So,what was the secret to get him to lay so still?

He loves to slide through the pictures of little sister!

How lucky am I that my son’s favorite thing in the whole world is his baby sister! As soon as we got home, both kids were tired—but we had to let Hayden have cuddle time with the baby so he would fall asleep!

Pink and Flu

Yup, I said it pink eye and the flu---

Really?!

Poor Hayden puked in his sleep last night---didn't even make a peep.  What a scary thing to wake up to--he will be sleeping with Daddy tonight to make sure we can keep an eye out on him. It's been a while since we have had a night like this--- every time he moves or coughs his dad and I both jump out of bed... sleep is overrated any (just ask Hayden)

Poor guy...

Needless to say, my husband had a lot of cleaning up to do today. Hayden has been unable to get and/or keep any fluids or foods down.  We just give him his third dose of Keppra, of which he just puked back up.  Poor guy has streams of vomit running out of his nose, causing it to bleed and all he wants to do is snuggle with daddy.

Hayden and his night-night friends

So, I put in a call to the pediatrician. Since it was after hours I just got the recording.

I called his neurologist after hours line.....apparently, with diarrhea and vomitting the Keppra won't absorb anyway--so we have been advised to keep his emergency meds on hand be prepared to call 9-11. 

Thanks for nothing!!

Did I mention pink eye? Yes, ooey gooey pink eye is what little sister has!

Good thing Ms. Alissa sent me Starbucks e-gift card today, I'm going to need it to make it through my meetings tomorrow!! Thanks girl!! (The Joys of Networking!)

Monday, Monday: Why so Blue!

I'll be honest, today I am a bit blue.  I think I am just tired---overbooked and overworked. I'm not complaining though, I am blessed to have all that I do-- today was just one of those challanges that will make me a better person. Most of what little free time I had today  (between work and the babies) was spent on the phone with doctor offices, insurance companies, etc.  Just getting redundant and taxing...

I wear my stress and anxiety well--

It wasn't always this way. In fact, it has taken a lot of practice! But, most of those that know me well enough have already called and checked in on me...Apparently when I'm quiet it stands out! I promise I am okay and so is my wonderful little family.  In fact, I have some good news to share.

I'm....

Not Pregnant (just so we are clear)  

But..

I'm happy to announce that my sweet baby boy got a clean bill of heart health from the cardiologist.  Apparently the arrythmia they are hearing is from his heart being so strong and working so well. They even told him he may be a great athlete some day!

Sitting for the EKG

Watching his blood pressue

Science, Ethics & Seizures

You probably can not see it from the mobile site, but for those using a Mac or PC I follow a few feeds that are beneficial to raising a child(ren) with special needs.  I am a strong adovocate of Applied Behavior Analysis, Evidence-Based & Ethical treatment.  Recently I descovered a fellow blogger who has shared some very significant information/issues pertaining to seizures. Thank you Missy @ Applied Behavioral Strategies for sharing your story and adovocating for science!

The Hippocratic Oath



MMR: Increase Risk of Febrile Seizures

    Here is the link to the article she is referring to: Measles-containing Vaccines

Cornstarch (Papa is a boy's best friend)

Hayden is staying the night at Nana and papa's house tonight. I have come a long way with regard to sleepovers. Afterall, it has only been less than 6 months since he has been off of his monitor.

Hayden had his first sleepover without me the day his sister was born--And we let him have another when he wanted to stay with papa a few nights ago. Tonight makes sleepover #3. I have to remind myself that I trust my parents, they are just down the street and Hayden loves being with them.  Under any other circumstances, I am not sure I would be as comfortable (or if I would even allow it at all!).

This week I have been working a booth at the savvy mommy's sale, so I've had the pleasure of taking little sister to work with me. The ladies have all adored her, and during the day she is such a good low-maintenance baby. She has spent her time attracting people to our booth with all of her cuteness!

While at work I came across this:



Fitting.....

Shortly after, this is the picture I received:

Yes, That would be corn starch at Papa's house!

Seizures

This is where we were on this same day last year (4/13)

Cardon's Children Hospital

 As sad as these pictures are, I just can't help but smile at how cute this little guy was!! He was such a trooper.

I remember the phone call.

I was interviewing a prospective employee (now an awesome friend and great support!) when my husband told me the news, "Hayden had a seizure." after only having him  in my arms four short months, it still felt like my whole world came crashing down. My initial thought was to call my good friend Jennifer--she would know what to do and where to go. Jennifer had been there before with her own child at a similar age and under similar circumstances. I am not sure what I would have done without the support of Jennifer.


Four months old? How does this happen?


A large part of me was hoping the shots he had just two days before had raised his body temperature causing a febrile seizure. Not that I would want to wish any seizure on my child, but if I had to chose, I would want one that atleast came with an explanation. I dreaded the thought of my sweet baby boy having to go through life with hardships.

The rest...well that is sort of a blur.

Initially I remember the Emergency room doctor saying "he looks just like a normal baby. You know, babies do funny things."  His reaction puzzled me.

Funny things?
I am not sure how he found any of this funny but his nonchalant demeanor ended quickly when Hayden had another seizure in the emergency room. My reaction was not something I am proud of: I ran, I screamed, and I cried. Through my tears I remember the doctor and nursing staff standing around the bed just staring at him. The doctor shook his head "this is not normal, this is not okay. Something is not right.". All I could get out was "do something with my baby, don't just stand there"

My heart is heavy thinking about it.

Anyway, here's how we got started with our adventure with epilepsy....