My little "Over-Achiever"

I promised an up-beat post!

My sweet boy says five words consistently. Of those five, he has one that absolutely stands out above the others. "Nanna".

Yup, my mom has waited five years to have a grandchild who's first word was "Nanna". While it may not have been his first word, it sure is his favorite.

Here is just a small sample of his day.

It goes something like this:

9:00a Nanna
9:02a Nanna
9:06a Nanna
9:07a Nanna Nanna
9:08a Nannana
9:15a NanamommaNana
9:17a Nanna
9:18a MommaNanna
9:23a Nanna

Mom, you asked for it....you got it! :)

Little Yellow Post-it Note

I kept my composure today...not really sure how but I did it, but I made it.  Believe it or not, barely is actually enough to count as better then not at all.



The only things that were near me when the phone call from the genetic counselor came in was a tiny, little, tip-of-the-finger sized post-it note and a red pen.----I was only able to sketch out some illegible jargon.  When I hung up the phone, I took my itty-bitty note, folded it neatly, wiped away the tears and stuck it in my back pocket. 

This week is Mitochondrial Desease Awareness Week.



I miss her more today then ever before.  The little princess that once brightened my world with her gentle touch, keen smile and ever-lasting beauty now warms my heart with endless love and distant memories. Hard to believe nearly 8 months has passed since the last time she skipped and giggled all of her cares away.  My heart aches for her family. With each day that passes, I become more and more inspired by their faith, courage and strength. True Angels, I must say. I'm not sure how or why God brought us all together, but man am I ever grateful for their never-ending love and support for my family.

In all honestly (despite the cards that have been dealt) God truly is good to me...to Hayden and to my whole family.   Somewhere I must of really done something right to deserve the wonderful things in my life and to have the opportunity to share my life with such amazing people. The overwhelming amount of prayers, support and "fans" our little guy has is just absolutely incredible. I can genuinely say it helps us keep our head held high and give us the strength to never settle for anything less then the best with Hayden. 

Augh, I just want to throw up. *Deep sigh* I will stop rambling and get to the point.

As many of you know, Hayden saw the geneticist last week.  I will spare all of the details and sum it up in one sentance: We left with no more knowledge then what we came with.  The July labs were MIA, the August labs were having "technical difficulities",  So they checked his skin with a black light and sent us on our merry way.  Yes, we waited 5 months just for that....

It was frustrating---I was so angry.  Last week, I just needed to hear something... reassurance that I was not and am not losing my mind...This week I wish I could take that anger back and be grateful for "no news".  Juggling the perfect balance between needing to hear something and wanting to hear nothing is exhausting to say the least.

It has been determined that the lab results were enough to warrent further testing and another genetic consultation as soon as possible.  So, next week we are scheduled to take Hayden back to the hospital to run a Mithochondrial DNA test and further testing of amino acids.  Still not much of anything, except, more trips to the hospital, more needle pokes and more frustration.  Need stress? I've got plenty to last a decade, ten-fold.

Really, it could be anything.... or nothing at all. But, either way it doesn't ease the process for any of us nor does it help with my sleepless nights.

So tonight I am throwing away my little yellow post-it note --- and tomorrow I will try to think of a not-so-depressing post as that seems to be all I'm getting around to these days!

 

Peanut Butter Instincts

Sigh...

That was my sweet breath of relief.

I knew the moment my phone rang it was regarding Hayden. Besides, those who do know me best know that I don't answer when you call for me anyway!

The first call was nothing fancy. Hayden had a neurologist appointment last week. They increased his medication and referred us to a sleep specialist... I knew right away which specialist I wanted to see. Phoenix Children's Hospital has a pediatric neurologist that specializes in sleep disorders and seizure disorders. Vicky, the scheduling Coordinator had called to let me know that I could see the doctor of my choice. This doctor however had a wait list that seems decades long. So I chose another doctor and Hayden will see yet another specialist next month. This will be in addition to his appointment with the developmental pediatrician and our consultation with the geneticist. The next 30 days will be busy for us all!

Phone call number two: Sharon. Sharon was our PAS (preadmission screening) assessor. She came out to the house at the beginning of the month to assess Hayden's need for state services and state funded healthcare. In order to be eligible for Arizona long term care, a patient must be at a "nursing facility level of care " ( For the record, getting approved for long term care is not easy when you have such a cute kid!) As most people continue to tell me, Hayden is just fine, looks normal and has nothing going on with him. I would like to clarify, that Hayden is beautiful, nobody is normal and while Hayden has some challenges, they are not limitations or excuses.

Anyway, back to Sharon. Sharon was such a sweet lady; a bit ignorant when it came to autism, epilepsy and developmental disabilities. But she meant well and was a great support. Last we spoke she promised to call me the moment she had an answer... and she did. I usually let most calls go to voicemail. But when I saw the unknown number come up on my phone I had a feeling it would be her...and it was. Her voice was melancholy... my heart sank. To be honest, I am tired. People ask me how I am doing and I smile and I say all is well. But, I am mentally and emotionally exhausted.

After verifying some information, she said "I promised I would call you, so this has not been entered into the system yet. The moment I received the answer I stopped everything I was doing to let you know. The report here says that Hayden is "unstable" and "has significant needs medically and developmentally." So based on the physicians review, it is determined that he is eligible for ALTCs."

Yet another bitter sweet moment:

Nobody wants confirmation, yet again, that your child has special needs. But, words can't even describe the financial constraints that have been placed on us in effort to get Hayden all he needs. Doctors, Medicine, Therapy...it all adds up and it adds up quickly. The finances lead to tears, the tears to added stress and the stress to family challenges. I would like to say that a large load has been lifted...

But, I'm realistic. I know what comes next...more therapy, more appointments and the constant need to stay organized and focused. Our savings account has been wiped clean so on a bright note, we can at least now pair with the words "we can do this" and "we can make this happen"...and with that, yes a small load has been lifted.

Recently I came across the quote "The only way to take care of your children is to take care of yourself.". So, as stated in earlier post, I have made baby steps toward "taking care of myself". I was able to complete my 45-day challenge. 45 days, 43 injections, 500 calories = -23 lbs & -11 inches! Not bad, but there's still a long way to go! Today was my first day in phase 3 of the diet. Weird to eat 1300 instead of 500 calories. I actually counted down the minutes to getting my first taste of peanut butter. Yum....

Quick Follow Up to Hayden's Surgery

It was hoped that by removing his tonsils and adenoids he would sleep better. Which hasn't been a total waste because he has. Instead of waking up 8-9 times per night, he is only getting up 2-3 and having spontaneous nights of not getting up at all.. Exciting right?

Well, not so much.

The idea was that if Hayden sleeps, mommy sleeps..... again, not so much.

Turns out...

Hayden has two types of sleep apnea. 

Obstructive:

 

"Obstructive sleep apnea is a condition in which the flow of air pauses or decreases during breathing while you are asleep because the airway has become narrowed, blocked, or floppy."

Central:

"Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing."

It appears that the surgery has helped significantly with his obstructive sleep apnea. However, the obstructive sleep apnea was masking the intensity of his Central Sleep Apnea.  So those 2-3 "wake-ups" I mentioned.... are now full blown episodes of the exorcist.  The screaming, the crying, the shaking...as if he is awoken by a horrific nightmare. It usually takes Brandon and I both to calm him and lots of TLC.

Sigh...

As I described it to the doctor, he stopped me.  "His sleep apnea is neurological.  He probably wakes up to the sensation of suffocating.  There is no telling if this is related to his chromosome abnormality or if he will grow out of it. But some kids do grow out of it by the age of 3 or so.  In the mean time, we just wait.  Let's give it some time and see if it improves as he grows."

So here I sit again--- staring at his monitor....jumping up with every slight noise that I hear...and panicking when to much time has elapsed since he last moved....

Sleep? Yeah, that's over-rated.

Friday: Working Mom Blues

I am so fortunate to have the best parents in the world and my babies are even more fortunate to have them as their grandparents!

This week has been hard emotionally and physically. The diet is kicking my butt! I've managed to make it 10 days---full commitment, no cheating (not even once!). I've watched my son eat pop tarts, pizza pockets, macaroni and cheese, chocolate. And each time I make it through. I thought I was getting easier until I spent 2 hours and a meeting at Starbucks. I ordered....nothing! Sheesh that was hard!

I taught an emotional class today about the importance of early intervention, evidence-based treatment and parent participation. This obviously was not my first time teaching the class...however it was my first time teaching the class with my own child having been diagnosed at risk of Autism. Most of the parents in attendance were new to the diagnosis, and while I'm not new to "Autism" I am new to the reality of my son being at-risk....sigh (I'll just blame the 500 calories)!

But then I got to come home to these two cuties....Absolutely my favorite part of the day. I don't know what I did so right for God to bless me in the way he has but man, my kids are cute!

Quick iPad App Review: My Medical

Can I just say.... Amazing! I have found my new favorite App. I have added "take advantage of technology" to my Navigating the system tips, because with out all of these short cuts I am not sure where I would be!

I do realize I am a few years behind, so pardon my bizarre excitement as I work through the App Store!

Top on my list so far is an app called My Medical. This has saved me so much time. As many of you know, keeping track of records, appointments, medications etc. can be so difficult.  But with this App I am able to sinc all appointments with my iCalander, email pertinent information to myself or others in one step and keep track of questions that I have for upcoming doctors appointments.  I can even scan in records, reports, xrays, labs etc! 

As I've mentioned before, we are in the process of medical review for Arizona Long Term Care.   It took me 5 minutes to prepare all of the necessary information they needed (i.e. Doctors, addresses, phone numbers, next schedule appointment, hospital visits, last seizure etc).

Here is a wonderful review done by the App Whisperer. 

I also downloaded an app today on my iPhone:  Milebug   I haven't had a chance to use it, but I want to try to keep track of the medical appointments to make taxes a breeze! I will see how it works next week.

45-Day Challenge

This post will be about.... yours truly.

This weekend I took the kids up camping with my family. The weather was so beautiful! It sprinkled and there was a cool breeze. Hayden did okay. He has still been in a lot of pain from the surgery, so he wasn't at his best. All in all, we had a great time.

My brother Mike was camping, too! Man, I just can't express enough how proud I am of that guy! Mike took a 90 day challenge, committed to the P90X, and now looks absolutely phenomenal! Aside from the weight-loss, the muscle building, etc. Mike looks healthy and happy! He quit smoking and drinking (except he is able to have a low calorie beer on his binge days). Today marks day 80! What a stinking' accomplishment!

And what a huge motivation to get started on my own challenge! So, tomorrow starts day 1 of my 45-day challenge. I'm going to detox, eat clean and shed this baby fat once and for all!

(with a little guidance and support from San Tan Natural Medicine).

I have created self-management data sheets and a reinforcement schedule to keep me on track!

First reinforcer on the list... A pedicure!

Wish me luck!

Post Surgery Update

Hayden had his tonsils removed Tuesday to help alleviate some of the apnea episodes he is experiencing through the night.  The first 24 hours were spent in the hospital with dad.  How lucky this boy is to have a dad that is 100% devoted to him and his sister!  I kept the baby home as they wouldn't let her stay in the hospital room. They did let us go visit, and when he saw his sister he cracked the biggest smile (despite the pain and discomfort).  He immediately reached out his arms to hold her! Soo sweet!

The hospital staff was nervous sending him home yesterday.  It was hoped that he would eat a good breakfast and attempt to intake some fluids early in the morning.  But, he wasn't having anything to do with swallowing much of anything.  We were lucky they sent him home anyway!  We tried all day to get him to eat and drink with very little help. Last night was especially rough and finally at 2am he decided he was thirsty and hungry!  So we went downstairs and ate some broth, jello and Mandarin oranges!

I love that he has been in such good spirits through recovery. Last night I tried taking him to see fireworks, but he really wasn't interested...by the time they started he was so exhausted from the day he could barely hold his head up.

Little sister, however, enjoyed her first fourth of July. She is such a little ham!  Her giggle is dangerously contagious! 

Today Hayden managed an hours worth of therapy with his DSI, Ms. Jessica. He even cried when it was time for her to go. He has had Ms. Jessica come see him every week since November. She is a natural at implementing ABA techniques (although I'm not sure she knows it!). Today he colored, laced, completed a form box, signed "game", popped bubbles and receptively identified three animals! What a smart boy he is!

The unknown

I promised a blog tonight and got distracted... so I will try to be short and sweet.

We went to vegas this weekend to visit our brother-in-law, sister-in-law and niece.  All in all it was a fantastic trip.  Hayden took a little bit of time warming up to being away from home--but once he realized "this" (or "sis" as I like to call her) came with us he did just fine! My niece is just the cutest little thing and the kids were so much fun to watch together! We did, however, forget to bring tip jars to Freemont (apparently the kids are destined to be movie stars! What popular little things they were!)

The ending to the trip was not so grande.  I believe for those who follow babycenter you will understand when I say it was filled with Flying Monkeys and Unicorns! 

After much needed reflection during the trip home, I reminded myself that my focus really truly needs to be on my children and what is best for them. I am grateful for the support system we do have and welcome others who want to join us in this journey!

I am, however, done with non-sense drama. No exceptions.

Anyway, Yesterday Hayden saw the developmental pediatrician.

I guess what bothers me the most is the unknown.  We know he has a chromosome deletion...We recieved a report that confirms it is a deletion of 18q21.1...but we still have no idea what this means for Hayden! All of the conditions are fairly rare and research is still underway regarding the conditions.  I have been in contact with a genetic counselor from San Antonio. She is with the Chromosome 18 Registry and Research Society. I suppose it is a start...

We also did not qualify for Long Term Care-- so I have reapplied...

Lastly, Hayden did not pass the Modified Checklist For Autism in Toddlers (MCHAT) and has been listed as "at-risk". He will be further evaluated through the next month.

To be honest, I am not too concerned.

Let Go and Let God...

A few days ago a dear friend of my posted on her facebook status:

"Let go and Let God..."

Tonight I was spending some much needed snuggle time with my baby girl.  As I lay on the floor and listen to her sweet coos I asked myself how it was that two precious little things had completely captured my heart! 

Because the babies are only 13 months apart, the running joke is that my next one will be on it's way soon. Since we have gotten the news about Hayden, I have put a lot of thought into whether or not I would want more children. I would certainly want genetic counseling to just see if we are carriers of the chormosome deletion at the very least---and from there I want to assure that my husband and I make a very informed decision as to whether or not we decide to expand out family.

(For those of you who know me well, this probably comes as a surprise to you! That's right I went from wanting 6--to wanting 4--- to now being 100% happy if these are my only 2!)

Now, I am going to share a story that many people do not know.

When I found out I was pregnant again it was shortly after Hayden had been released from the hospital and right at the peak of his seizures. I was stressed...sad...scared... and I certainly was not expecting that news!   I kept very quiet during the first trimester. My husband supported my wishes to continue to have our focus on Hayden and his well-being at that time.  Together we decided to not tell anyone about the pregnancy until it was definite and until I had more time to organize my thoughts and feelings. 

I am not proud of my reaction. I look at my daughter now and think to myself "How for one second could anyone not want something so perfect."  But, I am also not ashamed to be honest with myself and my emotions.  I was angry.  I thought God was trying to punish me... I thought he was sending me a "replacement" for my little boy.

These feelings remained strong through most of the pregnancy.

As time went on the pressure did begin to ease...the excitement slowly evolved...

But, it wasn't until I held her in my arms that I finally realized-- She is not a replacement at all. She is a much needed addition to our little family. Yes, prior to her grand entrance, I didn't even know we had such a large part of our life missing.

So tonight, with my sweet baby girl in my arms I reflected on the past...and daydreamed about the furture.  It occured to me...all I need to do is let go.....and let God.

Parent of a child with Special Needs

Today I was just that.

I stepped out of my element for the day and attended a conference as a "parent of a child with special needs." I consciously made an effort to leave work at the door and be just "Mom".  I wanted to open my heart and my mind to the feelings, emotions and questions that are typically present when you have a child with special needs.  I wanted to relate to those that heart ache with worry for the future of their child...

With the absence of these feelings, I would like to clarify: I am not naive. Just confident. I had a father asked me if at any point I was in denial. There is no denying that Hayden has special needs.  Maybe it is because I will not let that define him; I will not let a diagnosis or a disability be his crutch.

Without a single doubt in my mind I know Hayden will grow to be something wonderful. 

I enjoy meeting other parents of children with special needs and will be spending some time looking for parent support groups and other bloggers going through similar situations such as mine.

Also, this week a dear friend of mine posted a blog pertaining to Autism Recovery.  Now, Hayden does not have Autism. However, her outlook inspires me to continue with my advocacy efforts and to push through the coordination of proper services, while always remembering that Hayden will be just fine the way he is, and I too am OK with that.


Today I was just "Mom".

Tricks from our silly clown!

Bittersweet

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."

-Ambrose Redmoon

This week has been bittersweet.

Again, I find myself unable to sleep...starring at the baby monitor...watching the movement of his chest.  Luckily sweet Tinsley has calmed down for the night. She's awake, cooing, smiling and reaching for her toys.

If I said I wasn't scared, I would be lying-- we are certainly being tested to the max.

Two weeks ago the neuropsychologist diagnosed Hayden with Expressive Communication Disorder and mild Sensory Integration Dysfunction.  Both manageable.....both treatable...

This news came as no surprise.

But on Tuesday we were taken back by some unexpected news and again challenged today with many unanswered questions.

Hayden's sleep study results came back.  Obstructive Sleep Apnea. In the past all of Hayden's specialist felt that there was no need to see an Ear,Nose & Throat Dr. (ENT) for his sleep issues because his tonsils and adenoids appear to be normal size. But due to this recent finding we will be seeing yet another doctor next week to explore options.  The developmental pediatrician would like surgery to be considered, but the course of treatment will ultimately be up to the ENT.

Today the neurologist let us know the results of his MRI and the DNA Microarray.  She was unable to let us know how the rest of his labs were as the results have not made their way back to her desk (not really sure how this happens, but apparently it does!).   The MRI indicated signs of Dysmyelination.  Because most of the mylenation occurs prior to the 3rd birthday they are unable to conclude whether or not this is a significant concern for his development, but the delay was noted as something they are going to be monitoring.  Dysmyelination is common in several disorders such as developmental delay and Autism.  In Hayden's case it actually runs hand in hand with the DNA results as well.  The DNA Microarray indicates that Hayden has a deletion of Chromosome 18. In fact he fits several of the traits of 18q- syndrome...

Unfortunately we are left without answers until we can get in to see a Geneticist for a proper diagnosis....

For a year now I have been so frustrated with not having answers to Hayden's seizures, sleeping issues, feeding issues and speech delay.  Until this week test after test had come back negative...on paper, he was normal.  I had been angry about the lack of answers....irritated with constantly hearing that he will grow out of the seizures and delays and that I am just a paranoid mom worrying over nothing....

This week I am angry that they didn't just tell us the results were normal...I guess I was expecting the same "everything is normal, we will see you in three months for a follow up." My heart sank...

A part of me wishes that I was over-exaggerating my concerns  and that I was just a crazy "first-time mom" worried about her little boy....

The other part of me feels some relief...some sense of confidence. Maybe I have knowledge of what is right and courage to stand up and fight when I know something is wrong.

Could this be our opportunity to get answers?  Will we finally have an idea of what to expect for our boy and his future?  
 

7 Acts of Kindness--In Loving Memory

Today was Big Al's birthday. She would have been 7 years old...but In February, courageous Big Al lost her battle with a seizure disorder...

The past few days I made it a point to complete 7 "random acts of kindness" in the pretty princess's memory.

Here is what I accomplished:

1. Time
My mom has been trying for weeks to get up to Show Low and visit her brother. This past Saturday she was ready to head up there but did not feel well and decided to cancel her trip out of fear of driving alone.
I had so many things to get done this weekend. Work, Grading finals, cleaning the house, doing the laundry...
You see, Al never had any worry about time. In her life there was already 25 hours in a day and she sure knew how to use each minute to its fullest. She never hurried, never skipped out on the little things that mattered...and she always made sure that she made time for everybody!
So, I cancelled my plans, sat aside all of the house work, loaded two babies in my Prius, picked up my mom and made the three hour drive! I couldn't have asked for a better way to spend weekend.

2. For Love
I am fortunate to have such a wonderful husband. He is an amazing father, works hard at his job and makes sure he helps around the house with any chores! Each day I come from work to happy babies and dinner on the table. This past weekend my husband was able to head out of town for a guys only camping and fishing trip.
Al always found a way to help around the house. She knew everything had a place and enjoyed stuffing drawers accordingly. When it was time to move Al mastered the art of dumping boxes. She was the first to take your purse when you walked through the door, and the one who always knew where your shoes were when it was time for you to leave.
So I may not have done it perfect, but I spent an evening completing my husbands chores--my way. I watered his garden, cleaned up his yard, pulled up the weeds, and took out the trash.

3. For Those Who Gave
Hayden started with his new speech therapist at the Lauren's Institute yesterday. I never really noticed how close their clinic was to my house, but so far I am satisfied with their services!
Al attended the Lauren's Institute for several therapies as well. They were good to her, and she loved going to hang out and play!
So this morning Hayden and I delivered donuts to the staff as a means of thanking those who gave their time, love and knowledge to Miss Al.

4. For Those Who Are Going To Give
It was always hard to find a good therapists and even harder to find someone who would stay. So in addition to donuts for the staff that gave their best to Al, I brought donuts to the new hire training class to thank them for doing their best to provide care for other children with special needs.

5. Just Because
The toilet at work had broke. Because we are an office of ladies, I typically offer my husband as a handy man! But not this time.
Ally liked cause and effect. She likes to see things change and she observed environmental change with such intent. She liked to watch reactions and repeat tasks to watch it again--oh the power of knowledge.
So today I googled the information necessary for me to complete this repair. I learned about toilets and the way that they work. I made a trip to home depot during my lunch break to purchase the pieces I needed. With a little trial and error, I was able to complete the repair. And yes, I'm quite certain the new hire class is convinced I'm the company janitor!

6. Appreciation
I had the opportunity to train three very special therapists. These providers spent many hours helping Al grow.
Each day when I would head over to her house I would stop at Starbucks (switched to Dunkin Donuts when they moved) to get myself some coffee in preparation for the long work day.
So today I sent anonymous Starbucks gift cards to these three individuals to thank them for caring for children with special needs.

7. Pay it Forward
My sister in law called to see if I would be willing to donate some of Hayden's clothes to a mother in need.
Al had the most beautiful dresses. It was always so much fun to play dress up and put bows in her hair. As Al grew out of her clothes, there were handed down to me for Tinsley to wear.
So, without hesitation...I paid it forward.

Hard to believe that she has been gone for 3 months. I miss her smile, her gentle tugs and believe it or not the smell of her mush (the crockpot melody of food she ate). Her laugh was contagious, her love without limitations...I sure hope she is enjoying her dance with the Angels.

Happy Birthday Ally--we love you!

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....