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!