National Institute of Health Day 2

Today was the big day of tests.  We arrived at the Clinic at 7 am and by 8 they had taken Ethan back for sedation.  This was the first time I have ever been allowed all the way back and stayed with him until he was asleep.  I can't decide if I like that or not.  Either way,  handing over your baby to doctors sucks.  No other way to put it ...

During his 5 hour sedation he had a spinal tap, skin biopsy, inner eye exam and MRI.  While he was having his procedure done, Chris and I went and they took our blood to use in the Genome study that they are doing. 

Ethan had a difficult time waking up from the anesthesia this time.  That was a first for us.

After he finally woke up we went back to our room.  After about an hour we noticed he was very pale, we found out that his iron was very low.  They decided he needed a 4 hour IV drip and some iron to help him recover quicker.

Around 4 this afternoon he started running a fever - 103.  He has had Advil and the fever has still not broken.  Although, his spirits are great tonight!  The doctors told us that some children do run a temp after sedation due to the type of drug that is used.  Propofol (yep that same stuff that Michael Jackson took).  They said if he still has it in 24 hours than we can start to think about infection...so praying that he is just having a "typical" reaction to the drug!

All in all it was a long exhausting day.  We did get to have "facetime" with the other kids which was awesome! I miss them very much.

Special thanks to Rompy tonight for taking such good care of our Sweet Ethan, he never left his side all day!

National Institute of Health - Day 1

We arrived this morning to the clinic at 7:30, we went through admissions and settled into our room in the children's unit.



We met with 4 members of our team, a Nurse Practitioner, Nurse, Genetic Doctor and Dental Resident.  They took our history and Ethan's history and did a physical on Ethan.  It it is so strange what genetic doctor's look for that we would never even think about - such as the way your hair swirls and the growth pattern of your hair swirl...strange huh?

The doctor's love to check out his "special" ear!

Next up was a blood draw - all 13 viles of it!  They will be testing it for so many different things, things I have never heard of. Ethan has had 35 other genetic tests and honestly I thought he had been tested for everything that was possible to be tested for...but I guess not!

He obviously was not a happy camper after that, but who can blame him?

 

He decided he needed a little break, so he took a nice little nap!

This is Ethan's mode of transportation at the clinic when he goes from appointment to appointment.

He loves it!

After lunch he had an EKG and Echo and did great!  They are very good here with the kids, very patient and caring.  They put his favorite Baby Einstein Movie in during his procedure and he was good to go!

We finished up at the clinic around 6 and came back over to The Children's Inn and checked his "mailbox" and he was very excited to get mail - a cool chalkboard to keep him busy!

Oh and Ethan got to see snow today, big bonus!  Tomorrow is a big day, he will be sedated for 3 hours and have a MRI, inner eye exam, skin biopsy and lumbar puncture.  It's been a while since I have had to hand my baby off to a nurse to go in for a procedure without me so I'm not looking forward to it!

















Go Go Go

Tonight I am sitting here trying to figure out how to title this post.  Ethan is laying on the bed next to me running his cars up and down Chris's legs and yelling Go Go Go.  The girls are down the hall waiting to find out who is going to be the Family Wizard and Jake is hanging with a friend. 

My heart is heavy and my contacts are all fuzzy from all the crying that I did today.  Gracie and I along with many other families, adults and children with Intellectual Disabilities/Developmental Delays sat in on the The House Appropriations Committee and Senate Finance Committee public hearings to tell them our stories of why we must End The Wait for ID/DD Medicaid Waivers in the State of VA. I was so proud of Gracie, she stood up in front of those "old men" as she called them along with two other siblings to show her support for her brother while a teenage boy told the story of his twin sister...how he worries about her and what her life will become without the state's help. 

Governor McDonnell's budget has no commitment to fund new waiver spots until July 1, 2014.  Right now 7,000 individuals with Intellectual Disability or Developmental Disability are on a waiting list just to get a waiver of those 7,000, Sweet Ethan is just 1.  3,000 of those on the waiting list are considered urgent - some examples of urgent need include living with an aging or ill caregiver, risk of homelessness and risk of abuse, neglect and exploitation.

Mothers, Fathers, Sisters, Brothers, Teachers all got up for 3 minutes each and told their story.  They told of their child being on a list for 15 or more years, they worried about how they would take care of their child once they are gone.  What will happen to them?  Institutions...well, plenty of stories were told about those institutions ...patients being beaten, staved and neglected.  Can you imagine raising your child and knowing that as you age and are no longer able to care for your adult child with a disability this is what would happen to your child? I can tell you that the answer for me is NO!

Ethan is 3 and I will start fighting now to make sure he is taken care of when I can't take care of him any longer...so as Ethan says "GO GO GO"  That is what I will do...

To learn more about our fight go here Virginia Budget Hearings.

Hello....

Long time no blog!  One of my New Years Resolutions is to blog at least once a week.  Believe it or not I use this blog to track Ethan's Medical History, we are in the process of getting ready for our first trip to the National Institute of Health in a couple of weeks.  Ethan has been accepted into the Undiagnosed Disease Program.  I have had to gather a ton of info and was able to pull a lot of it from my entries. 

My family from out of state also likes to read our blog and catch up on all the kiddos!  Here is recap of the Fall/Winter of 2011:

Jake - started 5th grade, played a fun season of football,was an Usher at my Little Sister's Wedding, Celebrated his 11th Birthday was his 2 Best Friends and Dad by going out for wings and go carting because he informed us that he is just too old for a birthday party, took his first communion and is almost as tall as me....

Gracie - started 3rd grade, was an amazing Rebel's Cheerleader,was a Junior Bridesmaid at my Little Sister's Wedding, Celebrated her 9th Birthday by having a Spa Sleepover with 13 girls, played Mary in the Christmas Eve Pageant at Church and has the most giving and loving heart of anyone I have ever met.

Anna Claire - started Pre-K, started taking Gymnastics (which she LOVES), went to her first Nascar race with her Bestie, got her first Pedicure, was a flower girl at my Little Sister's Wedding, Celebrated her 5th Birthday by having a triple birthday party with her 2 Besties and has a sassy and silly style all of her own!

Ethan- started Preschool, turned 3, continues to Love his Romp n Roll Classes, has started communicating with  more words, walking all over the place with and without his walker, took his first tractor ride and was not afraid of the loud  noise (big huge step for him) and continues to amaze us every day!

It's been an amazing year filled with tons of love and great accomplishment.  Here's hoping 2012 is even better!

 

Big News....

Jake started 5th grade (last year of elementary, boo hoo hoo) Gracie started 3rd grade

 Anna Claire started Pre-K

and Ethan, well,  see for yourself....