Hamilton Hams

Monday, January 9, 2012

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!

Friday, January 6, 2012

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.

Thursday, December 29, 2011

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!