Saturday, April 7, 2012

Psych Appointment

Yesterday we met with a Child Psychologist at Children's Hospital.  We have to get our hands around how to deal with Ethan's behavior issues.  When we were at NIH they did a lot of testing and one of the tests (Mullens) showed that Ethan's developmental age is 16-19 months. She shed some light on things...

Ethan is just beginning to enter the "terrible" twos.  It is going to be hard, really really hard.  He is a big kid who is acting like a baby.  I never really thought of that until she said it.  Ethan constantly wants to be held, carried, hugged, rubbed and needs constant attention.  The first two years of his life Ethan could have cared less if you held or snuggled him.  In fact until he was about 2.5 years old he never even held his arms out for you to hold him.  We have to remember that when  he is "acting" out.  We need help in the evenings but we don't have enough "hours" of care to get the help we need.  When his aide leaves in the afternoon Chris or I have to give him our 100% attention and that means that one of the other three kids doesn't get what they need from us.  Sucks...really really bad.  We will figure it out...

She is meeting with Ethan next week all by himself.  The following week she will meet with Chris and me to determine a "plan" and go from there.  She mentioned that because we don't know why Ethan is the way he is that we are doing a good thing by trying to figure out the best thing for him now.  As I left the hospital I passed a child who looked about 17 or 18 who was so excited about a stuffed bunny that he had.  He was acting like Ethan does when he is excited.  I had a glimpse of my future if Ethan doesn't progress.  Ethan didn't' pass his educational or speech goals.  He is going to summer school.  We will continue to look for answers and do everything in our power to give him the best life possible just like we will for the his brother and sisters.

She is going to

Wednesday, March 21, 2012

Special Olympics

Now that Ethan is moving around more he loves to "play", he loves the playground especially!

I looked around for some activities that would be a good fit for Ethan and found that Special Olympics has a program for "Young Athletes".  The program is for children with Intellectual and/or physical disabilities who are age 2-7.  The nearest class was 25 minutes from our house.  I knew that in our area we have a lot of children who could benefit from this type of class so I reached out the Special Olympics and learned what needed to be done to get a group up and rolling in Hanover.  One thing I have learned during the last 3.5 years is that if I can't find what Ethan needs I will just jump in and create what he needs!

After some research and begging (just kidding, no begging needed, everyone wanted to help)  I was able to get some great volunteers who are students at VCU studying Physical Therapy to volunteer for a once a month class and American Family graciously allowed us to use their exercise room.

Last month we had our first class and it was a success!!!

Can't wait until April for our next class!  To learn more about Special Olympics find us on facebook at Special Olympics - Young Athletes Hanover County!

Thursday, March 15, 2012

Step up to the Plate Virginia

Remember when I blogged in January how proud of Gracie I was when she stood up front of the The House Appropriations Committee and Senate Finance Committee public hearings and stood up for her brother who is just one of 7,000 individuals with an Intellectual or Developmental Disability who are on a waiting list to receive a waiver from the sate?  Remember the news clip that went viral and showed me crying like a baby?

Well, on January 26, 2012 the Commonwealth of Virginia and the U.S. Department of Justice announced a historic settlement agreement that would transform Virginia’s system of care for people with intellectual and developmental disabilities (ID/DD) from one that is reliant on large segregated institutions to one that is focused on integrated, community-based services. The agreement will help thousands of Virginians with ID/DD avoid unnecessary institutionalization.

The settlement agreement is now in the United States District Court, Eastern District of Virginia. Judge John Gibney will decide whether to approve the agreement. While this is great news, unfortunately some people in Virginia are opposed to Judge Gibney signing the agreement.  Can you believe that?  Did you know that the state of Virginia ranks 45th in the Country of how we fiscally manage our children and adults with ID/DD?  Read this article to learn more about this and the horrific findings from the Department of  Justice.  What does that mean for Ethan, you ask?  Read this letter that I sent to Judge Gibney to find out...

Dear Honorable John Gibney,

My son Ethan is 3.5 years old. Ethan was born with multiple birth defects. He is developmentally disabled, Intellectually Disabled and physically Disabled. Ethan can not feed himself, dress himself, he has just started walking with the assistance of a walker and leg braces. Ethan attends a Special Education Pre-school 4 mornings a week through Hanover County Public Schools. He is unable to communicate with other children or adults his needs or wants. He can be very aggressive and violent due to his communication delays.

Ethan also has many medical issues. He was born with bilateral kidney reflux/Grade 5. He endured five surgeries in the first year of his life. He still struggles daily to fend off kidney infections. Due to this condition, he takes an antibiotic daily. Both of Ethan’s kidneys are damaged. We know that one day he may need a transplant. Ethan has asthma, we must give him 3 nebulizer treatments daily just to keep his lungs clear. He is very susceptible to infection and in his 3 short years has been hospitalized three times for RSV and pneumonia. He also must carry an inhaler with him at all times. Remember, earlier that I told you that he is non-verbal so his caregiver must always be diligent to ensure that Ethan does not has breathing issues as this could quickly take his life. He also suffers from reflux and takes a daily medication.

Typical 3.5 year olds are independent at this age. Ethan is not. Ethan can not be cared for in a regular daycare setting or by a typical babysitter. Ethan functions at the age level of a 12-18 month old baby.

We want to take care of our son in our home so that he can thrive and have the best possible life with us and his brother and two sisters. Ethan needs the services provided in the ID Medicaid Waiver. He needs in-home care so that we can work to provide for our family. He may need behavioral therapy as he gets older to help manage his aggression and not have to be institutionalized.

Ethan is currently on the Medicaid Waiver Wait List with thousands of others in Virginia for the ID/DD Waiver. Please consider signing the DOJ settlement agreement. This would mean that our amazing son would have a life that he so deserves.

If you agree that Virginia needs to step up to the plate and Judge Gibney needs to sign this agreement please write him a letter:

The Honorable John Gibney

Spottswood W. Robinson III and Robert R. Merhige, Jr., Federal Courthouse

701 East Broad Street

Richmond, VA 23219

He is accepting letters until April 9, do it for Ethan and the other 6,999 adults and children who just want to be cared for, loved and grow up with their families and not in an institution.

Do it for him...

Monday, January 30, 2012

Monday Monday Monday

Ethan woke up this morning feeling great, had not had a fever since Thursday, he was in a wonderful mood and ready to get on the bus.  I got him on the bus, Jake and Gracie on the bus, dropped Anna Claire off at Preschool, stopped for some Java and walked into the office when my phone rang. It was the clinic, Ethan threw up as soon as he got off the bus.  I hadn't even taken off my coat.

I decided to take him back to the doctor.  Turns out the throwing up was caused from coughing, he had crackling on both sides of his lungs and his asthma was acting up. 

He is on oral steroids, an antibiotic, an inhaler and breathing treatments every 4 hours.

And right now he is doing this....

I have a couple of hours of work to catch up on and than I will be joining him....

Sunday, January 29, 2012

Milestones and Real Life

Ethan has had some major milestones in the last two week.... no more Binky, no high chair and no more toddler bed!

Those milestones help us to remember that Ethan is progressing and making great strides but weekends like this one makes me forget!  He has been sick since Wednesday.  He started with a cough on Monday, a fever Tuesday night and by Wednesday he had a nasty cold that has turned into pneumonia.  Everything makes him mad, nothing soothes him.  He is in a constant state of aggression.  He has scratched, bitten and hit everyone in this house.  It takes two adults to hold him down to give him his breathing treatment.  He is tired, we are tired and the other kids are not getting the attention they need and are starting to act out.

Yep, this is real life, folks, real life stuff!  I suppose I could have just blogged about the first two pictures and how awesome everything is but that would not be the whole truth.  With the joys of raising a special needs kid comes the heartache.  Nothing in a parenting manual prepared me for sure, I feel like a first time parent with Ethan.  Raising 3 other toddlers did not prepare me for this.  I have a ton of guilt that weighs on me like a ton of bricks.  I feel guilty for the frustration that Ethan has, guilty that I can't figure out how to make him comfortable, guilt that my other children are being ignored and guilt that my husband is being neglected. 

Tomorrow is another day and it's Monday so we can start over, right?

Thursday, January 19, 2012

A Tour of the NIH and Childrens Inn

We are back....we came in last night and Ethan has some testing today and hopefully we will be back on the road this evening!  In the meantime, I thought I would give you a tour of this awesome place!

Very cool, huh?!

Saturday, January 14, 2012

National Institute of Health - Day 5

Friday was our last day at the NIH.  We started the day with Ethan attempting to do a swallow test.  We were not successful. Ethan has refused to eat most of the week and think some of it may be due to the fact that he was intubated during his MRI and has a sore throat etc.  From what the doctor was able to see she was SHOCKED that Ethan eats what he does based on his anatomy and tongue placement.  They have requested that we go back next Thursday for more testing.  I feel terrible, we have fought with Ethan for the last 2 years to eat and thought it was a behavior issue, he spits his food, screams, throws his food but it might actually be a physical problem. 

From there we went over to photography - they took pictures of his features that are considered "different" like his ears, feet, hands, face and scrotum. 

After that we had a 3 hour session with a Child Psychologist which was very educational for us!  They assessed him using different play sessions and asked us a ton of questions and we had to fill out some questionnaires.

He did get sick during the session and we had to take a break but he bounced back pretty quick. Afterwards he went and took a nice nap!  He worked very hard.

When he woke up and his Team came in and went over the results of what they have for the week. 

Nutrition - he is 97% for weight and 5% for height.  They want us to discontinue the pedisure for supplementing until his weight catches up with his height.  We will also be adjusting his diet due to his Pre Diabetic Status.

Neurology - MRI - structurally normal brain

Cardiovascular - EKG and Echocardigram were both normal

Hematologic - anemic due to low iron levels - we have started 2 x a day iron supplements

Endocrinology - HBA1C - elevated tests results but not yet considered diabetic.  Is considered pre-diabetic and will need to adjust diet and have follow up with an endocrinologist at Childrens in Richmond.  He is also being tested for MODY which is the genetic type of diabetes since both Chris and his Mom are diabetic.

Dental  - fused lower incisor teeth (this is a symptom of the main syndrome that he is being tested for)

Dermatology - doughy and redundant skin (he has had this since birth)

Ophthalmology - under anesthesia showed normal retina with a mild clouding of the cornea.

Bone Age - 2 years old.

Psychiatric - not Autistic but does have a Sensory Disorder.  We are going back next Thursday for further testing and being referred to a Pediatric Psychologist at Childrens in Richmond.

Rehab - hypermobility in the tendons, gave us some suggestions to share with his pt and are also  making him a custom swim vest so he can be independent in the pool.

It will take anywhere from 6-12 months before we have all of the tests back including the Genome study which will tell us positively if he has some of the syndromes that they think he may have.  The other kids have to go to the Pediatrician on Monday to have blood work done that will be sent to the NIH so that they can be mapped in the DNA testing.

We got home last night and he was so excited to see his Big Brother and Sisters!

There is no place like home!

Thursday, January 12, 2012

National Institute of Health - Day 4

Another busy day but fun and we again we learned so much!

We started the day with a 3 hour diabetes test.

He did great drinking the sweet stuff!

They took his blood 4 times during the 3 hour period.

During his testing we had other visits and his nurses just came and found us to take blood.  It was great, he wasn't confined to his bed all that time!

He had an abdominal ultrasound.  Followed by a visit by the nutritionist to talk to us about his diet and changes we need to make to help keep his blood sugar in check.

Next up we had a visit of about 30 different doctors from all over the World stop by to get a look at Ethan.  Ethan had a ball.  He loved all of the attention!  In fact the Director of the Undiagnosed Disease Program picked him up and showed him off - he was in heaven!

After that we travelled over to the Eye Clinic so that the Eye Team could take a look at his eyes.  They already looked at the back of his eyes during his sedation but wanted to see how he tracked items.  While we waited for our turn, Ethan had fun playing in the kids waiting room.  This place is awesome for kids - everywhere you turn they have something to keep them entertained.

When we got back to our room we had a visit from Neurology.  They asked a lot of great questions and gave us some insight on Ethan's behavior issues.  Turns out some of his issues we are dealing with are due to a Sensory Disorder.  Makes perfect sense.  A lot of things that I have been stressed about are part of his make-up...things like the constant chewing on everything, slapping his ears, covering his eyes, freaking out in stores or at Romp n Roll when more kids show up than normal.  Tomorrow we meet with a behavioral specialist so I can't wait to learn more about ways to help him!

When we were done with that, Ethan was able to get his IV out.  I love how the nurse just got right down to his level while he was playing - he was totally not freaked out at all!

Today we finished up around 2 and we were able to come back to the Inn and take a nice long nap!  Much needed!!!

We ventured out to Whole Foods to have some dinner and Ethan had a complete meltdown, I think the really loud noises and bright lights were just too much for him after all the stimulation today.  We got our food to go and came back to the Children's Inn. 

Ethan checked his mail and got some pretty cool goodies!

We ended the night hanging out with Vi the Therapy Dog who lives here at the Children's Inn.

Playing in the elevator - which he is obsessed with by the way!

And taking a ride on a pretty cool ATV in the playroom!