genetics

Genetics

Ivan's craniofacial surgeon suggested genetics take a close look at Ivan's chromosomes.  Dr. Singhal said that if they could pinpoint a specific syndrome, then it would make it easier to map out Ivan's future surgeries.  At three years old, Dr. Ardinger said all his blood work came back normal.  

The genetics clinic called us last spring saying they had a new test (microarray) that would give them more specific information.  The genetics counselor called with the results that everything continues to look normal and there were no surprises.  Great news that he doesn't have a genetic syndrome.  But, also very frustrating for lots of reasons, we still don't know why his sutures closed after surgery.  

Ivan continues to be our little mystery man!

Glasses

Ivan has continued to do a great job wearing his glasses...most of the time!  He does like to use them as a weapon when he gets mad.  We have made multiple trips to see Miss Liz and Miss Debbie for adjustments.  We have only lost them a few times.  The most recent was on Alex's practice football field.  After practice the sprinklers came on and the boys were having a ball.  Ivan loves to set things close to the sprinkler head and watch the water pressure make them "fly".  The closest thing he could find were his glasses.  So the glasses went "flying".  We found them after about ten minutes with the help of coaches, dads and kids!

Since getting his glasses, he has only told me once that his eye is "wiggly". 

First Grade

Hopefully, Stilwell Elementary is ready him.  The staff has been very proactive and welcoming.  On Friday we took Ivan to the school to meet the principal and take pictures.  We made the pictures into a story book, I've caught him reading it multiple times.  His teacher called and wants to spend some time with him Wednesday, and they are having a popsicle party for new students.  One of his favorite friends from his summer social group will be in the ED class with him.  School starts on the 17th for both boys.

Endocrine

Watching movies to pass the time.

Ivan had his 3 year check-up with the endocrinologist on Wednesday.

In the past 4 months he has grown 1 inch and gained 3 pounds!

That puts his percentiles at 14%tile for height and 29%tile for weight.

This is how he spent his morning:

1.  weighed and measured

2.  blood pressure

3.  blood draw

4. drink the glucose juice that he despises!

5.  while waiting 2 hours for the next blood draw...

*walked around the hospital

*watched movies

*finished his physical

*radiology for bone age xrays

6.  2nd blood draw for endocrine and another for genetics

Because Ivan has to be fasting the whole morning, we celebrated his bravery by (drum roll please...) going to Red Robin!  I know that surprises all of you!

Proud, proud, proud of our sweet bear.  He is starting to realize the pain and anxiety of the hospital won't last forever.  He kept telling us how brave he was and that he didn't even cry when they poked him!

Ivan has one more year of the study.  Keep growing big Ivan. 

1 year scans

Ivan's scans looked great.  

He still has some screws that haven't dissolved and a couple areas near his temples were the bone hasn't regrown.  He is also showing some pressure on both sides of his head, but nothing he can't live with for now. 

He won't be going back to see Dr. Singhal for two years!!!

Ivan was a rock star. 

His little body was shaking the whole way to the hospital.

He asked his usual thousand questions and we practiced telling the donut, "You don't scare me."

He introduced himself to everyone in the radiology waiting room, he also asked them if they were having an MRI (tube), CT scan (donut) or a spinal tap.

When we got to the donut room he took a minute or two in the hallway to compose himself then walked to the doorway and said, "Well, hello donut!" 

Ivan wanted Chris to go for a ride on the bed.  Then he decided it was his turn.  He jumped on the bed, held still and it only took about 10 minutes.  So amazingly proud of our brave little guy.  He didn't let his anxiety get the best of him.  

Next stop was Dr. Singhal's office.  He told the nurses and Dr. Singhal, "I didn't let that CT scan scare me".

specs

Just like Alex

We are hoping it will motivate him to keep them on rather than use them as a weapon!

The glasses are specifically for ptosis (droopy eye), strabismus (lazy eye) and they have a small amount of correction for far-sightedness.  We are hoping to correct and strengthen the eye muscles as much as possible to avoid more surgeries.  His ptosis is getting bad enough that he may need an eye lift.  He is having trouble seeing out of his left eye.  He covers his left eye with one hand and says, "it helps me see better".  He'll also tell me his eye is "wiggling", which in Ivan speak means he is seeing double. 

We are trying to stay a few steps ahead of him.  I think we are in need of duct tape and super glue!

Ivan has multiple doctor appointments over the next few weeks.

He has scans with the craniofacial surgeon on Wednesday, a yearly check-up with our pediatrician, an appointment with his favorite psychologist, a dentist appointment, an endocrine appointment that includes x-rays, fasting, drinking sugar water that he despises and blood work for endocrine and genetics.  

Please say a prayer for his anxiety.  

I'll post an update on his scans as soon as we know something.

Also, Ivan is moving to Stilwell Elementary.  He will be in a class with 4-5 other ED (emotionally disturbed) kids.  The principal spent 1 1/2 hours with us, gave us a tour of the building and introduced us to the staff.  She has lots of enthusiasm and great ideas for integrating the ED kids into the typical classrooms.  

We are praying for a successful year.