My friend, Daddy

The last few days we have seen a slow return of our Ivan.  He is starting to get the bounce back in his step and the ornery back in his eyes. 

Full day school was overwhelming for him.  We  also believe his medications were magnifying his anxiety and impulsiveness.  It was a rough three weeks.   He wasn't eating and became hostile and angry.  It will be a constant trial and error to figure out which medications will work for him. 

This last week we adjusted his school schedule; he is coming home at 1:00 now.  Hopefully this will be temporary and he can adjust back to full day soon.  

On Friday Chris went to school to eat lunch with the boys.  Ivan introduced him to all his paras and teachers, "This is my friend, Daddy". 

Thanks for your prayers.

Thanks for believing in him.

Oh yes... his stitches are finally falling out!

One Month

The first picture was taken August 13, the second was September 16.  The difference is incredible, his forehead is so much wider and flatter and he has brow bones now.



We are all so glad to be on the other side of surgery, again!

He continues to make new speech connections and his vocabulary is increasing daily.  This morning he told us his yogurt was "slimy".  We are having actual conversations. 

Today he is finishing his second week of school. Kindergarten is wiping him out.  He has a great team of people at school working with him. We are crossing our fingers his transition time won't be too long.

Craniofacial Month

saying prayers for all our CS kids

Kindergarten, Here I Come!

oh my

Today Ivan started kindergarten.  There have been times we weren't sure if this day would come.  He rode the bus to school with Alex and I followed in my car.  The psychologist had requested a meeting at the start of the day.  The staff wanted to know the details about how they can help with his recovery.   I called the surgeon and requested an activity release form to give to the school.  The form says, "no running, jumping, climbing, roller blading or bicycling for 3 months". 

It is going to be a long three months!

For now, the plan is to have an adult with him during the day.  He will also get to go see the nurse a time or two each day to take his helmet off for a few minutes (it gets very hot and itchy).  During PE time, Ivan will go to the computer lab or possibly the OT room to swing.  The district also has an adaptive PE teacher.  They have already called her to set up a schedule for Ivan.  Adaptive PE will allow him much needed movement activities in a safe and controlled environment. 

We are so thankful he is already familiar with his school.  So thankful the staff knows Ivan.  So thankful they want to be proactive in helping him recover. 

3 Weeks

The first picture was taken 2 weeks post surgery and the second picture was taken today, 3 weeks post surgery.  In just a week the swelling has gone down enough that we can see a few of the new plates, screws, ridges and bone in his forehead. 

Ivan had a big week.

Aunt Susie came to visit. 

 When Ivan wasn't giving her coy sideways glances, he was telling her that he loved her.  He couldn't get enough!

Ivan went to his first cardiology visit.

Another EKG.

Seems that he does have a harmless sinus arrhythmia.

But, they are concerned about his blood pressure. 

It has always been very high, the assumption has been his anxiety issues.

It could also be related to his intercranial pressure.

So, we left with instructions to call his synostosis surgeon tomorrow and

try to get three "calm" blood pressure readings.

The cardiologist thinks it may be related to his kidneys.

So, we are being referred to a nephrologist.

We almost canceled the cardiology appointment. We figured there wasn't a concern with his heart and that he'd been through enough lately.  We are so glad we went.  Except, Ivan had a rough time.  It was a horrible reminder of how many things he has had to endure.  His anxiety was through the roof.  Once we finally were able to get the EKG stickers on his chest and Ivan calm enough for the machine to register, his pulse was up to 206 and his pressure over 170.  

Ivan and I ate visited his classroom and went to lunch last Wednesday.

Kindergarten starts tomorrow.

Ivan is "so excited" and a little nervous too.

I will post pictures tomorrow.

Thanks for your prayers, Wendy