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. 

Wahoo!

No helmet and No restrictions!

We saw Dr. Singhal for Ivan's 3 month post surgery appointment. 

We are done with the helmet and will have a follow-up CT scan in 9 months.

He still has a few stitches that need to fall out and his head is very lumpy, but solid. 

4 1/2 pounds and 3/4 of an inch

We went to endocrine Tuesday for the 9th of his growth hormone check-ups.

In the past 4 months he has gained a ton of weight and is continuing to grow.  He is staying at 10th percentile for height and a whopping 25th percentile for weight!  Two years ago the poor kid wasn't even on the growth chart. 

OT and Psychology

Ivan also had appts with his therapist and his psychologist on Tuesday.  They are both great at giving us ideas of how to give him more success socially and with his independent skills.  They are also wonderful about keeping in touch with Ivan's school. 

We are still keeping a very close eye on his blood pressure, his ptosis (droopy eye) and we are watching him for clumsiness and central sleep apnea.  The last two are related to the back of his skull not growing at all. 

Ivan starts his first full day of kindergarten tomorrow. 

 His vocabulary continues to increase and he is making connections and beginning to reason through problems. 

I'll post some new pics later this week. 

We are hoping to give him his first hair cut in 3 months.  It is shaggy and curly.  He also has a bald spot toward the front where he pushes and rubs his helmet on his scar when it itches!

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.