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. 

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