Here We Go Again -- 2012

We are on our way back to Children's Mercy today.  Ivan will have an MRI/MRV and have a cranial pressure monitor inserted into his skull.  We'll be at Mercy for several days.  
He has been having severe headaches and  cognitive, speech and  and behavior have been on a rapid decline since late September.  The spinal tap from early November showed Ivan's cranial pressure higher than ever before.  The CT scan showed that his synostosis surgeries are continuing to do their job.  He has been on meds for migraines and meds for decreasing the pressure.  Neither worked and only made him feel worse.  
If the monitor shows increased pressure, Ivan will most likely have a cranial shunt that will relieve the pressure.  We still have lots of questions, and hope to get good answers in the next few days.  Even the neurosurgeon said he isn't sure why Ivan continues to have increased pressure.  Before, the cranial pressure was due to his skull being too small (craniosynostosis). 

The Good News:
Ivan has participated in the Miracle League Baseball, Challenger Football and he even got to fly a plane with ChallengeAir.  He continues to thrive at Stilwell Elementary.  Thanks to his amazing teachers, paras, principal and friends.  Ivan spends most of his day in his typical 2nd grade class. We are beyond blessed, it is the perfect school for him. 

We'll keep updating the blog.  
On the top right corner, there is a link to Ivan's first synostosis surgery if you are curious.

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. 

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!