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

Happy Dancing

Ivan did the happy dance when he heard that Miss Cassie (speech) and Miss Sarah (occupational therapy) were coming to visit.  They are two of the biggest reasons that Ivan loves school.  We couldn't wait for them to hear Ivan's new, improved speech. And... they brought 20 beautiful balloons.

We are truly blessed by all the people that have said prayers, brought meals, come to visit, sent cards, made posters, read the blog, brought surprises and kept him in your thoughts.  It is overwhelming and comforting to have you all carrying us through.   I told Chris that next time I will take pictures of Ivan with all of his visitors so he can remember you all.  Hopefully, there won't be a next time!

kindergarten friends

Thank you Mrs. Chaffee's kindergarten class.

Ivan loves his poster.

A Very Good Day

It has been a wonderful day.
*The fluid that was sent to the lab was serous fluid and didn't contain any bacteria.
*Some of the fluid is already reabsorbing into his body.
*Ivan has been released to go to school on September 7.
*No more bacitracin on the stitches.
*Stitches should start falling out in 2 or 3 weeks.
*No pokes!
*We saw the toy train at the snack bar at Children's Mercy.  It was back on its tracks and moving along.
*We ate lunch at Red Robin. 
*He ate a ton of mac and cheese and gulped down two glasses of orange juice.
* Ivan did the happy dance several times today.
*He is beginning to answer questions in complete, appropriate sentences.
*He stood next to a dog for 10 minutes and didn't grab her tail once!
*Ivan hasn't stuttered since surgery.
*His vocabulary is expanding... words and phrases we've never heard him say.
*Next follow-up with the surgeon is 3 months away!
*And...

Celebrating my beautiful sister.

One year brain tumor survivor.

Love you Susie

He's my brudda from another mudda

After someone finds out our boys were adopted their first question is, "Are they biological?".  Nope.  Sometimes the next question is, "Do they act like brothers?".  YES!  They fight, they argue, they get jealous of each other.  But these two seem to have a special bond, attachment, friendship whatever it is; they never take each other for granted.

There are no coincidences.

Alex has an easy smile that was named the "Hollywood" smile by our host in Russia.

Ivan was quiet, reserved and had blank stares when we met him.  Alex has brought out Ivan's endearing personality.  Alex has a need to watch over and protect his brother at all costs.  Alex takes his hand, he helps him to the bathroom in the middle of the night, he lets him sleep with him.  He watches out for him at school and gives his teachers updates on how his little brother is doing.  Alex never gets jealous when it seems like everyone he sees asks how Ivan is recovering, instead he brags about him and gives lots of details.  Alex is the worrier, he has cried  many tears for his brother, he has said countless prayers for him.  When Ivan got stitches in his ear from running into Alex's 7 iron, he was so distraught, he cried harder and longer than Ivan.  Alex is an old soul and seems to understand more than any 9 year old should.

After the 1st surgery when Alex first saw Ivan's new head.  He was upset because, "I don't look like my brother anymore.".  He wanted a scar just like his brother's.  We drew one with a Sharpie.  When it wore off, Alex made us redraw it. 

We have watched Alex punch a kid several times because he was bullying Ivan.  At the time, Alex was only 4 years old and Ivan had only been home 6 weeks.  Their bond happened quickly.
Once, Alex asked me if I thought that someday Ivan would have a family and live on his own.  Before I could respond, he said, if he can't;  he can live with me. 

Everyday, several times a day whether we are at the dinner table, the car or just hanging out, we'll hear Ivan say, "Love you Al".  He doesn't expect a response, he just needs to let him know.

These two brothers are puzzle pieces that are a perfect fit.  They were meant for each other.

There are no coincidences.

And I am one lucky mom.

Ouch

During the appointment today the nurses tried to drain the fluid that is collecting.  They were only able to get a teaspoon or two out, so they tried with a smaller needle (the first needle was about 5 inches long).  The second, slightly smaller needle didn't make a difference, the fluid wasn't budging.  For now, we are assuming it is many small pockets of seroma;  it has been sent to the lab partly because Ivan has been running a low-grade fever since surgery and partly because they need to be positive that it is serous fluid and it isn't infected.  The good news is that it wasn't spinal fluid.  We should know more tomorrow or Wednesday when we go see Dr. Singhal for his post surgery appointment.  Poor guy, the numbing cream (magic lotion) didn't seem to make a difference in the pain, the last thing he said to me before I kissed him goodnight was, "I didn't like those pokes." 

While we waited on the numbing cream to work its magic, we had an interesting chat with the nurses.  When doctors first started performing craniosynostosis surgeries in the 1960's, there were only a handful of surgeons in the country willing to take the risk.  Once a year, a surgeon would come to our area and examine about one hundred patients then pick a few for surgery.  After surgery, the kids would stay in the hospital for a month or more.  Quite different than the 3 days Ivan spent last week. 

They also talked about the growing concern for the lack of young surgeons specializing in plastics, and especially CS.  Not every major metropolitan area has a doctor specializing in CS.  We are so grateful to have one of the very best so close to us.  This is just one of the reasons the publicity and research is so vital to the kids. 

One Week

One Week

We are heading back for an unexpected visit with Ivan's surgeon.  He has fluid building up on his forehead and his temples.  We are hoping it is seroma fluid that can be taken care of with a drain.  The fluid doesn't seem to be bothering him, he just rubs his eyes a lot. We have been monitoring his temperature and head circumference.  We will add an updated post this afternoon. 

Ivan finally got to take a bath on Saturday night.  He can soak in the tub, but can't get his head wet.  Even though the water turned cold and was only an inch deep, he had a blast. 

Stronger, Faster, Awesomer.

Day #6

Today  Ivan starting acting more like himself.  It has been his first full day without pain meds.  We've been hanging around the house reading books and playing on the computer.  His balloons are with him wherever he goes.  He'll tell us that he is going to his room to have some "quiet time".  We aren't sure if he is really sleeping or just needs some time to relax with his eyes closed. This morning we did go to Alex's football practice for a few minutes, Ivan had fun swinging and watching friends play.   His appetite isn't back, although he will eat ice cream!  We figure it must hurt to chew. 

Seems like he is healing faster this time.  We have noticed the stuttering that he struggled with since January is gone!  Once again, we are beyond thankful for all the blessings that surround our family. 

Handsome Ivan

Day #5

In the top picture Ivan is checking himself out in a mirror.  He thinks he looks pretty good. He is much happier today because his eyes are starting to open a bit.  He doesn't like to have his tourban changed (twice a day), but he loves to rub on the back of his head when it is off.  We all walked Alex to the bus stop again this morning.  He didn't say anything about wanting to go to school.  We figure  the day that he complains that he isn't on the bus, we'll know he is feeling better. 

Home

Ahhh....sleeping the day away.

Quiet day, it is hard to do much when your eyes are swollen shut. 

Holy Macaroni!

We are heading home early.  What a blessing.

  Hanging out waiting on the PT to fit Ivan's new helmet, he has one last IV that needs removed, then to the pharmacy.  Took a quick picture before Ivan got his new tourban.

Absolutely amazing. 

Surprise Visitors

Ivan went to the playroom today, watched Nemo and ate and drank a little more than yesterday.  Looks like the tourban and drain will come off this afternoon along with another IV.  We may even get to come home this afternoon...2 days early!  His eyes are almost completely closed from the swelling.  This happened around the 3rd and 4th day last time.  We are enjoying some rare snuggle time!

Chillaxing

Monday

Tuesday

 Tuesday

Tuesday

Looking better already.  Ivan's vitals and labs are improving so he didn't need another unit of plasma.  He was moved from the PICU into a regular room this afternoon.  He watched Nemo and ate a few bites of mashed potatoes, mac and cheese and ice cream.  Dr. Singhal said there was more pressure than what all the tests and scans had been showing.  His brain was happy to be free!  Amazingly, he is only taking an ibuprofen drug for pain.  His arterial line came out today.  Ivan can't wait to be rid of the itchy tourban, the other IV's and the drain.  Enjoy the pictures!  Our rock star has turned into Rocky!

New and improved!

Beautiful new round head #2! 
We finally got to see Ivan around 3:30.  We met him on Reunion Avenue, then went to the PICU.  He is resting and the anesthesia side effects are finally starting to wear off.  Got a sweet smile from him when we rubbed noses and he asked me to "do it again."  We have pictures to share, but the laptop is having issues, so we are hoping to post them tomorrow with an update. 

12:20 Update

Just heard from the operating room and Dr. Singhal has started closing and said that everything went well.

Surgical update

Just heard from the operating room and they started around 8:40 and said things are going well. We hope to hear more around 10:30.

Balb

Yes, I know bald is spelled wrong, but this is Ivan's version of the word.

He Knows!

We spent yesterday at the hospital completing all of Ivan's pre-surgery appointments.  We saw the surgeon, a nutritionist, the lab, the anesthesiologist, and a child life specialist.  Ivan has been taking anti-anxiety meds for over a month now and yesterday we could see the positive effects.  He was bouncing off the walls and jumping off the exam tables but he wasn't as tense as usual. 
The child life specialist talked to him about his surgery.  He took it pretty well and is most concerned about the mask with the bubblegum flavor (he hasn't stopped talking about the "icky" bubblegum smell since his spinal tap).  He smelled the lemon/orange flavor and decided that would be better.  He asked if Chris and I would stay with him.  Once we answered, he flapped and squeaked, "I'm going to have a sleep over at the hospital!" 
We printed the book about surgery that Children's Mercy has on their website.  It is a picture book that explains what will happen the day of surgery.  He has been carrying it around all day and showing it to all his toys!
The boys are shaving their heads on Friday (I'll post pictures).  On Sunday we go back in for more lab work.

Publicity

An article for the Jorge Posada Foundation was published in today's Parade magazine.

http://www.parade.com/news/what-america-cares-about/featured/100808-his-most-important-save.html

Moving Ahead

Ivan's surgery has been moved ahead to August 16th.  We are so thankful. 
We are hoping he will be able to start his kindergarten year after Labor Day.  The official start of school is August 18th.  He won't be happy when he finds out he will miss the first day! 

Ivan had another full evaluation with the Children's Mercy occupational therapy yesterday.  He was in full-stim mode, and showed off all his tricks.  Rocking, flapping, smelling, licking, squeaking, yelling and perseverating plus he couldn't focus on the tasks.  We were all exhausted.  The good news is that he showed his true side to the OT so she will be able to get an accurate evaluation!

The next few weeks bring lots of doctor visits and lots of hand sanitizer. 

EKG update

Great News!
Ivan's EKG results were normal.  Now we are working to find out why he had the arrhythmia during the sleep study.

EKG

Ivan is having an EKG done in the morning. During his sleep study they found a heart arrhythmia. Ivan's plastic surgeon thinks this is a separate issue from the pressure on his brain. We'll update after we hear from the cardiologist.