So we went to a party today!

http://www.childrensdmc.org/openingcelebration

Jonathon enjoyed it for the most part, except for the fact that Radio Disney was on the premises and they were very loud.  I was very happy that I brought his school back pack, because his headphones were in there for him.

The new hospital is very very nice.  Therapy rooms are huge, lots of lighting and the colors were wonderful.  The children that will go there will be very happy.

Jonathon will not be going to this hospital for p.t, ot. or speech.  He gets his services right at our school.  We went for moral support.  The hospital that we visit on a regular basis is across the road.

Last year we went to a party and met Jake and Ellie.  A lady came up to us today and said that she remembered us from last year and thanked us for coming out again.  She also remembered that we don't live close.  That was very nice to be remembered.  Her saying that made all of us pretty happy.

Inside the hospital we went on a tour.  This tour did not go well at all, and I am still not sure why.  Jonathon freaked out and did not want to go into the first therapy room that we tried to visit.  I don't know what scared him.  I think he thought he was going to have to stay.  I tried to keep telling him that it was ok and we were just visiting, but my husband ending up picking him up and carrying him for safety.  When we visited the second part of the therapy room he did a little better, but when we went back out into the hall he once again froze.  He was really scared.

Jonathon had a dental procedure done less than a month ago at his hospital across the street, but this is a brand new hospital.  Brand new opening.  Why did he not like this hospital.....

We may never know.

So we went back outside.  He got a spider painted on his hand.  Amazing!  Last year he would not let anyone paint him.  Another milestone for Jonathon.  I was very very proud of him for letting the lady paint on his hand.  He received a free bicycle helmet, and a basketball player signed it.  Embarrassing, but I don't follow basketball and I'm not really sure who he was. (Sorry).  But it was still nice.  We did a contest with Radio Disney and some other children and parents.  We lost, but Jonathon received a prize.  He got alot of Jake and the Never Land Pirates gifts.

Overall a fun hour out of our day!

Getting some prizes

New ambulance, but Jonathon wouldn't go inside.

Checking out the therapy room

Getting hand painted

hand painted

playing a game

spider painted on

at home trying on his new helmet

Research Time

So now I have got to do some research.  The teachers are finally going to use p e c cards.  I started using those over 2 years ago and just took them down.

I think/thought we were done with those.

I think I can get an app for the Ipad to help Jonathon instead of investing in more p e c cards.

Research research research.........

Last Day of School

I am not sure what happen to my previous post about last day of school.

So I redid it.

Last day of school was Wednesday June 9, 2010.  We had a nice time and a great way to end the year.  

Jonathon received a few items also.

Pictures with teacher ~ 3 at end are teacher, teachers aide and social worker ~ last picture is gift from Miss Lori(social worker)

C E L E B R A T E ! ! C O M E O N ! !

It is officially HAPPY HEART DAY # 2 !!!

Some pictures are graphic ~ please be aware ~

Jonathon's Hospital

Getting my last hug before surgery

Right after surgery

Waiting to take some stitches out and then homebound!

One year later - Our First Happy Heart Day Celebration!

Getting ready for his party!

2 years later - Our Second Happy Heart Day Celebration!

Checking out his Happy Heart Day Balloon

Atrial Septal Defect (ASD) - a hole in the septum between the upper left and upper right heart chambers. This causes mixing of the red and blue blood, thus overworking the right side of the heart. The three types of ASD's are Sinus Venosus, Ostium Primum and Ostium Secundum. Sometimes the ASD can be closed during a cardiac catheterization or surgery may be required. 

Ventricular Septal Defect (VSD) - a hole in the septum of the lower left and lower right heart chambers. This allows blue blood to mix with red blood, causing the heart to be overworked and possibly enlarged. A small hole may not need to be closed, a medium-sized hole may be closed during a cardiac catheterization and a larger hole may require surgery.

Bicuspid Aortic Valve (BAV) - a defect of the aortic valve that results in the formation of two leaflets or cusps instead of the normal three. Normally only the mitral valve (bicuspid valve) has two cusps (instead of three). The aortic valve is situated between the left atrium and left ventricle. About 1-2% of the population have bicuspid aortic valves, although the condition is nearly twice as common in males. It is more common than any other congenital cardiac anomaly. In many cases, the condition will cause no problems. However, especially later in life, a bicuspid aortic valve may become calcified, which may lead to varying degrees of severity of aortic stenosis and aortic regurgitation, which will manifest as murmurs. If these become severe enough, they may require heart surgery. 

http://chdbabies.blogspot.com/2009/08/chds.html

 Jonathon had surgery February 5, 2008 for ASD/VSD repair.   He sees his Cardiologist once a year in August.  If everything looks good this year we may be moved up to seeing his Cardiologist once every 2 years!

His BAV is being monitored and always will.  We have no worries or concerns at this time.

To celebrate Jonathon's 2nd anniversary of HAPPY HEART DAY we are having a small party once again!  Tonight Grandpa and Grandma Panczyk, Mr. Randy, and big brothers and mommy and daddy are having a lasagna, garlic bread and salad dinner with special homemade punch to drink.  Afterwards we will celebrate with a Happy Heart Cake and Neapolitan Icecream(Jonathon's favorite) and lots of balloons!!

I am thoroughly amazed how far technology has come in life and I am very happy with the team of doctors and nurses that we have for Jonathon.  Thank you for choosing the medical field as your career and for saving so many lives. 


I love you Jonathon!  I am so proud of you!  Enjoy your special day!


Please check out the website listed below and help spread awareness ~ Thank you

http://tchin.org/aware

It is Happy Heart Day!

It is finally here, Happy Heart Day! This is Jonathon's very first anniversary from OHS. Last year at this time, I was pacing the floors and praying that our baby would make it through open heart surgery. We were very fortunate and had my sister and her husband with us for support. I don't know what we would have done without them by our sides.(Thank you again sis-love you!) I sit here and think about all that we have went through up to Feb 5, 2008 and what differences have occurred since Feb 5, 2008. A world of difference. Before surgery Jonathon was very cold all the time, got tired quickly, and I literally bottle fed him every 3 hours to keep the weight on him and to get him heavy enough for surgery. I never slept, but I did what I had to do to protect my son and to help him. I am so glad that I chose that route. Now he is a good color, hot ALL the time, never never tired, is crawling all over the place, walking with help and around the furniture, signing words to me, talking a little, is able to drink from a reg. sippy cup and straw sippy cup, feeds himself with help from me, finger food feeding is coming along much better, even tries to drink from a regular cup! He loves to play, is able to stack blocks, put balls in holes and pound them in, just got a wooden work bench that you have to pound shapes through(he can do it), pushes his trucks, cars all over my house, including 2 at a time, loves to read his story books to himself and loves to hear us read to him, loves music. He is sooooo happy and content and I am very proud of him! I am so so happy and relieved that surgery was a SUCCESS for us! We only visit the cardiologist once a year.
We are having a little party for Jonathon this evening-grandma and grandpa, friend Randy and all of us. Dinner and cake and ice-cream. It's going to be a great day.
HAPPY HEART DAY MY ANGEL!!!!!!!!Love Mommy