Right to the Point

On a business call this afternoon ~ person on the other end asked me how many children I had ~ I said 3.  15, 13, and 3 ~ my 3yr. old has Down Syndrome............

Person on the other end says "Oh I am so sorry"

I then replied "Don't be....I'm not....my son is healthy...he has been potty trained since he was 1 1/2 yrs old.....he is in preschool 4 days a week....he is doing awesome!"  Person then replied "oh that's good"

I come across people all the time that use the word retard, sometimes I am not a good advocate for my son and I say nothing......Sometimes I try to explain and they in return say oh we don't mean him, there isn't anything wrong with him.....but I don't think they really understand what they are doing wrong.  I have told these people that I actually come in contact with alot that this year they will learn all about it!!!  Stop the R word

I can't believe how many people in this world do not have a clue about Down Syndrome!  Why do people think it's a death sentence?  The only concern I had when the inconsiderate Dr. told me that my son had Down Syndrome was OMG is he going to die!!!!  NOT oh great what did we do!!!!!  I love my son and have loved him from the moment I laid my eyes upon him, just like I love my older boys!  AND they all get treated equally.

We are involved in our county ~ We go to our monthly support meetings(well as often as we are able) ~ we participate in the St. Clair County Down Syndrome Support Group Buddy Walk(2 yrs now) and won Grand Marshall both years.  This year we raised $3,341.00 and we are very proud!  But more information needs to get out there.

I don't want to hear I AM SORRY because my son has Down Syndrome!

I am HAPPY!  Jonathon would not be Jonathon without his extra chromosome ~ I would not change 1 single thing about him!  

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

St. Clair County Down Syndrome Support Group Buddy Walk 09

was on Saturday October 17, 2009.  We had a wonderful time considering that it was very chilly outside.  We walked with temperatures in the low 40's.
We had a ton of support this year for our very first walk.  We had about 19 people walk with us and our team "Team Fishy Cracker" raised about $905.00 and we won "Grand Marshall" for the day ~ which means we got to lead the walk and we will be pictured on next years brochure and we were in in the local paper. http://www.thetimesherald.com/apps/pbcs.dll/article?AID=2009910170334
We did let Jonathon walk for a little bit, but this is not the picture the paper used.  I did email the The Times Herald and let them know how disappointed we were that Jonathon is not in the picture. I was very upset and cried when we bought the paper yesterday.  I really feel that the whole day was for awareness and the paper messed up when they didn't even picture the child in our family that actually has Down Syndrome.
but onto better things.  After the walk they had a raffle.  The raffle consisted of A razor bike, gift cards, Christmas ornament(Down Syndrome Society Buddy Walk 2009)(this was my donation), gift cards, a necklace and mp3 players.  Well I gave family members my tickets because Jonathon had to use restroom and we got a phone call before we were finished that JONATHON won the bike.  How awesome.  I couldn't believe it.  But after  we got it home and were able to look at it and discuss it, we will be taking it back to get something Jonathon can use.  The bike is for 5yrs and up and is for the city.  We live in the country on a dirt road on 6 acres.  It would never get used.  So we will get something in its place.  Also there was hot dogs, chips and pop for a small purchase.  Over all a great day considering it was so cold out and we thoroughly enjoyed ourselves and cannot wait for next year.  We are already planning!  We have to beat our goal of $905.00 and win Grand Marshall again.  Thank you to all our family and friends for donating, getting donations and walking with us for Jonathon.  We love you very much!  Awesome Job!!

Aug 16th 1991 ~ Aug 16th 2009

Eighteen years......Wow.... For some odd reason I cannot believe it's been that long already. Doesn't feel like it... I still remember the day we got married like it was yesterday. I love my husband very much even though most days I would like to hit him upside the head with a baseball bat! (Polish Polish Polish)

This is how we spent our day celebrating our anniversary and I wouldn't have wanted it any other way!

We took the boys to the 2009 Annual Down Syndrome Support Group Picnic.

We met alot of wonderful people through out the day. Cathy with her 7yr. old daughter Molly.(Molly was so pretty). Taylanda and her husband(sorry I forgot his name) and their 8yr. old son Shane. He was so funny, really outgoing and great to watch in the pool. Cheri(who threw the party) and her 11 yr. old son Jacob. Jacob was very quiet, but also was great to watch in the pool. Shane and Jacob and Molly really love the water. I got to see my friend Jamie with her 2 1/2 yr. old son Bryson. We met Jamie and Bryson last summer and I love when we get the chance to see them and say hello. And a little girl who is 9. Her name is Gracie and her mom adopted her from Equador.(How awesome is that) I think pretty awesome! I didn't get her moms name though. Hopefully next time.

We were able to sit and talk about our upcoming Buddy Walk in October~which I am very excited about. This will be our first walk. We were able to hear stories about school; the dentist;when parents were first told of their child having DS. All in all it was a perfect day for a picnic, perfect day to meet some new friends and a perfect way to spend our Anniversary! Life is good.

Conference

Well I can honestly say now that I have been to a conference based on inclusion. Gilbert and I were able to attend while my great sis watched all 3 boys. Thanks again sis!!!!

I loved it. We first listened to Sara, a self advocate who is building herself an inclusive life as an adult. She was wonderful to listen too. We didn't catch her age, but she graduated with a diploma in 1994. She is originally from Grand Rapids Michigan and now is living in Benzonia Michigan. She lives alone, and she purchased her home. She has a job and lots of friends and supporters. She works 30 hours per week, she told us how she didn't like math and was not very good at it, but now she is doing better and can balance her checkbook. She has a pet cat that lives with her and said "NO she does not want a roomate."

The second speaker I just adored. Her name was Cynthia and she is from Oakland Michigan. Her son Jordan graduated in 2008 from Rochester High with a diploma and is now in Oakland Comm. College. And we got to hear from her pretty much her short version life with Jordan and the school system. I learned alot from her. Two of my new words are:Acquisition of Knowledge, and Modification. I love these 2 sayings and will definitely put them to good use.

I am very glad that Gilbert and I had the opportunity to go and I will definitely make sure that I go to more in the future.