All Paintings Sold and More Ordered

What an exciting thing!  Thank you Noah'sneverendingrainbow.org for letting people know about our project with Simon!

All four remaining paintings sold, including "Bob" which was one of our favorites and all proceeds will go to this months hospital payment.

I'm going to have to start coming up with some neat ideas and hope my little "paintbrush" stays in the mood to paint.

Newest Paintings

I haven't kept up on the blog very well but thought I would show some painting Simon and I did for Noah's Never Ending Rainbow's Winter FUNraiser and some we did today.  First I want to share the link to NNER because they are a special organization to us as they support all Trisomy's not just the common ones.  Simon's is very uncommon and there are many people out there with unusual Trisomy's.

noahsneverendingrainbow.org

I am also running a marathon and raising money for Noah's as we've had to ask them for medical bill assistance this year.

Simon and I Have Been Busy

Here are a couple of more creations.  Simon's hand is the paint brush, but in one I used my own hand with his hands as the background.  These are for sale for $20 a piece, just let me know if you're interested! I will also feature them on Simon's Hands page on facebook http://www.facebook.com/#!/pages/Simons-Hands/289522724401772 Thanks for looking and liking our page and following our blog!

Our Paintings

Simon and my paintings.  More to come soon.



Simon's Story

Simon was the last of 3 boys.  His brothers are 16 & 18 and adore their little brother and take great care of him.  He has an honorary sister named Meagan who also takes great care of him. 

Simon was born on Father’s Day June 19, 2005. I had a midwife this time so the delivery was the best I’ve ever had. I was able to BF with him and let him meet his new family. We spent maybe 30min after delivery together. Then they took me to my room and Dave and Simon headed to the nursery. I was eating my sandwhich when the on-call Pediatrician came in and said that they went to take Simon’s temp and he had no anus. They were not equipped to do that surgery so he will be sent to Primary’s in the morning and they have to pump his stomach. As far as they could tell his kidneys looked iffy, which is common with Imperforate Anus. So they came and wheeled me to the NICU so I could say goodbye one last time before they closed up for the night and Simon was sent to the other hospital. That was one of the first precious moments I would have with Simon. He looked at me so intently and there was such a spiritual connection it was a beautiful moment with my son. I am convinced he knew that he had to get a good look and that his challenges were about to start. Like he wanted to soak in the moment and the sights and savor them.

The next morning I asked my midwife to spring me from the hospital though I was not able to walk well. Simon had surgery at less than 24hrs old. It was the best case scenario for a pull-thru and his new bum worked well immediately. Once he was able to release his kidneys also started functioning just fine and we were happy. He would be home in 3 days. Wow. So Dave and I decided we were going to leave together (we just never left Simon’s side) and get a shower and pack a bag. On the way home, which was about an hour away, we got a phone call. Simon is choking when he eats. We’ve had to suction his food out. We took the fastest showers of our lives, threw stuff in a bag and headed back. Simon was evaluated by an ST and had an x-ray. He had an esophageal stricture.. Surgery number 2 was scheduled. Not even 2 days old yet……So an associate of his surgeon came in to explain the procedure and steps needed, ending with pulling his chest apart to get to the esophagus. Needless to say, I was hoping to not have that option used. We waited anxiously in the waiting room and his surgeon said, I left to go schedule the more evasive surgery (chest spreading option) came back and the radiologist had the balloon down and he is open up 6cm. The absolute best case scenario. An NG tube was placed and Simon could receive food. If he pulled out his NG we would have to go to emergency and have the radiologist replace it. Luckily he waited a few weeks for us to settle down before doing that to us! LOL

On June 27^th we were able to take our little Simon home. All the while being told he’s done and he should pretty much have a normal life after his NG was removed. We were terrified of our little boy. We were so afraid of hurting him or pulling out his NG; but got into a routine and began to live our lives. One day while changing Simon’s diaper I saw this HUGE lump in his scrotum area. I called his pediatrician who had me come in to confirm an inguinal hernia. *sigh* surgery #3. Little did I know we’d be counting up to 12 by the time he was 4 years old. By this point I was scrutinizing every part of his body wanting to avoid these surprise issues. But really trying to be hopeful that we were indeed done with surgeons after this one more surgery. All told he was born with an imperforate anus, ASD, PDA, esophageal stricture, bi-lateral inguinal hernias, sub-mucous cleft palate, hypotonia, strabismus, hearing and vision loss.

Simon had his four month check up and his pediatrician was doing a few tests with his body. Then asked me if we had been referred to Early Intervention and/or Genetics. He began to tell me how Simon had low muscle tone, Plagiocephaly and possibly terc---whatever its called; tight neck muscles. His eyes were also crossed and he was concerned there was a genetic issue. I had no clue there were genetic issues other than your top 3 so I didn’t hurry to genetics. We instead had his eye surgery done at a regular hospital; big mistake. They were afraid of him and were not afraid to say it. I then filled out the information for genetics. I heard that they wouldn’t even call if they didn’t think there was a genetic issue. We got an urgent call 2 weeks after I sent the information. Then it took about 3 months to get in.

Genetics took Simon’s blood and discovered he had additional chromosome material on his 20 chromosome. They then took Dave and my blood to determine if we were a carrier for this abnormality. After about 5 weeks we got the final karotype and discovered that Dave had a balanced translocation. The balanced translocation resulted in Simon’s unbalanced translocation. Trisomy 11Q Monosomy 20P; which basically means he has extra 11 chromosome and is missing a portion of his 20 chromosome. Which makes him a one of a kind!

Simon has had metabolic issues that flare up especially when he’s sick. You think of a brain that has delays and forget that it’s not just cognition, that brain controls the whole body; its bound to have other issues. Simon is deaf and blind, but does have some capability of both. We are co-signing and doing some tactile communication. He is not yet sitting, crawling or walking.   We have private medical insurance that seems to cover less and less for Simon each passing year.  Simon still has severe sleep apnea even after surgery to help correct it and is facing more tests and possibly more surgeries.  He is on night time oxygen and the monthly cost for that and all of his feeding supplies is hundreds a month.  We are also needing to start making changes to our home to accomodate Simon's needs and keep him home.

Simon is my Simon. That’s all he needs to be. I love him just as he is. I wasn’t expecting this long, sometimes heartbreaking road, but I’m glad I got to walk it. I’ve experienced so many wonderful things too. It was never easy to see him struggle with his health and goodness knows we thought we were going to lose him often. But in a couple of months he will be 5! His delays never bothered me. I guess I’m just pragmatic and I tend to only worry about what is in my power to change. As Simon’s mother and the mother of my two oldest boys all I can do his help them be the best they can be. No matter what level they function on.