On Thursday night when I was changing Oliver into his jammies, I noticed he had a rash on both his arms. It was very faint but definately a reaction to something. I had given him his first dose of his new blood pressure medication a couple hours earlier so I was worried that he might be having an allergic reaction to it. It was still there in the morning, so I called and left a message for his cardiologist. I also called his pediatrician to ask their opinion. When I spoke to Carol, Dr O’s wife she didnt seem worried, and said to give him his regular dose and watch for reaction. So I did, and we went off to school like every other Friday. I couldn’t shake off my worry all morning. If this med doesnt work for Oliver, it would put us closer to a surgery, and that is all I could focus on.
By the time I came home, the cardiologist had still not called, so I called again and they said to have our pediatrician check the rash. Thankfully, Dr O was certain it was a contact rash from sunscreen possibly. Wish I had gone to him in the morning!!!
Our next appt is on the 23rd of May at Lucille Packard to check Oliver’s blood pressure and to up his medication. We will continue to raise the level til it reaches a point where Olivers has a dry cough. This cough will indicate that he has reached the ideal level for his body and we will continue this dose as long his doctors deem it helpful in reducing some of the potential damage we are seeing on his echo.

Well, it finally came. And it needed to because of the sickness it was bringing me. I never really realized how anxiety can cause true sickness. I have had headaches and a sore throat (maybe allergies), my muscles and veins are super sore all week long.

It, of course being the hospital visit to see Dr. Rosenthal and the team of cardiologists that manage Oliver’s treatment. Everything went super smooth this morning. Even though we all got up really early- Oliver was up and moving around in bed at 4 this morning. I finally gave up on us getting more sleep by 5. We, Tom, Oli and I went downstairs to get our day started.

We left the house just after 7, Oliver in a very happy mood. He asked where we were going and I told him to an appointment. He asked “Me”? I said yes. We left it at that till we pulled up to the hospital, where we saw our HERO, Dr. Perry. He looks great actually with his hair long and scruffy. Kind of like a surfer. We waved and said hi quickly as he walked on.

Steve performed the echo without incident. Oliver and I laid on the hospital bed watching Mickey Mouse while Steve and Tom talked of fishing and heart stuff. He then got a EKG, which was super quick. The only part that bothered him was the removal of the stickers. Oliver got to pick from the big treasure box, now that he is almost 3. What you know, he found a ball. A supremely bouncy and small ball!!! Oh boy that was tricky. We ran into some of his past team, Dr David, Dr. Seth and Dr. Mary. Some of our favorites.

We didnt have to wait long for Dr. Rosenthal and his crew. This is what I got from him (Tom has a slightly different account, which is normal for us). The echo showed 2 things that were not good for Oliver. First the back flow had increased. (not what we want to see) Secondly and more importantly he was alarmed by the fact that his left ventricle has enlarged since the last visit. So what do we do now? First of all we have to make sure that the ventricle is taken care of , if it gets too damaged- it is not repairable this would put Oliver back on the heart transplant list. He is as of today on a blood pressure medication 2x daily called enalapril. This will hopefully reduce his blood pressure, therefore relieving the left ventricle. We will check with an echo and a MRI in 3 months to see if there is any change after taking this med. If this medication works in this manner we hope, we can push out Oliver’s first surgery, which will most likely be open heart Ross procedure. We would then best case scenario have a mechanical valve placement when Oliver reaches the right size which could be about age 12-14. If this med does NOT work, we will need to have surgery within 3-6 months. Our goal is to have the least amount of intervention with Oliver’s heart. That is why we want to push out surgery as long as possible. With that said we also need to make sure that this pressure that his left side is feeling does do enough damage that it would lead to severe heart problems in the next 10-20 years.

I got alot out of this meeting. I now understand that Oliver will continue to look great from the outside even without any intervention for the next couple of years, BUT, we wont know the irreversable damage that sitting back will do to left ventricle until later on. With that, I now believe that our doctors are right in saying that Oliver has severe heart issues. I also know that Oliver can overcome all obstacles. He is a fighter with a will to live, strive and achieve more than is explainable.

Please help us to pray that this medication will give his body the power to reduce his ventricle to good size for his body. That he continue to grow big and strong and healthy.

At Disneyland a few weeks ago a ride attendant told Oliver, “You are not big enough to get on these bumper cars”. A week or so later, Oliver says to me, “Mom, I’m BIG” ~ I said Yes you are! Oliver has gained 1.5 lbs in the last 3 months! Way to go Big Boy! Love You!!!!

I hear this at 100 times a day, and I just cant get enough! Its so sweetly said and I know he knows that I love it because I always seem to have to repeat it and then grab him and kiss him all over.
Well, Oliver finally has his shoe lift in his left side. Its .08 cm and its already made a huge difference. I dont see him falling nearly as much. He seems to be alot steadier as he runs and jumps. He is really practicing his jumping and getting quite adventurous with it. When we are outside gardening, yes I have been gardening lately, he jumps off all the rocks around the grass. I keep an eye on him, but try not to assist. Its really hard not to try and sway him- it looks dangerous to me- but he is really practicing this new acheivement! It was only less than 2 months now that he started sliding off our bed on his own- so he is truley making progress! I slipped on his boots yesterday without the lift (theres just not enough room in there for his foot and lift) WOW, what a difference! I could hear his hobbly gallop. I really think this is what he needed and Im glad so cross that off our list. Now to get the shorter and skinnier leg to grow! We have been doing leg excercises with his left leg where he pushes against a band placed on the arch of his foot. He pushes against my resistance.
Music still gets his sweet body moving and when he hears anything with a catchy tune (especially latin) he sweetly moves his upper body, not quite sure how to get his hips to join in- but you can see him trying to put it all together.

So I know I needed to update our blog on our heart appointment from last month. Its been hard for me to do, not for lack of time as much as a mental block. I wasn’t soo excited about what Dr Rosenthal said. No really great big happy news. He did give us some options:

Dr Rosenthal's
Recomendations

So here is the thing, he says this but after consulting with the surgeon, things don’t sound as hopeful for repair. In the write up that we normally receive about 5 weeks after our appt (it is an explanation of our appt and results of the testing) he says repairing the valve would be very unlikely. BUMMER!!! Repairing instead of replacing would of course be a better option. The Ross procedure, which is the surgery that Dr.R is thinking Oliver will most likely need is the replacing of his valve. This valve would have to be replaced as Olivers body grows- possibly as much as every couple of years.

My hope remains that we can put off any surgery- the longer the better! With that said- We are soo thankful to have had 2 full years with only 1 surgery! (for placement of Mickey button). Oliver has passed all the doctors expectations and I hope he continues on that path. Go Oliver!

Energy, thats the feeling I get as a mother when I see my children”s sweet smiles in the morning. They are precious and innocent, I just can’t get enough. When Tom or I come home, Oliver drops everything to run into our legs to give them a HUGE hug. Usually a complete leg wrap and squeeze its the BEST!

Want to keep up with Oliver- visit his site- www.oliveryore.com

Want to keep up with Oliver- visit his site- www.oliveryore.com

Begin forwarded message:

> From: Silvia Payne > Date: November 13, 2010 5:27:30 PM PST > To: Maria Meunier , cecilia >, Claudia Yore , abresani@bresani.com > Subject: Showing off >

> > He’s so proud of himself… > > > > > >

Want to keep up with Oliver- visit his site- www.oliveryore.com

Its been a really long time since I’ve posted anything! Now there is really no good excuse especially now that I have my new MacPro!

This past week has been been super jammed. It all started November 4th with a cardiology appt at 7:30 am. But I will get back to that. Last night 11/7/10, I pulled Oliver’s Mickey button out and didn’t replace it. It has been since the 19th of August that I have used it. Oliver has been maintaining his weight, though not gaining very much (actually even losing a bit). I know he is truley able to grow on his own without my assistance. In fact he has not thrown up since he started controlling what and when he eats. (which is quite often. He has become a very insistant eater. Like give it to me now or else. This mild mannered baby has turned a bit fearful at times.

For 3 days leading up to the removal of his button, I have been giving him Zantec twice a day to help reduce any stomach acid. Sunday night after he fell asleep, I pulled it out and then bandaged him up. Before covering it, I took a good look at this hole- it actually looked like an earing hole but a lot larger. When he woke up this morning he knew right away something was different. He woke up and I was laying next to him. I wanted to check on his button again ( I did at 3am as well)before he fully woke up. It wasnt as wet as I had imagined. As I was readjusting his jammies, he opened hid eyes big and went straight to his spot where his mickey used to be. I said Oliver I took your Mickey out because you know how to eat now. He looked a slight bit panicked. Bella and Nathan came running in at this time and they both were really excited to see how he was doing without his button. They kept asking him are you OK? I showed him the button I had pulled out and he was very interested in it. Almost as if he really needed the proof. He seemed to understand better. I pulled off the dressing and showed him his belly. The hole had already closed about half way. I put new dressing on it, which seemed to please him. Throughout the day I tried checking on it, but he really didnt want me to. So I left it alone. I eventually just took off the dressing, there was no leakage since the morning so I believe things are healing up well. Tonight he was showed Daddy and Nathan his scar and seemed proud…
I forgot to mention that before I took out Oliver’s mickey- I told Bella and Nathan the plan. They were both soo excited. It was so sweet. Nathan even cried. He said Im so proud of You, Oliver! So genuine and sweet both wanted to stay for the magical moment and when it came time for bed, I could see the excitement in their eyes. They were so happy for him, it was like the night before Christmas… for all of us! I will write later about the cardiology and PT appt!

As Oliver loves to address me, really for a long time now. Where do these guys pick these phrases up? So sweet- I can picture him at 16 saying the same thing. Well the news is out! Oliver is 100% of the time feeding orally!!!!!He put it all together! I honestly was a bit concerned last month about the growth in this area, but now we are just waiting to see how his growth (weight) react to this. I would obviously prefer not to feed him at night. I feel confident that if I leave him to figure it out, he will.
Oliver has had his Gtube since he was 8 months old. Before that he had an NG, which was a feeding tube running through his nose directly into his belly. He has come a long way!!!!! we went in for a GI appt last week and they were thrilled with the turn around. They would actually like to remove his mickey in 3 months if we dont use it in that time!
I cant wait to give him raspberries ALL over his sweet belly!!!!