Today, we received the gift of HOPE

Has anyone ever given you a gift that changed your life? It can be ANY kind of gift at all. Something material, or something not? Our children are blessings and gifts with bows on them bigger than we ever thought possible!! When you receive the news that you have a sick child, let's be honest, you don't think of that as a gift right? I know I didn't, but I do now. Well, what happens when you get the GREATEST gift of ALL other than the birth of your baby? We received that gift today and I cried tears of JOY. Today, we received a gift that will change our lives and how we live it. We received the gift of HOPE!!

At 9:00 am this morning, we took Ryan to Children's Hospital for a second opinion on her heart. We met Dr. Kan Hor for the first time and listened closely to what he had to say. As most of you know, we had some issues with her regular cardiologist because our questions were not being answered thoroughly and it made us very uncomfortable. For the FIRST time since her diagnoses, almost 2 years ago, we got the answers we have been looking for.

This is Dr. Hor, and he has changed our lives for the better.

We knew this appointment was going to go well as soon as he walked in the room. He scared Ryan when he first came in because she was standing by the door. He looked at her and said "WOAH....I'm sorry little missy, let's try that again." He then went back out of the room and shut the door behind him. He slowly opened it again and barely stuck his head through. He gave Ryan a BIG smile and simply said "peek-a-boo beautiful." She gave him a HUGE smile back with a little giggle in the mix. For those of you that don't know, this is so great because every time she has seen her previous doctor, nothing was ever done to make her smile or laugh. It was pretty much like she would come in, tell us results, say to come back in 3 months, and out the door she went, as quickly as possible. We could tell right away, that's not how this doctor was which automatically made us feel better about him. He shook our hands and then sat down and started talking to us about personal things. He said he had a 21 month old daughter at home and another baby on the way, and then asked if Jay and I were planning on having any more kids. Even if he didn't really care, it was nice that he acted that way. He made us feel like he wanted to get to know the people caring for our precious heart baby. He wanted to listen to Ryan's heart first so instead of just sticking her on the exam bed and pulling out his stethoscope, he had her sit in my lap, and he had her help him to make it more fun for her. He let her hold it, and then just guided her hand around her chest where he needed to listen. We could tell she thought it was really cool that instead of not being able to touch anything, she got to help.

One of our biggest questions that we've always had is "if you know she needs surgery at some point to fix her valve, why can't you just do it now and get it over with? That way she won't remember it." In the past, this question was answered with a simple "that's just not the way we do things." OK...but WHY is that NOT the way YOU do things? He was able to REALLY answer us today. Dr. Hor explained that they don't typically repair a valve. If they do surgery on Ryan NOW and replace her valve with an artificial one, she will outgrow it probably within the next 5 years. This will lead to ANOTHER valve replacement by the age of 8, the latest. Once that surgery is done, she will outgrow that valve probably around the age of 17, the latest. With each surgery, the risk becomes greater and greater. Every time surgery is done, she is put on bypass and given a strict regimen of meds to take daily for 2 whole months AT LEAST. Insead of giving her around 5 surgeries by the age of 30, why now wait AS LONG AS POSSIBLE and only give her ONE....MAYBE TWO?? Well, that makes GREAT sense to me!!! Although Ryan's balloon that she had on January 9th didn't do what they wanted it to do, it did improve her heart somewhat. Her gradient at that time was 55. After the procedure, it dropped down to 29. They had hoped, and with the statistics, that it would go down to between 0-5. It obviously didn't do that, and since then, her gradient has gone back up to 39. She's borderline mild and moderate right now as far as the severity of her disease. Our hopes are that she will stabalize, but if that doesn't happen, once the number get's back up to around 50 (the severe range) Dr. Hor said he would want to try another balloon. This is something her previous doctor told us would be a waste of time since it "didn't work" the first time. Dr. Hor's take on that is, "it will buy her more time." If they do another cardiac cath, they can knock her numbers back down, even if it's just a small amount, to keep her out of the severe range of stenosis. By doing a cardiac cath every time her numbers jump back up, they are able to keep her at a number that is good enough to keep waiting on surgery. He said that the ideal situation for us right now would be to be able too wait at least 10 years before surgery. Even though that will be harder on her physically and mentally, it would be the best thing to do for her. Why couldn't anyone ever tell us this before?? YA GOT ME!!

It all makes sense now. It's not "just how they do things." They have a REASON..and ACTUAL REASON for this, and it is to benefit Ryan. It's amazing when someone gives you a breath of fresh air and gives you HOPE for your childs future. We were also told that Ryan would never be able to play sports. Today, we were told that her body will not do more than it is capable of doing. If she wants to play sports and get involved, she can do so, as long as we as parents, and her realize that she does STILL have heart disease and that if she feels like she needs to take a break or stop doing something, that's what will happen. But, she can TRY. I've never felt this GOOD about a doctor. He made us feel so comfortable and I just cannot get over how great the appointment went.

He did tell us that even though this is good news and that we now have a PLAN for Ryan, she does still have a CHD. We need to keep in mind that she will be different than other kids. If she gets sick, we need to keep her at home and away from extreme germs. We still have to watch her and make sure her breathing is ok. This is something that will ALWAYS need to be done and we're JUST FINE with that. It's just so nice to hear though, that this doctor has great HOPES for Ryan. It could still very well happen that she needs surgery sooner than 10 years. If her numbers jump back up, and they do a cardiac cath that doesn't make the numbers go back down, then it will be time to discuss other options at that point. But, until that day comes, we are going to breathe a little easier and probably sleep a little better.

After this amazing appointment today, Jay and I both decided that Ryan will no longer see her previous doctor. We just felt way to good about the one we saw today. Since she didn't get an echo today, and still needs one every 3 months, we will be taking her back to see Dr. Hor in December to get her echo done and discuss the results with him, the man that has given us te gift of HOPE.

Here is Ryan playing with the "stickers" from her EKG...she thought it tickled when she would stick them on and pull them off. SILLY GIRL.

Her favorite thing about seeing the cardiologist....NO CLOTHES!!! She can run around in just a diaper and be REALLY happy doing it.

OTHER NEWS:

Our team, HEALING HEARTS, raised $500.00 for Cincinnati Children's Hospital Cardiology Department. There is still not a total raised OVERALL but I will let you know when I do. We did pretty good, but am hoping to at least double it next year. In the mean time, I'm starting to work on getting Ryan's birthday party planned, and trying to get a little Christmas shopping done at a time. WISH ME LUCK!!!

I want your comments!!! Let me know of a gift that you have received that just MADE YOUR DAY. It can be ANYTHING. Or more than one thing. Something you may or may not still have, but that you will NEVER forget.