Abby:
She's such a girl, lately. She's getting super sensitive. If you give her a stern "NO!", she falls apart, but slowly. It starts with wide eyes and an I-can't-believe-you-would-take-that-tone-with-me look. Then the lower lip comes out. Then, with perfect dramatic timing the tears start to fall. I usually end up laughing at her, it's just so ridiculous. Trevor can't stand it. He's driving me crazy with all the coddling. He'll pick her up and apologize over and over. "Daddy's sorry princess, don't cry." Give me a flippin' break, dude. He's creating a monster. He gets to raise her in the teen years, that's all I've got to say. Anyway, I bought her the cutest hat from a friend of my SIL, Chelsea. Her website is http://www.jylholidaycreations.com/. I couldn't resist taking a few shots of "princess" in her new, posh hat.
~I'm trying to teach myself how to use photoshop. Trying is the operative word here~
Carson:
Got in the mud at Preston's baseball game. Not once, but twice. Grrrrrrr. I have to admit, the boy does give me the best blogging material. Here he is with his best bud, Luke (I'm always tempted to steal Luke, he's just so cute).
~First time his hair came away unscathed~Second time, the hair wasn't so lucky~
Preston:
Some of you know that 2 years ago, Pres was diagnosed with a Bicuspid Aortic Valve. A normal heart has a tricuspid valve, or 3 leaflets, Pres only has 2. As distressing as this news was, our cardiologist reassured us that he would have a normal life with the exception of annual cardiology appointments and antibiotics before seeing the dentist. We finally have gone back to have another check up since our initial visit. It was a royal pain in the posterior trying to get all his medical records forwarded to the new cardiologist. Another reason not to move! However, I really like the new doctor. He takes his time and explains things very well. We saw him a week ago and everything was pretty routine. We had to go back yesterday to do the ultrasound, as the tech wasn't in the day we were there. I got a few of stunners while I was there. First, his valve has started to thicken. Second, his valve has started to leak. Third, the velocity in the heart chambers elevated slightly. Fourth, he will have to have his valve replaced in his 30's or 40's.
The first three are normal occurrences for anyone with his condition. Dr. B. said he wouldn't even call the them minimal, he would call them trivial. So that was good news. Still, it's a little disconcerting that there has been any change in the last couple of years. It's to be expected, though. Trevor and I were troubled about the surgery part. We always knew it was a possibility, but now it's looking like more of a certainty (is that a word?). I've been doing a lot of googling this past week. Most likely, the surgery they would perform would be the Ross Procedure. I'm torn between being sick with worry and being fascinated with all that I'm learning. They would replace his aortic valve with his pulmonary valve. The pulmonary valve would then be replaced with a donor valve. Isn't medical technology amazing? Who knows what they'll come up with in the next 30 years before he actually has to have the valve replaced.
The ultrasound was especially cool to me. I have a weird ability to separate myself from the situation.
Then, I come home and get to dwell on the fact that this is all happening to my son. I think of what his situation will be then. Most likely, he'll have a wife and children. How will it affect them? Being a former insurance examiner, I'm even worried about his chances of getting health or life insurance. Preston has had his moments of worry too. We've been trying to explain it all to him in a positive way, but he's too smart. He tells us that he doesn't want to have surgery and asked the big question, "Why did Jesus have to make my heart different? Why couldn't he have made it the same as everyone else?". Talk about heart wrenching! We seized on the moment to teach him about trials and that he actually has a very healthy body. Heavenly Father has given us awesome doctors today that will help him fix his heart when it needs it. Still, it's hard to explain "why" to a 6 year old.
Having said all this, it won't change our life much. He's not restricted from any sports, in fact, he's highly encouraged to be active. We'll continue to watch and wait. I just thought that I should start documenting his little journey now. I'm so grateful that we live in a modern time, in a modern country, where doctors and hospitals are accessible and information flows freely from my computer screen.
On a lighter note, he's on a hitting streak. He has had a hit in every game since game 2. What a stud, right?
17 comments:
That is so sad..... Do they think he might have to have surgery any sooner? I love abbys hat.
Abbys hat is darling. And what to say about Carson? Carson will be Carson. Thats why we love him! Don't worry about the valve thing with Pres. I read that it won't be very long until they are doing valve replacements through the groin with cathedars...not even open heart surgery. Made me very happy. In 30 years they will probably have a medication to fix it!!Just keep watching him close and they will take good care of him. Born on my b-day with a bad valve...he should have been my son!
Okay, the "why did Jesus have to make my heart different" just about killed me! I can only imagine how you felt. Sweet boy. I just love him sooo much. Brenda, I think you have a wonderful out look on it. Preston is a fighter and will be an example for others!
P.S lovin the hat!!!
Great pics of Carson. I loved having them over yesterday. They can come to Auntie Chelsea's any day.
I have been wanting to get that hat since I say one on Etsy! I can't justify getting it before summer has even started because she won't be able to wear it for months. I will have to keep your friend in mind come November. (or maybe october, or September..)
Very cute hat! I didn't know about Preston's heart problems - it can be so hard being a mom. I don't know how your Mom survived all the worrying with Holly's heart.
Man, the joys and the sorrows all in one.
The best part of Preston's situation is knowledge. The knowledge of his condition, the knowledge of the gospel to comfort and help through and the knowledge of doctors and medicine.
Abby, oh man, watch out Daddy... she's got you way wrapped.
Preston and the mud scare me, I have a hard time with the whole dirty boy concept. I'm learning as Andrew is just beginning to explore outdoors and by that I mean dirt and rocks and mud.
1. Couldn't you get a bigger flower on the hat??
2. The mud thing is funny--was it funny when you made Carson clean the tub after his bath!!
3. Don't worry about the heart as long as he is hitting good--the mariners will pay for any surgery to keep their DH healthy!
Cute hat! I think your attempts at Photoshop are great. Love the mud pictures - did you just have to hose him off when he got home?
You have a great outlook on Preston's condition. Such a scary thing - but it's a blessing we live in this day and age with medicine and all.
I agree with Katie... we are so blessed to live in this time! Hooray for medicine and good doctors! It's great that you are able to get so much information about Preston's condition and that you are teaching him to be strong through his trials.
And I love Abby's hat. It is possibily the cutest hat I've ever seen. I think I might look good in one, actually... :)
~A
Just when you think you have a very healthy and normal child something throws you out of whack. At least Preston can live an active, normal life right now! And thank heavens for wonderful doctors and the knowledge we know and they learn everyday. Love the stories about Abby and Carson. Kids, they never cease to amaze and torture me!
wow I never knew that about Preston, good that he is ok for right now, and probably will be in 30 or 40 years too, our twin who died had a hole in his heart, but they don't know if that is the reason or what, so scary I know all too well, and my children ask way to many questions about it all and their questions were concerning for them too. And way cute little girl in a way cute hat.
So cute!
Reading all about Preston's heart takes me back a few years to my days as a telemetry nurse. Too bad I've forgotten everything I once knew to be able to be very reassuring, but you are right in that medical technology is so amazing and there are some really incredible doctors out there. On another note...love the hat and Rachel misses Carson, she was just talking about him the other day...funny that she remembers him still, it's been a while!
that last comment was really from me (thomalee) :)
that last comment was really from me (thomalee) :)
I didn't know about Preston. Just like Holly said, medical advancements are amazing. Just the last few years have seen crazy awesome advancements, just wait for 10 years. It will be nuts.
Oh Cute! Abbys picture is right on the top of that website. I love those hats but there is not a chance that Paige would keep it on her head for more than 10 seconds. It would look cute hanging on her hat rack though! I love having a girl!!
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