I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
Saturday, December 24, 2011
I actually forgot
There were times today that I forgot what today is. I was so wrapped up in what today should always be...Christmas Eve. And I forgot that it is also Tiernan's 2nd "Heartiversary". I forgot numerous times that 2 years ago we were doing this:
I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
I forgot because today we were doing this:
And this:
And a little of this:
And of course a lot of this:
Hooray for new memories.
Friday, December 23, 2011
Healthy Boy from Teeth to Tummy
One of the many reasons I am thankful for other heart moms in my area are the recommendations we receive for various health related things. Like dentists. With Tristan we didn't really give much more thought to which dentist he would see except for whether or not our insurance is accepted or the office is convenient. But then a fellow heart mom found things to be slightly more complex, as they usuallly are given the cardiac history. When her son had to have several cavities dealt with Dr. S was not comfortable with just any dentist performing the proceedures, and he certainly was not willing to consent to them being done in office. Poor Jesse had to visit 3 different pediatric dentists with her son and sift through many different opinions until she at last came to Dr. Beck at Fircrest Children's Dentistry. I am so glad she did. We finally took both boys in for long overdue checkups and cleanings. Tristan did great! He loved the entire atmosphere...a well stocked playroom/waiting area and a big bright procedure room with TV's in the ceiling and personalized drool bibs. Lots of fun stuff. The short story on him is he has one little cavity and a very crowded mouth with a cross bite from his thumb sucking history. (and genetics...sounds like my mouth.) Orthodontia is assuredly in our future.
Tiernan did a fabulous job. I just can't believe he ever had an oral aversion! He let Dr. B brush on the flouride treatment and check out his chompers without a single complaint!
I was concerned that he would have some evidence of enamel breakdown due to his severe reflux and vomiting but Dr. B was pleased. He said his teeth look great and the two fused ones on the bottom are of no concern whatsoever. I am especially pleased that he seems to have established great communication with Dr. S already and so he knows how to handle the complex heart kiddo. (if fact, I believe I saw another mom I recognized from Mended Little Hearts in the waiting room as we were leaving.)
Today was another happy doctor visit. We got to go show off what a big boy Tiernan is to Dr. P and Jessica at GI. Dr. P walked in and (after commenting on how fabulous my long dark hair is...love that guy!) admitted both he and Jessica had been nervous about seeing him. They were worried that maybe he wouldn't be doing as well as we had hoped or whatever. It is difficult for them in their line of work to give up control with kids like Tiernan. He has been on such a long and, at times, very scary road with us. I have very much appreciated his willingness to be flexible and trust us as parents and relinquish that micro-management that is so necessary.
Needless to say, however, Tiernan impressed them both with his steady weight/height gains and the wide range of foods he now eats.
Speaking of:
Stats are as follows:
Weight: 27 lbs 4.5 oz 27th percentile!
Height: Just shy of 35 inches 31st percentile!
Weight for Height is 35th percentile. This is perfection. They like cardiac kids to be anywhere from 25th to 50th percentile so he couldn't be any better!
He was so grown up during the exam. Dr. P could hardly believe it! This is a kid who would scream from start to finish but not anymore. He is such a big boy. :)
Admitting that he felt a tad silly asking to see him in 6 months when even cardio doesn't feel compelled to see him for NINE months, he still doesn't feel 100% comfortable going longer than that. Hmm. I get the feeling he doesn't trust T not to do something sneaky. hahaha. He knows him too well.
And truthfully, though I really believe Tiernan is doing great and will only continue to do well for the near future, I am fine with knowing we have a check-in person whenever we need it. Like I said, I am so thankful for Dr. P. He cares so much for our son and takes such joy in all his accomplishments. We are truly blessed with incredible doctors.
The other adorable thing is that Tiernan now has rituals when he goes to GI. At the opposite end of the 3rd floor from GI is a little statue of a bird and some other artwork. He absolutely MUST go visit his bird every time. I don't know why he loves it so much, but clearly he does.
Tiernan did a fabulous job. I just can't believe he ever had an oral aversion! He let Dr. B brush on the flouride treatment and check out his chompers without a single complaint!
I was concerned that he would have some evidence of enamel breakdown due to his severe reflux and vomiting but Dr. B was pleased. He said his teeth look great and the two fused ones on the bottom are of no concern whatsoever. I am especially pleased that he seems to have established great communication with Dr. S already and so he knows how to handle the complex heart kiddo. (if fact, I believe I saw another mom I recognized from Mended Little Hearts in the waiting room as we were leaving.)
Showing off his healthy chompers.
Today was another happy doctor visit. We got to go show off what a big boy Tiernan is to Dr. P and Jessica at GI. Dr. P walked in and (after commenting on how fabulous my long dark hair is...love that guy!) admitted both he and Jessica had been nervous about seeing him. They were worried that maybe he wouldn't be doing as well as we had hoped or whatever. It is difficult for them in their line of work to give up control with kids like Tiernan. He has been on such a long and, at times, very scary road with us. I have very much appreciated his willingness to be flexible and trust us as parents and relinquish that micro-management that is so necessary.
Needless to say, however, Tiernan impressed them both with his steady weight/height gains and the wide range of foods he now eats.
Speaking of:
Stats are as follows:
Weight: 27 lbs 4.5 oz 27th percentile!
Height: Just shy of 35 inches 31st percentile!
Weight for Height is 35th percentile. This is perfection. They like cardiac kids to be anywhere from 25th to 50th percentile so he couldn't be any better!
He was so grown up during the exam. Dr. P could hardly believe it! This is a kid who would scream from start to finish but not anymore. He is such a big boy. :)
Admitting that he felt a tad silly asking to see him in 6 months when even cardio doesn't feel compelled to see him for NINE months, he still doesn't feel 100% comfortable going longer than that. Hmm. I get the feeling he doesn't trust T not to do something sneaky. hahaha. He knows him too well.
And truthfully, though I really believe Tiernan is doing great and will only continue to do well for the near future, I am fine with knowing we have a check-in person whenever we need it. Like I said, I am so thankful for Dr. P. He cares so much for our son and takes such joy in all his accomplishments. We are truly blessed with incredible doctors.
The other adorable thing is that Tiernan now has rituals when he goes to GI. At the opposite end of the 3rd floor from GI is a little statue of a bird and some other artwork. He absolutely MUST go visit his bird every time. I don't know why he loves it so much, but clearly he does.
Wednesday, November 30, 2011
He's a big boy now
T had his cardiology appointment today.
He was a total rockstar.
For the first time EVER he didn't cry or squirm one bit for the duration of the EKG and Echo!
Amazing!
I wish I had been there to see it. Jason took him. Tristan got to go too. I hoped he would check out the Echo stuff, but he said he was too busy watching Curious George. :)
Weight is holding steady right around 27 lbs and he is now 34 inches tall.
His sats were a "perfect" 85 and Dr. S said his Glenn site is wide open and his coarct is unchanged from the last time. The valve leakage is also the same as it was 6 months ago.
By the way...I still can't believe it has been 6 months since his last visit to cardio and we haven't had any issues. None whatsoever!!!!
Oh, and speaking of time between appointments...I am in a state of shock as Jason tells me he does not have to go back in for...wait for it...9...that is N-I-N-E months!!!!!!!!!!!!!!!!! Combined with no GI appointments (after December), that makes...hold on, let me do the calculations...ZERO appointments (except OT) until next SEPTEMBER?!!!!! Is that POSSIBLE?!!!! Shock, I tell you.
Perhaps that is a paraphrase rather than a direct quote, but to translate...his sats are great...there is no stress on his heart...since the Fontan causes all kinds of liver issues etc...we are not even going to talk about it.
Have I mentioned how happy I am that Dr. Stefanelli is in charge of Tiernan's care?
Finally, as if that wasn't enough awesomeness, Chris gave us the go ahead to d/c his Lasix.
wha-wha-WHAT?!
Cold turkey. Gone. See ya later diuretics!
*****Confession*****
As exciting as this is, I am nervous. Last time the Lasix was d/c'd he was in congestive heart failure within 2 months. Now, I know there were many other contributing factors there...like an impossibly narrow aorta, so I am not spending much time worrying, but there is some mild concern. Please pray all goes well and this does not add any stress to his heart function.
I'm so proud of my big boy. I'm sad that this is even a necessary milestone, but it is. Just as Nurse Jodi said, once he is 2 he will cooperate so much better for the echos. She is so smart.
And Tiernan is so awesome! :)
He was a total rockstar.
For the first time EVER he didn't cry or squirm one bit for the duration of the EKG and Echo!
Amazing!
I wish I had been there to see it. Jason took him. Tristan got to go too. I hoped he would check out the Echo stuff, but he said he was too busy watching Curious George. :)
Weight is holding steady right around 27 lbs and he is now 34 inches tall.
His sats were a "perfect" 85 and Dr. S said his Glenn site is wide open and his coarct is unchanged from the last time. The valve leakage is also the same as it was 6 months ago.
By the way...I still can't believe it has been 6 months since his last visit to cardio and we haven't had any issues. None whatsoever!!!!
Oh, and speaking of time between appointments...I am in a state of shock as Jason tells me he does not have to go back in for...wait for it...9...that is N-I-N-E months!!!!!!!!!!!!!!!!! Combined with no GI appointments (after December), that makes...hold on, let me do the calculations...ZERO appointments (except OT) until next SEPTEMBER?!!!!! Is that POSSIBLE?!!!! Shock, I tell you.
An actual conversation between Jason and Dr. S:
J-What are your thoughts regarding the Fontan?
Dr. S.-I don't even want to discuss it until we are close. And although it is not common practice now, within 5 years I expect to see recommendations changing to delaying the Fontan for as long as possible.
Perhaps that is a paraphrase rather than a direct quote, but to translate...his sats are great...there is no stress on his heart...since the Fontan causes all kinds of liver issues etc...we are not even going to talk about it.
Have I mentioned how happy I am that Dr. Stefanelli is in charge of Tiernan's care?
Finally, as if that wasn't enough awesomeness, Chris gave us the go ahead to d/c his Lasix.
wha-wha-WHAT?!
Cold turkey. Gone. See ya later diuretics!
*****Confession*****
As exciting as this is, I am nervous. Last time the Lasix was d/c'd he was in congestive heart failure within 2 months. Now, I know there were many other contributing factors there...like an impossibly narrow aorta, so I am not spending much time worrying, but there is some mild concern. Please pray all goes well and this does not add any stress to his heart function.
I'm so proud of my big boy. I'm sad that this is even a necessary milestone, but it is. Just as Nurse Jodi said, once he is 2 he will cooperate so much better for the echos. She is so smart.
And Tiernan is so awesome! :)
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