Mighty Beautiful Heart

What a busy summer it’s been!  I can’t believe that the summer is almost over, and Alexandra starts kindergarten next week!  She’s very excited; however, I believe subconsciously, I’m worrying she is growing up too soon.  Just last night, I dreamed that we were letting her drive a car (looking like she does now!), and she crashed into the back of someone else!

As you may remember, earlier in the year, we were very disturbed to hear that her leaky aortic valve had gotten worse.  We did have a check up with her cardiologist at the end of July.  Naturally, we wanted to hear that everything was better and that there was no problem anymore.  Unfortunately, things don’t happen that way!  The good news is that it was not worse; the bad news is that it wasn’t any better either.  Her cardiologist adjusted her medicine again, hoping that the increased dosage will keep up with her weight gain.  So, we are back to the every four months schedule. 

 As bad as that was, the worst news came when her cardiologist, who first diagnosed her and has been with her since the beginning, announced his retirement!  Then, I just found out that her beloved pediatrician moved away.  These people become so important in your lives that it’s very upsetting to see them go!  While there are other terrific doctors in their practices, I know it just won’t be the same!  Have any of you gone through this?

 Enjoy your Labor Day weekend!

“It doesn’t matter if it’s a boy or girl, as long as it’s healthy.”  These words were spoken by a woman next to me who is expecting a grandchild while I was getting my haircut the other day.  While I spoke those very words myself four years ago, hearing them now makes me a little mad.  I mean, what are you going to do if the child isn’t healthy…give it back!!??!!  There really are so many things that can go wrong, it’s actually amazing that any child is born healthy!

Many times when people hear what we have been through with Alexandra, they are sympathetic and “can’t believe how terrible” it is, etc.  However, I know that there are so many worse things that could have been wrong.  As our Priest told us the day we were given her diagnosis, at least she has something that can now be fixed.  So many families deal with issues far greater than ours every day, and I thank God all the time that she is “fixed.”  We never know what the future holds, but we can be sure to enjoy every precious moment we have with her whether she’s “healthy” or not!

Alexandra had a check-up at her cardiologist earlier this week. Since she had an echo the last time, she didn’t need to go through that this time around. However, she did go through all the other testing. I am happy to say that everything looked great! We were very excited to see her oxygenation level at 97!

It’s funny the things children remember. We were on our way out and passed by the door of the echocardiagram room. The technician (Sue) was standing at the door talking to someone and, of course, talked to Alexandra and commented on how big she is now. Alexandra asked if she could go into the room. When we told her she didn’t have to go this time, she said “Okay, but next time I go in and get a book and animal crackers!” (Every time she has an echo, she eats countless animal crackers that Sue has, and Sue always gives her a book after it’s over.) Sue thought it was so cute that she pulled out a book to give her anyway.

I don’t know how many others have read the whole large volume of Curious George from cover to cover, but we have been working on it each night at bedtime. The other night we were at a part when George was in the hospital, and they were taking an x-ray. I was about to turn the page when Alexandra flipped it back over and said “They take picture of George like they did of me when I was in the hospital!” She even talked about Daddy wearing the Dalmations when she was having it done! (The protective apron they had him wear had a 101 Dalmations themed print on it.) I was surprised that she remembered the apron but was more shocked that she would even realize that what was happening to Curious George in the illustration was the same thing she had gone through. I had to keep back some tears, as memories of that month flooded back into my mind.

The good news is that while something brings up an emotion from time to time, it seems almost like a distant memory. She is doing so well, and I feel like we can really move forward with our lives now!

I can’t believe how the time has flown by since my last post! It’s been quite a whirlwind trying to deal with personal and business issues, getting Alexandra ready for what was supposed to have been her entry into preschool and, most importantly, Alexandra’s 3rd birthday! It’s amazing to see her now having so much energy and being so smart and funny with all she has been through in her short life. No one would ever believe this is the same child who struggled so much just three months ago!

While her birthday was actually on Tuesday, the 15th, we threw a party for her on Sunday afternoon. We knew it was probably going to be the last of the small parties, as we know as soon as she gets into school, our little social butterfly will want everyone to come to future parties! She picked Cinderella as her theme, so everything had Cinderella on it. We even bought her a Cinderella costume to wear during the party, knowing that she will be able to wear it for an upcoming TenderHeart event where the kids dress in costume as well as for Halloween. We took her out to dinner on her birthday and had a great time.

Since March, we had planned for her to attend preschool which started this week. Unfortunately, in speaking with her pediatrician and her cardiologist, they strongly recommended against having her start until she has been able to get her H1N1 flu shot. She was very excited about going, but I don’t believe she understands it has already started and that she is missing it. That’s a good thing! I wonder how other parents of CHD kids are dealing with and preparing for this upcoming flu season. Let me know!

We need everyone’s help! I am encouraging everyone to support the Congenital Heart Futures Act. This bill defines congenital heart disease as a life-long disorder and calls for federal investment in congenital heart disease research and education and the creation of a national congenital heart disease registry. This bill is the first-ever legislation introduced to address the life-long needs of congenital heart patients. As the mother of a child born with complex congenital heart defects, I know how important this bill is to every family affected by congenital heart defects. In order to follow this bill, please go to www.thomas.loc.gov. In the Senate, it is referred to as S. 621; in the House, it is H.R. 1570.

While there is bi-partisan support in both houses of Congress, there is still a lot of work to be done. For those living in MD, Sen. Barbara Mikulski is considered a pivotal vote. Other Senators considered pivotal are: Sen. Hagan (NC), Sen. Bill Nelson (FL), Sen. Whitehouse (RI), Sen. Kohl (WI), Sen Milkulski (MD), Sen. Sanders (VT) and Sen. Schumer (NY). If you know anyone in any of these states, you may want to consider reaching out to them to contact their Senators to lobby them for their support.

As part of this effort, the National Congenital Heart Coalition (NCHC) has partnered with Guide Consulting to set up appointments with individual representatives and senators for those that are interested in lobbying. If you are interested in taking place in one of these meetings, you can email NCHCLobby@gmail.com and explain that you would like to lobby, and they will take care of setting up the appointments and will provide you fact and information sheets and any other information that you need.