Family Matters & The Heart of a Father Update

Dear Friends of the Heart:

This last week was bittersweet. The bitter came in the form of a phone call at ten minutes 'til one Thursday morning. It was my sister-in-law. My husband's brother, Jack, was in the hospital suffering from a massive heart attack. We didn't know if he'd make it.

By 6:30 a.m. Jack had undergone 2 cardiac caths. He was stabilized and at a different hospital than where he'd started out. Things were looking up for Jack. Frank flew out later Thursday morning to be with him and our sister-in-law Lee.

The sweet part also happened on Thursday. My mother, two aunts and one uncle were visiting my cousin in Waco from Georgia and I was to go to Waco with Alex for lunch. I called to tell them that we'd had hardly any sleep and I was going to be a little bit late. The rest of the late morning and afternoon were spent visiting with my mother, Aunt Guyla, Aunt Paula and Uncle Otis.

Thursday afternoon Alex and I drove back to Temple so we could help out at Joey's swim meet. It was a good meet, although the much bigger team from a much bigger city romped our small team. :-( Still, the kids swam well and made some improvements.

Friday my family came to visit me in Temple. We went to lunch with my father and grandmother. What could have been an awkward event went well. I'm so glad to see my mother and father can be together without animosity. Joey and Megan (my sister's daughter) will be graduating next year and it would be nice if they could both be present for those special occasions.

On Friday night Joey and I left for a swim meet in College Station. This was a huge meet of 499 swimmers from all over (mostly central and south) Texas. Our team only brought 6 boys and 7 girls. Our boys finished 6th beating out much bigger teams! Joey got two best times and his relays helped earn the boys some good points. It was fun to watch Joey and his team do so well. Landry, our only diver, is one of Joey's best friends and I was happy to see him do well in the diving -- especially since this was the first big meet for him to attend and compete in as a diver.

We didn't get home until close to 1 a.m. on Sunday. The weekend was half over. But there was still Robotics to do! The X-Bots came over and worked very hard on their missions for a while before taking a break. During the break I talked to the boys about what they were doing and how to talk to judges about how they were interacting, changing responsibilities for missions, programs and building arms and attachments, and strategizing on the best way for their robot to earn the most points. It was an interesting meeting.

Coach Cristy and I also went over their homework from last week and reminded them about the field trip we're taking on Tuesday to the Families in Crisis center in order to continue working on their community service/robotics project. We got a lot done in 2 hours!

Then it was on to McGregor. This is a small town near Gatesville and not far from Hewitt (where my cousin lives) and Temple (where I live). We went to a restaurant called Luigi's which had wonderful food and excellent service. I was impressed.

It was the first time for me to meet my cousin Michelle as an adult. I had met her as a little girl, but that was many years ago. I also had the opportunity to meet her husband Ray. They both seemed very nice, but we didn't have much of a chance to talk because of the sheer number of us at the restaurant and the fact that my family was at one end of the line of tables and my cousin was at the other end. Still, we managed a little bit of conversation and I gave Michelle my card, so we might get together in the future.

Frank didn't get home until midnight on Friday and he had to pick up Alex from my dad's house. Saturday they went to Merit Badge College at Baylor University. We kept up with each other -- and Jack's progress -- thanks to our cell phones. My sisters-in-law (Susan and Karen) were also driving back home to Texas. We had a lot to keep up with and worry about. I know Frank and I both felt so much better on Sunday when we knew everyone was home safe and sound.

After Merit Badge College, Frank dropped Alex off at home and he went on to Scott & White to compete at the Toastmasters International Division Level Humorous Speech and Evaluation Contest. Frank represented our Toastmasters club, Texas Stars Toastmasters, and did a fine job, although he went over time by 6 seconds and didn't bring home a trophy.

It looks like Jack and Alex may be able to compare scars someday. Today they did one of a series of 2 MRIs to determine when Jack can undergo open-heart surgery. Thanks to what Alex has been through, I understand a lot of what Jack is going through right now. I never expected so much information to be the same (between pediatrics -- especially since Alex was an infant -- and adult cardiology). The nice thing about that was that when my s-i-ls had questions, and they couldn't reach Frank, they could talk to me and I could explain what they were curious about. I always reminded them that I'm just a mom, not a nurse or a doctor, but when I told Frank about our conversations, he told me I did a good job explaining things. :-) That made me feel a lot better. I hate thinking I know just enough to mess things up!

So with all of these family matters going on, it's difficult to find time to work on The Heart of a Father; however, Dad made time this week to completely finish Chapter 1! Frank is writing the connecting material for the book and he sent Dad what he had written. Dad then completed the line and copy editing and feels the first chapter is complete. I still need to give it my stamp of approval and we still have to run it by all of the authors, but it's much closer to being complete than it ever has before! It's very exciting to see the book coming together.

We were trying to do a chapter a week, but things might have to be delayed a bit. Daddy is having eye surgery this week and he may be out of commission for a few days -- as will I since I'm going to help take care of him. It's a pity we don't have unlimited hours to work on finishing the book without interruptions, but that's just not the way life goes.

I hope all of you have a wonderful week. It's going to be another big swimming week for Joey and me. On Thursday we leave for TISCA in Corpus Christi. This is one of the biggest high school meets Joey will take part in. This time they'll have their whole team together and their relays should be a bit different. It should be an exciting meet. I plan to be back in time for Robotics on Sunday.

Meanwhile Frank and Alex will be attending Merit Badge College on Saturday to finish up Alex's merit badges as he strives to become an Eagle Scout. He still has a couple of years to go, but he is working very hard toward that goal.

When I get back from being out of town, I am hopeful we'll have Chapter 2 done. I'll keep you all posted on how that progresses.

Sincerely,

Anna Jaworski

International Quilt Show -- Houston

This picture is (l-r) J.D. McCain, Nancy McCain, me and Alex at the International Quilt Show in Houston, Texas. You can see one of the beautiful Congenital Heart Defect Awareness quilts behind us.

We had a wonderful time at the quilt show! J.D. and Nancy did a terrific job of setting up the quilts, information about congenital heart defects and they even had two sewing machines with a lot of material, an iron, cutting board, rotary cutters and everything else needed to make a block for a heart quilt. They gave lessons, so Alex and I made each made a quilt block. Here are some pictures of Alex making his quilt block.



Here is Alex picking out his material. Then J.D. told Alex how the sewing machine controls work. The third picture (above) is of J.D. demonstrating how Alex would need to use two hands to feed the material into the sewing machine.



J.D. shows Alex where to start sewing the first corner. Then Alex sews the opposite corner on. In the third picture you can see where both corners have been sewn on.



Now you can see J.D. ironing the seams, showing Alex where the big corner piece needs to be sewn on and then cutting the excess material.



J.D. then draws the top center part of the heart that will be blue and he pins the blue material in place. When he was done pinning the material, he showed Alex how it had to be sewn.




Here Alex is sewing one side of the blue material. The middle picture shows J.D. watching until Alex is finished (3rd picture).



Again J.D. irons, watches Alex finish the last seam and then removes the pins.



Once again J.D. works a little magic and TA DA! Alex's quilt block is complete. It's amazing what two guys can do when they put their heads (and hearts) together.

Not to be outdone, check out the pictures of my quilt block and Alex's below. Now our blocks will be part of the Congenital Heart Defect Awareness Quilt Project.



As if that were not exciting enough, we had a chance to meet some wonderful people. Alex met some other people who had been affected by hypoplastic left heart syndrome. Corrie Stassen, President of It's My Heart, came to provide helpful information to passersby. She seemed happy to meet Alex and her baby (Gavin) was precious. Unfortunately, I didn't get a good picture of Alex and the baby, although he did hold him for a while. We also met Heather Vinson and Becky Suggs -- more It's My Heart officers. I wish we could have had more time to talk to these fine ladies.

The last person I met was a woman whose best friend's child had a heart transplant. She took one of my cards and agreed to give it to her best friend to see if her husband would contribute to The Heart of a Father. To my delight, tonight I received a phone call from Maureen and she is going to talk to her husband about writing for the book. I am very excited about that because I've been looking for a successful transplant story for the book and her son is rejection-free and will be 17 years old soon.

My father, Bob Daigneault, went to the Quilt Show on Saturday and he also met some wonderful people. Dad also made a quilt block, but he neglected to take a picture of it. Drats! He said it was great to talk to Nancy, J.D. and the many other people who stopped by and whose lives were affected by congenital heart defects. He also found a potential author for The Heart of a Father.

What a wonderful experience for my family and me! I hope that next year we will be able to go to Houston again for this incredible show. If so, I think Alex and I will get a hotel so we won't have to do so much driving in one day (8 hours of driving!) and so we can enjoy some of the beautiful exhibits. I also would like to visit more of the vendors. I bought a little something to help me with another quilt project. Working with J.D. and Nancy has given me the courage to want to do more quilting.

I hope all of you enjoyed the pictures. I think it took me longer to upload all the pictures to the blog than it took Alex to make the quilt block. I thought it would be fun to see a boy with HLHS making a quilt block with a grandfather of a child with HLHS for the CHD Quilt Project. I hope all of my visitors agree.

Sincerely,

Anna

The Heart of a Father Progress Report & Heart Quilt Show

I am SO excited to report that we are making steady progress on the book, The Heart of a Father. This project has laid dormant for about 5 years and I started to wonder if it would ever be finished. I fretted about it, but didn't know how I could continue to homeschool my children, run my business and do all of the other things that needed to be done AND finish the book. With my older son going to public school and my father joining my business, I finally found a way to do it all. :-) There is just no way I could do it alone.

Dad and I have broken the book up by chapters and last week we edited the first chapter -- Dads in the Hospital. This week we edited Dads Around the World, but not all of the essays we have are complete. We also discovered that the Dads Around the World chapter could still use an essay or two, especially if they were from Asia, Africa, South America, Central America or one of the many other countries not represented in the book thus far. We could also use more essays for the Catch 22 chapter. That chapter is about the Catch 22 situation so many dads find themselves in when they have to work to provide the health insurance needed for their family and yet they feel they need to be at the hospital with their child OR having to work while the mother and child are sent to another hospital in another town, state or country OR perhaps there is another Catch 22 situation that a dad found himself in. Write to me at jaworski@vvm.com if you have an essay you'd like for me to consider for The Heart of a Father.

We have received a number of CDs with music for the ebook. It's very exciting to see how the ebook is going to be different from the other books I published in the past. The multi-media aspect really makes it a fun project, albeit a bit daunting. We also have video that we'll be incorporating. I know this is going to be a challenge, but even so, I'm so excited about it! It really will be fun to see how we pull it all together.

This Friday Alex and I will travel to Houston, Texas for an amazing quilt show. The quilt show will feature quilts that have been made in honor or memory of special people born with congenital heart defects. I'm hoping Alex's quilt -- Quilt #9 -- will be there. If you haven't ever seen these quilts, please visit my website: www.congenitalheartdefects.com and look towards the bottom to the links to for Congenital Heart Defect Awareness and Legislation. That's where you can find this link.

It is exciting for us to see Jess and Nancy McCain again. We were fortunate enough to see them when we went to San Francisco. It'll be nice to see them again.

I hope all of you have a terrific week!

Sincerely,

Anna Jaworski

Miami Heart Conference DVD

I am very excited to report that I had a DVD made of the two speeches I gave in Miami at the American Heart Association Heart Heroes Conference. This is the very first DVD for Baby Hearts Press to sell. We learned a lot making this DVD.

It is always hard for me to watch myself on television because I see so many flaws, but I watched this DVD and was happy with the results. The gentleman I hired to put the DVD together did an awesome job of putting in the PowerPoint slides that I used.

Most of the stories I told in my speeches deal with Alexander and hypoplastic left heart syndrome, but I did talk about some other people I know with different congenital heart defects. I mentioned some people from The Heart of a Mother because every conference participant received a free copy of the book. I even used some of the pictures from the book in my presentation. One of the neat things I was able to do was to show some pictures of people from the book, which was published in 2000, and then later in my speech I showed a much more current picture. It's been so much fun to watch some of these young people grow up.

I wanted to upload a picture of the DVD in my blog, but for some reason, this blog is having problems accepting pictures from me. I'm wondering if it's because I'm using FireFox as my browser. For whatever reason, it's not working. :-( I'll try again later and maybe then I'll be successful.

American Heart Association Heart Heroes Conference

I wish I had brought a camera and could have taken a ton of pictures at this amazing conference, but I was too busy talking! It was so much fun meeting the Miami heart families. The children were all over the place having a wonderful time. The parents, you could tell, were relaxed with having the volunteers channel their children's energy into positive experiences. There was an electric excitement in the air. I'm still feeling the effects of it days later.

The keynote address went very well. I had practiced the speech so much before I left that I was afraid it wouldn't feel fresh, but the energy I got from the audience really pumped me up and I think I gave the best presentation in Miami. I know I made some mistakes -- there were some distractions that caught me off-guard, but I know I was forgiven because so many kind parents came up to me afterwards and thanked me for my talk. It really felt good.

I think what made me feel best, though, was when I was out in the lobby during a question-and-answer session and a woman came over to me exclaiming about how Alex was in karate. She turned to her husband and said, "Alfonso can do karate!" Her husband was all smiles and they were so excited to know that they could go home and sign their son up for karate. Apparently he had been begging for years. Now, since they'd heard Alex's story, they were ready to let him try. That makes every minute of preparation I took for my speech worth it.

It was so exciting to see Gene, Ethan and Nathan Bortnick! I met Gene in Philadelphia over a year ago, but I hadn't met his darling little boys. Nathan was born with hypoplastic left heart syndrome and Ethan is heart healthy. Ethan has been all over the news lately because he is a piano genius. He charmed the conference participants with several songs on the piano. What was so delightful was how he told us the story behind the song he composed himself -- at 6 years of age! Then, at the very end, he had us all stand up and do the chicken dance while he played the music on the piano. He is quite the showman! I'm so happy they were able to attend the conference. I only wish I could have had more time to talk to them.

The break-out session speech went well. After the keynote, I had a chance to get a quick bite to eat and talk to some other parents. In the bathroom, I talked with a young mother who confessed to me that she didn't know the name of her child's heart defect. She told me that she had all of the medical records and she was going to go home and look it up. In the course of our dialog, I asked some questions and talked about the most common heart defects. By the time we were done talking, she realized that she did know the name of her daughter's heart defect -- she had a VSD! Now she knew what it was, she told me that she wasn't going to forget it and she was going to make a point of letting her daughter know the name of her heart defect as she grew up. Another victory! Empowering parents is what this conference was all about!

Right before the last talk I was to give, a mother came up to me and told me about her son's karate experience. She told me that her son, who had aortic stenosis, was the last one to finish running the required laps for his Black Belt test. As he was going around for the last lap, all of the kids in his program got up and ran that last lap with him. What a beautiful story! I had to use it in my speech, but I didn't realize it was going to bring tears to my eyes!

The audience was so overwhelmingly supportive and loving. It underscored the importance of having our heart families get together. No one understands us like we understand each other. I felt such a bond with them. It's been a while since I've been to a heart conference but now I'm eager to attend another one -- this time with the whole family. I haven't felt a need for support in my own journey of living with a son with a heart defect lately. I forgot how wonderful it feels to give that support to others (it's different when you're doing it over the computer than when you are face-to-face). The amazing thing to me was that in giving the support away, I felt so enriched! I know I have in the past, but this time it was different. It's been a number of years since I've spoken to a group of heart families. I've changed a lot as a speaker. I was much less nervous about remembering exactly what words I was going to use this time and more focused on how my message could help as many of those parents as possible.

I really appreciate Pepper Adair of the American Heart Association and all the hard work she put into the conference. It was a wonderful experience for me and I believe we worked well together to help other parents of children with congenital heart defects to feel empowered and able to help their children have a bright future. It was the kind of conference you hold deep in your heart for a long time. I don't know if Pepper can appreciate the kind of gift she gave those families to the degree I can. As a heart mom, I know how frightening the future can seem for our children. I also know that by being united and working together we can make our world a better place. Thanks to Pepper, I had a chance to bring some sunshine and happiness into the Miami area. Little did I know I'd leave with more than I brought.

My dad video-taped the sessions. I gave the tape to a gentleman I know who is great at putting videos together. He helped create an awesome video for me that I can distribute to people who are interested in hiring me as a speaker. I want to put it on my website, but my webmistress says it's too long. Eventually I'm going to ask Peter if he can somehow make the video into 1-minute clips. That's what Sue (my webmistress) says it needs to be. For now Peter has his hands full trying to see if he can turn what Dad taped into a DVD others might want to watch. I'll keep you all posted on what happens. If it turns out well, we'll make it available for sale on the website.

I hope the video does come out well because I feel there is so much we can learn from one another. I was a bit nervous part of the time because I was holding a microphone that had a cord and I felt constrained on how far I could move. I really didn't want to trip and fall over the cords and they were not secured properly. I also used a PowerPoint presentation for the first time in my life. That was quite an experience, but thanks to Dahlia, all of the slides were fine and I was able to click through the pictures with the remote control without difficulty. The only bad thing was that I couldn't move very much because of the projector. I usually like to be out where I can touch everyone and that just wasn't happening with this presentation.

I learned a lot about myself in putting this presentation together. The keynote was about finding balance in your life and in the process of writing the speech, I found myself re-evaluating my own life and making some changes. I did a lot of research on the psychosocial development of children with congenital heart defects. I was delighted to see some actual literature in medical journals addressing this important aspect of raising a child with a congenital heart defect. The best news was that our children's heart defects don't have to doom them to a life of unhappiness. Our children have the same opportunities to lead a normal life as a heart healthy child IF we parents do our part. There is a very small fragment of the population whose heart defects are so severe that they are greatly restricted and cannot lead a normal life, but the number of people who are in that category seem to be decreasing as technology and medical advances are helping to cure or palliate most heart defects.

I think I'm going to have to go farther with some of the ideas and things I learned from putting together two speeches for this conference. I have a whole binder of articles I found on the Internet and I think I'm going to be writing more about these topics. Pepper put her finger on some very important isssues in raising a child with a heart defect. Finding balance, looking forward to a bright future and empowering parents were the themes I was to focus on in my speeches. If I can help other people learn those lessons, too, even though they couldn't be at that conference, I will feel our good deed will be so much better.

The Wedding, Miami and Boston

The Wedding

Here is a picture of my grandmother, father, sister and me at my cousin's wedding. I'm standing next to my dad and my sister Chrissy is sitting next to our grandmother. Megan, my beautiful niece, is taking the photograph. :-) Unfortunately, the pictures of all of us didn't turn out well. :-( I hope to have some color pictures after a while. Megan took the pictures deliberately in black-and-white to fulfill a project in school.

So Grandma made it to the wedding and she even danced at the wedding. Megan got a picture of that, too, but sadly it didn't turn out well.

Crystal was gorgeous. I think brides always look lovely, but Crystal was clearly in love with Mike and the look on her face made her more beautiful than ever. I wish those two lovebirds all the best. It was very nice of them to share their special day with us. I can't remember the last time we had so many family members gathered together . . . I guess it was for Grandma's 80th birthday, but Crystal's family couldn't make it to that. So this is the first time we've had that many members of these families together. It was very special.

Miami Conference (see www.congenitalheartdefects.com's calendar for more information about this conference)

Since I've been back from Mississippi I've been very busy preparing for the conference I'll be speaking at in October. It is going to be so wonderful. I just found out that there is going to be a very special little boy performing for the group during lunch. The piano player is a brother to a little boy with hypoplastic left heart syndrome. I'm so excited that I'm going to have a chance to meet this little boy. I met his father in Philadelphia over a year ago. At that time I had a chance to hear Gene talk with pride about his two boys. Now I'm going to have a chance to meet them and his wife. It will be great to see the whole family under such happy circumstances.

Boston Conference (go to the www.congenitalheartdefect.com calendar for more information on this conference, too)

I've just finished reading an email from Mary Kay Klein, the organizer of the Boston conference for adults with congenital heart defects. Mary Kay has been helping to organize the conference in memory of her daughter Karen. I am so happy that I'm going to have a chance to attend this conference. Now that I see Alex becoming a young man, what these people have to say is going to be even more meaningful to me than it would have been 10 years ago. While I don't know if any of the speakers will be adults with hypoplastic left heart syndrome (the heart defect Alex has), I'm sure many of them will also have complex heart defects similar to Alex's. I'm also certain that the challenges they have faced are ones Alex will also have to face someday.

Most importantly, I will have a chance to hear how some people have survived having a heart defect and even thrived. It is such an inspiration to listen to these people. I met Karen years ago when she visited Austin to see a heart friend she'd made on the Internet. My friend, Jane Hunt, and I had gone to a support group meeting at Brackenridge Children's Hospital and we couldn't wait to meet this young lady. We then took Karen and her friend, Anthony, where they needed to go after the meeting. That gave us a few minutes to talk to them away from the others at the meeting. They acted just like other college kids we knew.

Mary Kay wrote for The Heart of a Mother and her husband Ted is writing for The Heart of a Father. I'll be bringing my autograph copy of my book for Mary Kay to sign. So far I've gathered quite a few signatures. I can't wait to finish The Heart of a Father so I can do likewise with the dads I have a chance to meet.

I hope you all had a great weekend!

Sincerely,

Anna Jaworski

HOF Update

I know I just posted a note about what I'm doing regarding public speaking and Baby Hearts Press, but I thought there might be some of you out there excited to hear about how The Heart of a Father is going.

Having my dad, Bob Daigneault, help with this project has made a world of difference. Because of some technical problems, most of the electronic versions of the essays were lost. I was devastated to discover this. We sent the word out to the dads and some were kind enough to send us what they had. Of course I had printed versions of everything I'd already worked on, but it was starting to look as though I was going to have to retype a lot of pages.

Dad went with me to Fry's to look at scanners. I got one for the business and last week we started scanning in an essay. Dad helped me get started and left. I don't know what I did wrong, but even though I seemed to scan the pages in correctly, when I saved them, something odd happened. I saved each page individually and gave it the author's name and page number. I don't know why the scanner took Page 1 and saved it 5 times in a row -- as pages 1-5.

Realizing how frustrated I was after a long time of fighting with the machine, Daddy came to the house and took it away. I don't know how he worked his magic, but somehow he was able to scan and save Jim Larson's 13-page essay in two PDF documents. They look great! He's already sent them to Jim for updating and revising. We're on our way!

I think what has taken us the longest amount of time to do so far has been housekeeping types of activities. We've been trying to reconnect with all the contributers and many email addresses are no longer any good. We've been trying to clean up our YahooGroup listserv, too. There are people on there we don't know and we're trying to figure out who is who and why they're there. There's the whole issue of who has sent in his permission form and essay and who wants to update what he's sent. All in all, it's very slow going! The good news is: it's going.

Dad made a timeline for us when we started working on this project and so far we're doing what we hoped to be doing. I'm happy to announce that thus far Daddy approves of the developmental editing I'd already done and he is looking forward to doing the line editing. I already did a lot of copy editing when I did the developmental editing, but Daddy is going to make the book more consistent.

At our weekly meeting we took a look at all of the wonderful pictures, videos and music that the dads have sent us thus far. We are so excited about this project! It really is going to be a special eBook experience. Stay tuned for more updates as we continue to work on this very special project. And if you are a contributor and you haven't heard from us, it's because we can't contact you. Please contact me! My email is jaworski@vvm.com. Even though some essays have been accepted for publication, we still want to touch base with everyone and let everyone know what's going on. We appreciate people helping us spread the word!

Sincerely,

Anna Jaworski

A Wedding, A Speech and Toastmaster Friends

Tomorrow morning I will be flying to Mississippi to attend my cousin's wedding. I hope to have some good pictures to post sometime after I get back. My aunt is going to be the photographer for the wedding and I hear she is wonderful.

I hope C.J. and Michael have a beautiful day for their wedding. The weather predictions are not as favorable as we'd like, but then again weathermen (or women) are not necessarily known for their accuracy. My Aunt Terry has wisely decided that a tent would be in order, so I'm sure we'll be covered.

This wedding was an excellent excuse for my grandmother and me to go shopping! Having just been sent home from the hospital days earlier, I really didn't think Grandma would be up for a big shopping excursion, but I should have known better! Six hours after we started out, Grandma's purse was a little lighter and my bunion was screaming at me!

Seriously, we had a lovely lunch and then had a wonderful time finding Grandma the "perfect" dress for the wedding. Leave it to Grandma to not only find ONE perfect dress, but TWO! Now tomorrow she will have the difficult task of deciding which lovely dress she'll wear.


The past several days have been very busy planning for this trip, shopping and working on my speech (oh! and being a mom to two busy boys and homeschooling Alex!). I gave Part II of a three-part speech that I started last week at my local Toastmasters Club, Texas Stars Toastmasters. The three 10-minute speeches will add up to the one 30-minute speech I'll be giving in Miami next month. So far my Toastmaster friends have been awesome. Their advice has been right on and their comments are boosting my confidence in what I've put together. This is making me even more excited about going to the conference!

I really believe everyone should join Toastmasters at some point in his or her life. It has been such a blessing to me to be able to practice my speaking and leadership skills. I also feel that I have made some life-long friends in the process. I think one of the things I like most is that, in my experience, Toastmasters are there -- not only to improve their own abilities -- they are there to help and encourage others. In that spirit, Texas Stars Toastmasters will have their regularly scheduled meeting next week and then a group of them will go to a local restaurant for dinner and an opportunity to help me by listening to my 30-minute speech uninterrupted. I'm even going to bring the dress I plan to wear to the conference to get their feedback.

I am so excited about the opportunity to go to another CHD conference and to meet new CHD parents. I'm thrilled with the way the organizer for this event has worked with me. She has been wonderful about explaining exactly what she wants in me as her speaker. That has made planning so much easier and fun! I will post some pictures of the event on the website when I come back.

That's all for now. I feel lucky to have something wonderful like a wedding to look forward to, a goal to achieve (writing a great speech) and friends along the way to help me get where I need to be. Thanks Texas Stars Toastmasters!

Anna

Grandma

I know this blog is supposed to be about Baby Hearts Press, but everyone needs to know that BHP is a family-owned and run business. Therefore, if something is happening to a dear family member, it will affect the business. That is exactly what happened last week.

Last Wednesday, my grandmother went to the Emergency Room because she was having trouble breathing. She had already been diagnosed with atrial fibrillation and was on Coumadin, so we were already concerned about her. For months she has become increasingly more out of breath, but complaints to her doctor went unheard. Finally, fearing for her life, she called my father and he quickly went to her house to hand deliver her to the ER.

Meanwhile, my husband called down to the ER to let them know Grandma was on her way. We got VERY lucky. There was hardly anyone needing to be seen when she arrived, so we went straight back. I live only a few minutes from the hospital, so I met them there.

It didn't take long for the doctor to determine that Grandma was in congestive heart failure. Because of Alex's heart defect, I knew what that meant and was able to help Grandma anticipate what was coming next. I told her that when Alex's CHF was diagnosed, the first thing they did was put him on lasix. Not surprisingly, they did the same thing to Grandma. Then Grandma, just like Alex, was admitted to the hospital. It was kind of like deja vu.

For six days we watched, worried, prayed and stayed optimistic. Once the lasix started working, Grandma's sense of humor returned. She was the ideal patient. She gave blood without complaint and let them do whatever they felt they needed to do. She was as upbeat as she could be. I was proud to be her granddaughter.

The next major concern with Grandma was damage done to her kidneys because of the agressive lasix therapy. Grandma's kidneys were already starting to have problems and she was already being seen by nephrology, but now things became more critical. There was concern that she might have to go on dialysis. It was a wait-and-see game for a while -- something we parents of children with heart defects know all too well.

Yesterday the good news finally came: Grandma was doing better and could go home! Her kidneys were starting to heal and the doctors felt she would heal better at home. She was relieved, as were Dad and I. We couldn't wait to pack her up and take her where she belonged.

The last week was another good example of how families can pull together during a crisis. Frank was so wonderful about letting me be up there as much as I could. The boys took care of the kitchen and laundry. We all went to visit her one day as a family. I'd like to think that visit really cheered her up. Dad and I tried to manage the schedule so that somebody would be with Grandma at all times except when she was supposed to be sleeping. We had a workshop we had to go to on Saturday and my sister and niece drove all the way from Houston to spend Saturday with Grandma. It really was heartwarming to see how everyone pulled together to help Grandma as much as possible.

I think that all of us were better prepared with what to do because of Alex's stays in the hospital. We know what it's like to have a loved one in the hospital. We now know what to do to be a good advocate for the patient. Dad and I started a journal with information we were being given when we started getting conflicting information from some of the different individuals she was seeing (she was at a teaching hospital -- so she had a huge team of people overseeing her care). By the time Grandma left, everyone, including my sister and niece had taken a turn writing notes in Grandma's journal. I'd like to think that the consistency which we demanded helped her to get better faster.

No one lives forever, but we knew it wasn't Grandma's time to go yet. I'm going to include a picture of her playing pool at my house with the family. Usually she runs circles around everyone. She calls bingo twice a week at two different nursing homes where she volunteers. She belongs to her church's Altar Society. She is faithful about going to church every week -- and with getting her hair done once a week! :-) But she also has something very serious coming up which she didn't want to miss: my cousin is getting married in September. She has to dance at that wedding!

Thanks to all of you who knew what was happening to Grandma and took a moment to say a prayer for her. She's doing great and I might even have a picture to post of her dancing at C.J.'s wedding in the next month.

Anna

Hastings, San Francisco and Miami Conference

Greetings from Central Texas! I am so excited to be home! I have three different things I'd like to share.

Hastings

There is a bookstore in Killeen, Texas called Hastings which my dad visited. He brought copies of my books and asked if they would like to carry them since I am a local author. They very graciously agreed to carry them, so if anyone is looking for My Brother Needs an Operation or The Heart of a Mother in Central Texas, you can get them from that bookstore. They are in the Local Authors section right near the front of the store. Thanks, Hastings!

San Francisco:

We had a lovely week in San Francisco in August. We had a chance to visit with Nancy and J.D. McCain which was wonderful! J.D. is contributing an essay in the Grandfathers' Chapter of The Heart of a Father and we had some time to talk about his contribution over a nice lunch at Swiss Louis Restaurant. J.D. and Nancy McCain are responsible for many of the quilts that have been created for the Congenital Heart Defect Awareness Quilt Project. There will be a Quilt Show in Texas in the fall, so check back here for more information about that in the future!

In S.F. we visited Pier 39 (see pic above) and two different aquariums (see pic above). We also visited the wax museum, a couple of art museums, including the Legion of Honor and we also went to the Maritime Mueseum - which was really neat! The weather was cold (for a Texan - hence the jacket in the pictures), but we had two lovely, sunny days.

Miami Conference:

Things continue to progress regarding the Miami Conference. We might even have the brother of a boy with HLHS performing at the conference. He is a musical genius and has been featured on television and in some Florida newspaper articles. I'm eager to see how that works out.

I've been working on my keynote address and am excited by how it's coming together. It's hard to believe that Alex turned 13 on the eleventh of August. I'm now the mother of two teenagers. Alex wasn't expected to make it to age 5. To see that he's made it to 13 and is going strong is quite an accomplishment.

More to come soon!

Anna

Exciting News!

It's official! Today I received the faxed contract from Pepper Adair and I'll be speaking at the American Heart Association Heart Heroes conference on October 6, 2007. I'm very excited about that. Anyone from the Miami area who is interested in attending this conference, please let me know at jaworski@vvm.com and I will have an invitation sent to you. We need a headcount for the conference because, for one thing, a complimentary copy of The Heart of a Mother will be given to each family registered for the conference. And get this -- the cost of the conference to participants -- free! You can't beat that! There will be a number of excellent speakers discussing relevant topics for congenital heart defect families. Once I have the schedule, I'll post it to my website (www.babyheartspress.com).


(Alex on stage for spelling bee)


(Alex at the cookie walk)

I said I would write about Alex's Harry Potter experience. It was interesting. We went to the mall because Borders had a special extravaganza the whole night long. There was to be a spelling bee, a cookie walk, face painting, etc. Alex was very excited. Things didn't work out completely as planned, but the most important thing was that we got our books and got home by about 12:30. Alex, being much younger and more curious, stayed up until 8:30 a.m. reading the book. I had awakened around 7 a.m. to finish off where I started. I couldn't keep my eyes open past the second chapter. I was amazed to learn that Alex had already finished the book!

Alex was a perfect gentleman. He didn't let any of the information slip, but as soon as I finished reading the book, we hid out in Frank's office with the door closed so we could discuss the details. Frank and Joey finished the book within a couple of days and now we're free to talk about whatever we want to -- except with certain friends who aren't quite as voracious in their reading as the Jaworski family is.

More exciting news: we've planned a trip to San Francisco and are eager to catch up with some other heart family friends we know there. Plus, this is the first time for the boys to visit the city. We're planning on going on the trolley, visiting Alcatraz, walking along the pier, touring the Ghirardelli Chocolate Factory and viewing the Golden Gate Bridge at sunset. We can't wait! Alex is excited about visiting Chinatown where he hopes to find a cool Chinese dragon to add to his collection. The boys are also looking forward to authentic Chinese cuisine.

Last bit of news:

I was finally able to get in touch with the lab which did Alex's last blood draw and . . . 146,000 platelet count! In fact it was so close to normal, that's why they never called or emailed me! I'm so relieved. I don't know why Alex had that extreme dip in his platelet count earlier this year, but I'm hopeful that now his count is normal again, we can decide what the next best course of action for Alex will be. More on that once I have some answers.

Sincerely,

Anna Jaworski

Rick Riordan and Alex

I have been itching to write this blog for days now! Alex and I had an awesome opportunity just recently to meet San Antonio children's author Rick Riordan. He is the author of three childrens' books: The Lightning Thief, The Sea of Monsters, and his most recently published book, The Titan's Curse.

Luckily for Alex, he has many friends who are avid readers, like he is. It was because of Jen, Luke and Gretchen Oliver and Cristy, Kyle and Ryan Wade that we found out Rick Riordan was coming to Round Rock, Texas for a book signing. Alex and I had not heard of this fabulous author yet, but trusting our friends' opinions, we decided to tag along with them to meet him.

It's a good thing we got there early! A busload of children from El Paso also came to Round Rock to meet him, all wearing the typical Camp HalfBlood t-shirts -- bright orange in color! Although there were chairs set up for people to hear Rick Riordan share a reading from his newest book, there were certainly not enough seats for the huge crowd which assembled in Barnes and Noble.

Rick's first two books are out in paperback, and since we hadn't read his books yet, I agreed to buy those and have him autograph them for Alex. While we waited to meet and hear the author, Alex started reading the first book. I quickly learned that I wasn't going to make it out of the bookstore without also purchasing the third book in the five-part series known as Percy Jackson and the Olympians. I'm glad I went back and got the newest book!

Alex breezed through all three books within a couple of days. I've already read the first book, myself. They are awesome books! Now Alex can't wait to read the fourth book -- which Rick Riordan is editing right now. We've checked out his website: www.rickriordan.com -- and this morning I read his blog. He is easily our newest favorite children's author.

I got a picture of Rick Riordan with Alex after he finished autographing our three books, but I took it with my camera phone and so the quality is not top-notch. The memory of listening to this man read from his book and the joy of discovering a new author and favorite new series; however, was thrilling. As soon as I can figure out how to put pictures up with these blogs, I will.

Tomorrow's post should be just as exciting for me to write about. Alex and I have already reserved our copies of the newest Harry Potter book which is due out tonight! We are so excited! Our local bookstore, Borders (formerly Waldenbooks) is having an extravaganza in the mall tonight. I believe it starts at 6 p.m., but we won't get there until swim practice is over for Alex and Joey. I'm sure we'll just eat at the mall so we can take advantage of all the festivities. I'll make sure I take my digital camera tonight so I can capture some of the magic to share with all of you tomorrow.

Until then . . . I hope your day is magical and you discover something amazing today, too.

Sincerely,

Anna

Anna’s July 5th Blog entry

It’s hard to believe that 5 weeks of robotics summer camps are over. Alex did such a great job with his students. It was a terrific learning experience for everyone. I think Alex was most pleased with how well his programming class went. We had found a lot of different resources on the Internet, but one in particular worked really well. The students actually solved several types of mission problems and did a great job! It was interesting to see who picked what robotic system to work with. We actually had two students working with the new robotic system and two working with the older system. Alex was able to clearly explain the advantages of the new system and after working with the different robots, I think the students clearly understood what could be done with each system.

Alex is back in the water. He rejoined the Temple Area Swim Club and he’s now in level 2. He’s really enjoying being in the water with his swimming buddies. I asked him if he wanted to compete at the Junior Olympics this summer, but he decided he wasn’t ready for that yet. I think he would have done fine, since that’s a competition kids attend to establish times, but I am respecting his decision not to go. Having to swim in a 50 meter pool is a bit daunting. I think for his first competition, he’d do better in a 25 yard pool.

Dad and I are meeting regularly to bring things up to speed with Baby Hearts Press. I’m excited that he’s going to help me conclude the editing of The Heart of a Father. I’m still disappointed that I don’t have a few essays I wanted, but I don’t want to put off publishing it any longer. Dad thinks we can have it done by Christmas -- which would be great if we can make it happen.

I’ve started giving more speeches at Toastmasters again. I’m going to give one next week. I haven’t decided what exactly to talk about, but I have a feeling it will be about robotics. I learned a lot when we went to World Robofest and I have some wonderful pictures that I think I could use in a multi-media presentation. Toastmasters usually frowns on those kind of presentations, but I think it might be nice to add some variety to our meeting.

Frank is going to be speaking at Toastmasters next week, too. In addition to that, he’s been asked to attend a seminar for a major pharmaceutical company who he’s worked with in the past. I think he’s going to start doing more presentations for them and I think we’re going to work up some joint speeches to give as well. I got really excited about the idea of doing another heart conference and I’ve already been brainstorming about the speeches I’d like to write/give. I think it will be fun. I took a break from all of that to be a full-time mom/homeschooling mom, but it’s nice for me to have something like this to look forward to.

Being a mother in my position has been a challenge. I’ve been trying to balance being a good mother and wife with being a good advocate for the congenital heart defect world. I have worked on books, articles, websites and speeches to empower the CHD world, yet I have worried about how focusing my attention on that might affect my boys. I don’t want Alex’s heart defect to define who he is -- yet having a huge scar down the center of his chest is not something to be ignored or denied. We can’t pretend he doesn’t have a special heart. So how do I help the CHD world and still give Alex a childhood where he doesn’t feel stigmatized? That has been my challenge. The way I dealt with it for the last few years is to do things quietly, mostly during the wee hours of the night. Now I’m starting to come out of my cocoon. I hope it’s the right thing to do. Like with anything we parents choose to do -- only time will tell if it was the right thing. For now, I’m going with my head and my heart and they tell me that it’s okay to talk about things I’ve learned, share experiences and help to empower others. It feels good to feel more sure about that.

Maybe it’s because Alex is about to turn 13 that I’m realizing it’s okay for me to start letting go of him and doing my own thing. Joey will be 16 soon. My boys are growing up to be fine, young men. I guess it’s time to let them spread their wings a little bit without me hovering over them lest they fall or falter. It sure is a lot harder to watch my boys grow up than it was to grow up myself. I remember yearning to be older and off on my own realizing my dreams and making my own decisions. I’m not ready for the boys to do that quite yet, although Joey is exerting quite a bit of independence with driving the car. It’s amazing to watch him growing up and becoming a man. I feel so honored to be his mother. Now Alex is starting to ask to be taught to drive. I must admit, I’m glad he still has a few years before I have to go through this again! I think I’m a bit less panicked now than I was when Joey first started driving, but I still worry about him being on the road with all the crazy drivers who are out there. How will I handle it when both my sons are out there and I can’t protect them? Being a mother isn’t easy; each phase we go through with our children just brings us new challenges to deal with. Maybe this is why so many mothers pray for their children daily. There’s no way we can hope to do it all; we need God’s help.

October Heart Conference & Recent Happenings

What an awesome week I had! The first week of robotics summer camp is already over. I'm trying to figure out how to put pictures up on my website (http://www.centraltexasacademyforexcellence.com). The kids had such a great time and so did I! Alex is making new friends and really enjoyed working with the kids. All of the kids, regardless of age, did a nice job of being respectful and having nice behavior. That makes for a much nicer learning environment.

One unexpected thing happened this week. I received an email, and later a phone call, from Pepper Adair who is working in Florida with the American Heart Association Heart Heroes program. She contacted me to see if I would be interested in speaking at a conference they are putting together on October 6th. I'm very excited about this prospect!

For the last few years, I haven't been as active as I was in the heart community. For a number of years, I was speaking at a conference or event a year (sometimes more). I spent weeks or even months planning for these speaking engagements, from making all of the travel arrangements to writing and practicing the speeches and then finally going to the event itself. Since I homeschooled my boys, I had the liberty of taking one or the other with me. I would take first one boy to one engagement and then the other boy the next time. Because of this, Joey went to Vancouver with me, while Alex went to Nova Scotia with me. Sometimes I went alone (like for the Mother's Day event in Sacramento) and sometimes the whole family went together (like when we all went to the Ohio Conference before we flew out to Germany). It was a great way for my boys to get to travel with me, meet nice people and help me with Baby Hearts Press' mission.

However, I became concerned that I was allowing "heart defects" to rule my life. I was afraid that I was putting too much attention on that and not enough on living each day to its fullest. I worried that maybe my activities would negatively affect the boys; although, to that point, nothing untoward had happened. So I took a break.

For the last several years I've been so involved in homeschooling the boys, helping Joey with his acting ambitions and his swimming goals, helping Alex with the creation of a robotics team and trying to be an overall good wife and mother, that speaking engagements and attending heart conferences was put on the back burner. Since that time I have taken training to become a stroke and turn judge (for USA Swimming competitions), trained to become a robotics coach (for FIRST LEGO League/FLL) and become Joey's manager for his acting ambitions. Joey has made a couple of movies (mostly UT student films), he's been to a lot of auditions and he's risen to the state level of swimming, even being ranked in the top 1% of swimmers in the state of Texas.

Alex has gone to 5 robotics competitions as a competitor and he's had a nice success rate. The first year we participated, the team made 24th out of 76 teams. We were pleased with the results. The second year, the team made it to the quarterfinals before being beaten. The third year, the team won 1st place in the research portion of the competition! It was very exciting to bring home that LEGO trophy. This last year, the team did the best they've ever done. They won 3rd place in the robotic head-to-head competition and 2nd place overall. Had they won first place, they would have been eligible to go to the international competition in Atlanta. That's their goal for the competition in 2008. Right after FIRST LEGO League, the team extended their robotics tournament season to include Robofest.

Robofest is a totally different robotic competition than FLL. What was exciting about Robofest was that the boys got to make their own missions and they were able to create more than one robot to complete their missions. They won their state competition and then went to the international competition. That was a wonderful learning opportunity for them because they got to see so many robots made out of different kinds of kits and some that were made without the benefit of a prepackaged kit. It also showed the boys how they could make a stationary robot that could still accomplish some interesting missions.

In January of 2006, Joey asked again to go to public school. I decided that it was time to let him make a choice with regard to his place of education and I had already taken him to the college level in many of his subjects. He didn't really believe me when I told him that, but then I scheduled all of us to take the SATs in the springtime. Joey was 14, Alex was 11 and they both did great. Joey had the chance to go to college instead or high school. Because he wanted to be on the high school swim team, he chose to go to high school.

Last week Joey finished his first year of public school. I'm proud of him for doing as well as he did (all As for the year!), despite some anticipated problems. It was the first time for him to have some really difficult teachers to deal with. He learned that sometimes he would have to make changes, but he also learned that when the system just isn't working, sometimes you have be an advocate for yourself and find a different teacher. These are things he needs to be aware of for college anyway, so I guess it's better for him to be learning those things now while I'm here to help him negotiate his way through the maze of paperwork and bureaucracy.

With Joey in public school, Alex's and my homeschool changed dramatically. This last year was really a transition year for us. It was a science-intensive year for Alex. In addition to all of the robotics competitions Alex was preparing for and attending, he participated in Science Bowl, too. This is a special program sponsored by the U.S. Department of Energy. The questions were tough and Alex had to do a lot of studying. We watched movies, took field trips and did a lot of reading together to help him prepare for this competition. We also spent a fair amount of time on math, since that is part of the competition, too. What we discovered at the competition was that the higher you go in the Science Bowl competition, the more math questions -- and more difficult math questions -- there were to answer.

I'll have to write another post later describing what we plan to do in the fall because it's going to be pretty intense; however, I am also planning on working with Baby Hearts Press more this year, too.

Right now I'm making motions to change my business to make it more successful financially and to complete some long-overdue projects. I've hired my father to help me. I know if he's depending on me to do things, I'll get them done. Otherwise it's too easy for me to get distracted with robotics, driving the kids to their different activities, doing laundry, paying bills, etc. and nothing gets done for BHP beyond the everyday answering of emails, keeping up with the websites and processing book orders. Now I'm planning on getting some new material out there and I'm excited about that.

This October conference is another thing for me to be excited about. I have stayed active in Toastmasters and have continued giving speeches and working on improving myself as a speaker, but I haven't been out speaking very much.

I did speak as an expert in the heart community last year at a Federal Court. That was quite an experience! I'll have to write that up for another blog entry. But other than that, I haven't spoken much in the last couple of years to the heart community about the heart community.

I think that the rest of 2007 should prove to be very fun and exciting. In addition to planning for this conference (and it WILL take some planning since I'll be giving a keynote address, doing a few pull-out sessions and taking part on a panel discussion at the very end), I am preparing for a fun trip for the family. In August Frank and I are taking the boys to San Francisco. We're very excited about that. Frank and I went to SF a number of years ago and had a wonderful time. We knew it was a place we wanted to share with our boys someday. That someday is soon approaching and we are eagerly planning some of the sites we will take the boys to and some of the activities we'd like to do.

I hope any of you readers who live in south Florida and would like to attend this conference will contact me. The conference is mostly by invitation, but they will allow some others to attend, too. When more material is available, I'll have information online at my website: http://www.babyheartspress.com.

That concludes this very hectic, yet exciting, week. I'm really enjoying blogging, too. It is a fun way for me to write, share and chronicle what's going on in my life and in Baby Hearts Press.

Have a terrific day!

Anna

Robotics Summer Camps

I am so excited for Alex! Yesterday we started a series of robotics summer camps. His Beginning Droids camp is full (see http://www.centraltexasacademyforexcellence.com for more information about his camps) and he really enjoyed teaching. He also assisted me in teaching Mechanical Engineering 1. Since he had the class last year, he knew all of the answers to my questions and was able to help the students keep up with me. We have a terrific group of boys who are very bright and did very well with their building projects.

Anybody who has a child with a severe heart defect knows that there are certain activities that will be more difficult for their children to do than for children without a heart defect, but when our children are babies, those differences don't seem too great (unless you're having to deal with feeding issues or need oxygen -- or require other out-of-the-ordinary devices). It hasn't been until Alex has started to age that I am becoming more aware of his limitations. We live in Texas and one of those limitations is how a preteen earns money. In Texas it is not uncommon for boys to earn money in the spring and summertime by mowing yards and doing yardwork. While Alex certainly can help out in that regard, staying out in the heat for hours on end is not good for him. I worry about dehydration. He simply doesn't like it. The heat drains his energy (and mine, too!).

That's why it becomes increasingly important for me to help him discover other ways to earn money. Right now he has his sights set on earning enough money to buy a Wii. He has it harder than some kids because I've always had a rule that he has to save half of what he earns for college. That makes earning money for the Wii harder because the more he earns, the more he has to save. Of course in the long run, he'll thank me, but for now, he's not relishing the thought of having to work so hard for his game system.

Last summer Alex and I created a robotics summer camp and Alex really enjoyed it. It was a great way for him to earn money doing something he liked: working with kids and robots. He can certainly earn more money teaching robotics than he can mowing yards right now. He is also learning the value of sharing his talents with others -- and perhaps equally importantly -- and recognizing and cultivating talents and skills in others. I am proud of how well he interacted with the children.

Yesterday Alex was a little apprehensive about his class. His is 12, but I had agreed to let a 13-year-old boy take the class, too. Alex was concerned that the boy wouldn't respect him or that it might be a problem. I talked to the boy's father about it and felt we at least needed to give him a chance. To my delight, yesterday Alex told me how happy he was that that boy was in his class. They really hit it off. The boy is a very good builder and very bright. I'm keeping a close eye on him to see how he interacts with the other boys. Our robotics team is losing one member because he's going to school in the fall. Perhaps this boy will be able to take George's place. We'll see.

The boys will be arriving in less than two hours, so I will need to close for now. If I can figure out how to attach photographs to the blog, then I'll post a picture from yesterday. Keeping up with the Blog has been more fun than I thought it would be!

Anna

Hematology Follow Up

5/24/07

Alex’s hematology visit went even better than I could have anticipated. He still hates having to give blood, but it goes much better when Frank is there with him, too. He’s lucky to have both of us there to help him through this difficult time and I hope that eventually he doesn’t think it’s such a big deal to have to give blood.

The doctor called with his platelet count and it was 113,000! That is so much better than the 59,000 count he had previously. Clearly, Alex must have been getting over an infection. I guess I’m just lucky that he didn’t show other outward signs of suffering from the infection.

Right now we wait and see some more. They want to monitor Alex’s platelet count for another two or three months to see if it gets closer to normal (150,000) or if it goes back down where it was before. That means no catheterization this summer. At least that question is answered. :-)

The other good news was Alex gained 1/4 of an inch in height in the last three weeks and 3 pounds! He is clearly going through a growth spurt. I knew he was just by the amount of food he’s been consuming lately.

More good news: his oxygen saturation level was 82-83. It hasn’t been that high in a long time. So good news all around. I feel much better today than I did before. I guess it’s time to thank God again for all the blessings. It’s easy to forget to do that when times are stressful.

Anna

Welcome to the Baby Hearts Press Blog! This is a way for me to keep in touch with my readers and friends and for me to give people an idea of what it’s like to be the mother of a pre-teen born with hypoplastic left heart syndrome (HLHS) who is post-Fontan. I commonly receive requests from readers and friends to let them know how Alex is doing. Now I have a forum to use for that very purpose.

5/21/07 I am hoping that the next post will be written with a lighter heart. Tonight I am writing with a bit of a heavy heart, although I know that things certainly could be worse. Tomorrow Alex has another appointment with Hematology.

Since Alex’s last cardiology appointment about 7 months ago, we knew that his cardiologist was concerned about his dropping oxygen saturation level (SATs) and that he was considering doing a catheterization on him. It’s been three years since the last one and I guess it’s time, but it isn’t something that Alex or I look forward to. At the last cardiology appointment, to everyone’s surprise, Alex’s SATs were actually higher than the previous visit!

Thus began Alex’s visit to the lab at Scott & White to have blood drawn. Because the first set of results showed an unusually low platelet count, Alex had to give another sample the very next week. That sample showed that Alex had been getting over an infection, but the count was still lower than it should be. That prompted a referral to Hematology and yet another blood draw. The visit to Hematology resulted in more than a blood draw to look at his platelets. They also did a Complete Metabolic Profile (CMP) on his blood. The good thing about this is that things look great -- except for his platelet count. It’s still too low.

Anybody who knows me can guess the next thing I did. It was on Google and MedLinePlus for searches on what could possibly be wrong with Alex. Alex has mild thrombocytopenia (low blood platelet count). His father has pseudothrombocytopenia. We were hoping that maybe Alex had the same condition as his father -- where it looks like there’s a problem with the platelets, but upon closer inspection, everything is fine. Unfortunately, Alex’s condition is not like Frank’s.

The next step for Alex was a visit to the ultrasound lab where they did an ultrasound on his abdomen. I’ve seen many ultrasounds on his heart, but never on his spleen, kidneys or gallbladder. The good news is that most of his organs look good. The bad news is that his spleen is enlarged. His platelets are also enlarged. This is not a good thing. It appears that Alex’s spleen is gobbling up his platelets. Not good.

So tomorrow we go back to Hematology and Alex has to give yet another blood sample. I am sorry for him that he’s having to go through this, but it’s what his cardiologist is requiring before he caths him. I don’t blame him, but I sure wish we could stick with noninvasive tests. No such luck at this point.

I’m hoping that the next Blog entry will be one with good news and that I will feel more joyful in writing it. Still, it feels good to get my feelings off my chest and onto the page. Writing has always been therapeutic for me.

If any of you have had a similar experience and would like to tell me about, please do! You can write to me at jaworski@vvm.com.


Sincerely,

Anna Jaworski
mom to Joey (heart healthy; 15) and Alex (HLHS; 12)
www.babyheartspress.com
www.congenitalheartdefects.com
www.centraltexasacademyforexcellence.com