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