Wednesday, May 30, 2007

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 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!


Thursday, May 24, 2007

Hematology Follow Up


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.

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


Anna Jaworski
mom to Joey (heart healthy; 15) and Alex (HLHS; 12)