Today was a big day for Joshua, for a couple of reasons... For one thing, after Joshua's appointment on Monday, Dr. Rivera contacted me & told me he had been thinking a lot about Joshua. He told me he wanted to adjust his pacemaker settings in order to allow his heart more rest. The logic makes a lot of sense & he had it adjusted this afternoon. I am excited for this change, it will allow his heart to beat 20 beats less per minute when he's resting! Hello weight gain, hello energy!!! We are very excited about this development & are very hopeful we'll see results! And the other reason it was a big day - we met the infamous Paul Cardell in the flesh!!! We listened to his story, his testimony & his amazing music. Amazing, amazing and some more amazing! I seriously felt like a 12 year old meeting JBiebs. Okay, that sounds weird...what I mean is, I was excited, nervous & emotional (he surely thought I was unstable). Nonetheless, it was really great to meet him, he was such a genuinely nice guy. I was hoping his wife & daughter would be there too. She is a remarkable woman & his daughter is a doll. I highly recommend his CD's & though I have yet to read it, his book..he's an inspiration!
Today was the day. Joshua spent the afternoon at his cardiology appointment & it went well. He was a good boy, a little nervous at first, but very good. So here's what we learned.... Joshua's heart is still doing well. However, he is at a point where we can get the ball rolling on the Fontan (Joshua's next open-heart surgery), if we choose. We have some say in the matter, because he is stable enough that we can do it when it's convenient. I don't know that there is ever a convenient time for open heart surgery...but since it's inevitable, it's nice that we have some say in the matter. We went into the appointment today knowing that the time for surgery is approaching. After more discussion, Jon & I decided to have Joshua's case turned over to the doctors at UCSF for review. If they give us the go-ahead, Joshua will have a cath scheduled some time in the next couple months (probably by the end of the year) & then surgery within six months of the cath. We are very happy to see that Joshua's heart is holding steady. He was using his pacemaker today when he was being examined, which is the first time we've been aware of him using it at all. The doctors had previously discussed having it removed during the Fontan, since it wasn't being used. That's no longer the case & he'll keep it. The pacemaker gives me reassurance. I have grown to like it, so this news is ok in my book. Another concern we've had, as I have mentioned, is his shortness of breath. He gets winded so easily & Dr. Rivera suggested it could be asthma. I am not certain that's the case, but he prescribed a breathing treatment to try on Joshua before activity and/or when he's sick. We are going to give it a shot. I'm really hoping it helps & if it does, it'll be amazing & who knows, maybe we'll choose to wait on the Fontan a bit longer. Our main concern right now is Josh's decreasing activity level...so if this breathing treatment helps, then we are in good shape!!! We feel incredibly blessed to be in this position. We are so grateful that we have flexibility in scheduling & a stable little boy. We'll keep you posted once we hear back from UCSF with their game plan.
Sam is notorious for taking cheap shots on Joshua. He's only a 1 year old, so it's to be expected. Tonight after getting hit upside the head with a toy truck, Joshua said to Sam in a deep voice, "I'm gonna roll you out like play dough, Boy."
Remember when I posted about Joshua's weight gain dilemma a couple of weeks ago? Well, I am happy to say, we've put your tips to good use! Joshua has been eating, eating, eating...every bite, and every sip, is packed with calories! When I posted in desperation, Joshua weighed 27lbs 8oz. I have been conscious of everything I feed him and I weigh him daily. He now weighs, drum roll, please...29lbs 1.5oz!!! He has gained nearly 2lbs!!! I am so excited & feel like we are going to hit the 30lb mark by the end of the month! I am so grateful for all of the great suggestions that were given. I don't feel overwhelmed by the task of growing him anymore. He's going to hit 35lbs like he needs to. I just need to stay the course. In other Joshua news, he needed to have blood work done this week. I didn't post about it because I was feeling sick about having to do it. Blood draws & IVs are the worst, in case you didn't know (but if you're reading this, you probably know). It was tough to watch, but it went as well as it could. Joshua knew what was going on when we entered the lab & didn't put up a fight. I was very surprised that he didn't resist. He gave the man his arm & when the needle entered (on the first poke, phew) he buried his head in my chest & cried. He told me, "momma it hurts me." That's the worst. But he stopped crying as soon as it was over. It really only lasted for about 8 seconds total. I am very grateful that it went so very smoothly. But even 8 seconds sucks when it's your baby suffering. Anyway, now it's over with & he wasn't traumatized. His labs came back looking almost exactly as they did last year. Everything within the normal range, except for the red blood cell count, due to his low oxygen levels. Actually, that figure had slightly improved from last year's reading. Good news! We are about 2 weeks off from his next major appointment. I am feeling some anxiety. I am really not a huge worrier when it comes to Joshua. I definitely worry, but I never freak myself out with awful thoughts. I take his journey one day at a time. I don't want to spend my time worrying when he's healthy because heaven forbid he become seriously ill, I would regret that I didn't simply enjoy the time we had when he was healthy. With that said, Joshua just doesn't look so good lately. He is very blue & very winded when he plays. He plays very hard. When he's just hanging out, he looks just fine, but he isn't one for "just hanging out" and the result is a blue, winded kid. And so I'm worried. We should get a game plan for the Fontan at the appointment. That may mean we are put on the books right away, or it may mean we are told we aiming for Spring. Either way, I will feel better after talking with Dr. Rivera, he's so good at his job, we trust him, we love him. I will keep you posted when we find out more...thanks again for the food suggestions, they are certainly working:)
Tonight as I was saying goodnight to the girls, I heard Joshua repeatedly calling my name. He seemed excited, so I was curious to learn why he needed me so badly. He told me "I takeded care of Sammy for you mom!"...Some how, he got Sammy to sleep, right on the family room floor! About 10 minutes later, I found this...
We have created this blog to tell Joshua's story. Josh was born in 2007 with a congenital heart defect, Hypoplastic Left Heart Syndrome (HLHS - only half of his heart developed) & has undergone 3 open heart surgeries, pacemaker placement as well as surgery to repair his paralyzed diaphragm. He had a very rough beginning, and has hit some bumps along the way but amazes us every day with his ability to live a very active life. Follow us as we try to keep up with him!
forms short sentances never stops talking continues to climb up everything is a peacemaker w/ his sisters weighs 23.5 lbs
at 19 months joshua
loves to swim speaks quite a bit climbs up everything loves to camp tries riding his tricylce, but needs some help
at 18 months Joshua
can catch a ball runs everywhere he goes ever expanding vocabulary climbs like a mountain goat eats anything in sight (like a billy goat) beats up his Dada very coordinated says "what the?" when something surprises him
At 17 months Joshua...
anxiously watches for Semi-trucks as we drive & yells "tractor" when he sees one walks the whole way around the block reminds me he needs his meds hides toys in the toilet (this is bad)
things I've found in the toilet:
a football blocks a full roll of toilet paper mulitple empty rolls a small soccer ball
At 16 months Josh...
says 15-20 words 'Amen', 'Grandma' & 'Doctor' (his newest words) winks roars like a tiger follows simple directions communicates very well with & without words jumps on the trampoline (with adult supervision:)
At 15 months Joshua...
wrestles his big sisters helps clean up (a little anyway:) tries new words and sounds daily isn't as scared leaving mommy's side flirts like crazy makes animal sounds
At 14 months Josh...
weaned from breast milk walks say 10+ words puts 2 words together feeds himself can crawl at lightning speed makes anyone smile 9 teeth (3 are molars)