Thaddeus Update 49

Hey everyone, just a quick follow up to let you know the result of Thaddeus' evaluation by the Birth to Three folks. They were very sorry to have to come and report back to us that Thaddeus shows almost no signs of delay. They were sorry to tell us that, since they enjoy playing with him so much they were sad that they didn't have an excuse to come back any time soon.  As before, his fine motor skills are doing just fine. He is able to grasp things and throw them. He is able to try and stack things on top of one another. He is a bit behind average in that he isn't walking yet, but that may be simply because he doesn't want to. They are not really concerned with that unless he isn't walking by next school year. They firmly believe that won't be a problem. They also questioned Dede and tested Thaddeus to see if there was any sign of mental developmental delay. They were very pleased in that regard as well. He showed signs of having object permanence. When kids are little, they think that anything they can not see no longer exists. Having object permanence means that the child has learned that just because he can not see the object, it still exists. It sounds fancy but at it really means is that when they covered up a toy, he was smart enough to look under the towel for the toy. He also reaches his hands out to us when he wants to be picked up, (or crawls right over and tries to climb up our legs.) This shows that he is finding ways to communicate his desires, also a sign of mental development. The other day while he was at the babysitters, he used one toy to reach and knock another toy that he wanted off of the coffee table so that he could reach it. hen he tired of that toy, he did it again with another toy. Today he even started saying what sounds a bit like please when he wants something. All of these things point to regular mental development.
We also had his hearing re-tested and he was within norms there as well. (No cold this time around.) The tester thought he might have some fluid in the ears (common while teething which he most certainly is) but Thaddeus wouldn't sit still long enough for her to get the probes in his ears to test that theory. On the plus side, not letting people put things in your ears without playing with them is normal at this age as well. Speaking of teething, he is officially at three teeth, but we can see AT LEAST two more that are just about to burst through the gums. He has also decided that the best way to get those teeth through is to pull off his socks and chew on his toe.
To God be the glory!

Don't forget, if you or someone you know, ever wants to check out some of the old updates, they are all archived at http://thaddeusupdates.blogspot.com/ 

Thaddeus Update 48

Birthdays, crawling and sedation OH MY!  Is this email not displaying correctly? View it in your browser.

Happy Birthday! Thaddeus turned one back on February 10th. He ate a cupcake to celebrate. Well, some of it got inside anyway. When I last left you, we were waiting to hear from some one to re-schedule Thaddeus' echo and circ. Well after about another week and a few contacts with various hospital personnel, we got a call. The scheduling nurse from urology called us and told us that they had two dates open. The dates they had open were on his birthday and on leap day. I asked the nurse if she had talked to cardiology yet and she assured me that they would be there for whatever day was scheduled. I tried to make a joke, and it failed, so I told her that we would go ahead with his birthday and his birthday present could be a clear bill of health. (Relatively speaking anyway.) About a half an hour later she called back to tell us that cardiology couldn't make it on the 10th so we'd have to go with the 29th. So Dede drove down to Milwaukee with Thaddeus on the 29th. Unfortunately when the anesthesiologist saw Thaddeus, he decided that Thaddeus' had too much of a cold to be anesthetized so they canceled both procedures and sent them home. Obviously we were disappointed by this. When Dede got home she called to set up the next appointment. When she got a hold of the cardiology nurse, they set up a time for the echo. When she called urology, she got transferred to several people and eventually told to call back when a certain other lady was in. Later that night our cardiologist called us and left a message saying he was sorry that it got canceled and asking what he could do to help. So I took the opportunity to send him an email and let him know what our experience had been from the start of this whole thing. I also expressed concern because last time it got postponed, it was three months before we were able to get another date. The next day, Dede got a call from urology saying that they could schedule us for Friday the 9th. We jumped at the chance. When the 9th arrived, we were a little concerned because Thaddeus still had a bit of a cough (as he has had most of the winter). We were concerned they might send Dede and Thaddeus home again. When Dede and Thaddeus got to CHW, two anesthetic doctors came to check out Thaddeus to decide if they could go ahead or not. They were concerned about his cough. Dede assured them that he was acting himself and the cough was just kind of an ongoing winter thing. Apparently they paged our cardiologist several times and he encouraged them to just go ahead and do it. In the end, Dede thinks what finally convinced them was just watching Thaddeus crawl around and play happily. (Oh yea, he crawls now! Everywhere! Including over to Jeremiah's and Daryan's Lego creations . . .) They finally decided that they didn't have enough grounds to not do it if he was acting so contented and lively. The big concern was how would Thaddeus come out of sedation. As it turns out, Dede said he woke up, started to 'coo' and waved at the nurses. In fact, they sent us home with 3 days of pain meds for him, and after one dose, we quit giving it to him and he was fine. So far things are healing well as far as we can tell. Yesterday Dede went back down to CHW to talk to the cardiologist about the echocardiagram results. He was able to tell Dede that the results looked fantastic. The heart function is great. So much so in fact that he took Thaddeus off of the blood pressure medication he was on. Thaddeus' blood work was also good. His pulse ox numbers were also stable. (His oxygen saturation is still lower than it would be for a 'normal' kid but they are where they expect them to be.) The only negative that the cardiologist saw was a narrowing of the pulmonary artery. However, he would have been surprised if he had NOT seen that. They will keep an eye on that and may or may not go in and try to widen that. (I think it is basically an angioplasty same as they would use on someone with cholesterol blocking an artery.) In fact, our cardiologist wants to use Thaddeus' growth chart to show how things are supposed to go when you follow the program he is an advocate of. In a sense, he wants to use Thaddeus as a "Poster Child". You can imagine how pleased, and proud, we were to hear that. So looking ahead, we will continue to have regular check ups down in Milwaukee. We will also go to our pediatrician in FDL for all the regular baby visits. We will also keep an eye on Thaddeus to see if we notice any signs that he 'just isn't right' such as lethargy or his color being off. Any of these signs will indicate that it is time for Thaddeus to have the third and final surgery (not counting an eventual transplant). However, if he continues to do as well as he has so far, our cardiologist said we may not see any signs to indicate when Thaddeus needs his next surgery. If that is the case, then we will simply plan on doing it in the summer of 2014. Obviously, plans change, but that is the thinking as of now. SUGAR! YEA!   YEA!