Bummer

We have been taking Clare's blood pressure readings over the past five weeks. During her last echo, her blood pressures were at a good number. However, since Clare was under sedation at the time, her cardiologist did not think the reading was a reality for Clare in her everyday life. One of our goals since Clare's surgery has been to wean her off her blood pressure medication. Since Clare does not like having her blood pressure taken (especially at the doctor's office), her readings are always high when she is not sedated. So we wanted a more accurate picture of what Clare's blood pressure actually is. Thus we've been taking them at home, in the hopes that a familiar, comfortable, relaxed environment would get the actual reading. Since the advent of the lollipop in our house, taking Clare's blood pressure has been extremely easy!

I spoke with Clare's cardiologist this morning, and unfortunately, her blood pressure is still too high to come off the medication. Clare is scheduled to have another echo in a couple months, so we will just see what her numbers look like then. I am not surprised, but a little disappointed. Selfishly, it would have been nice to get rid of that medication. It is the only one Clare is on that is multiple times a day, so by cutting it out, we would cut out three doses a day. Plus then it would mean Clare doesn't have high blood pressure. Just a bummer....

I was also really hoping to start weaning Clare off her blood pressure meds because, yesterday, she had another medication added to her regimen. (Sorry, Clare, for sharing all this info with everyone!) For a long time, Clare has had issues with passing bowel movements. It is extremely painful for her. She screams and cries until it is through. We were at lunch with friends the other day and Clare was trying to pass one during lunch. She just sat in her highchair and cried. When I explained what was wrong with Clare, my friend, looking at Clare, said, "That is so sad. That makes me so sad." And that summed up my feelings. To see that look on her face, especially since she doesn't understand why it hurts so much, makes me so sad. I don't know what Clare's trouble is (the low muscle tone, maybe?) but I hate to see her in pain like that. Plus I don't want going to the bathroom to be an issue with Clare. I am afraid that if she associates having a bowel movement with intense pain, then there will be a hang-up about it somewhere in her future. I have a close friend who has dealt with the same issues with her son since he was a year old. Now, at a few months shy of turning four, she is having lots of difficulty with potty training. She believes it is from his painful experiences when he was younger. He, in fact, is on the same medication that Clare was just put on. Since we first noticed that this was painful for Clare (pretty much since she stated eating solids), we have tried to get more fiber in her diet to aid her naturally in this way. However, she hates juice, will only tolerate prunes a little bit, and is in love with cheese, eggs, bananas, and milk (all good for her weight gain, but not as good for bowel issues!). She eats a lot of whole grain, high fiber carbs, but it is not enough to help her. And we don't want to cut down on her dairy products because that is vital to her brain development and growth. So we've finally come down to medication. It is a powdered stool softener that we mix in with her milk. Luckily, it is tasteless and clear, so Clare does not even know it is in there. It is still too soon to tell (she just started on it last night), but here's hoping for some good results!