Okay, not much has happened. Last Monday we had our appointment with Dr. Callanan, the ENT. Dr. Callanan said the results of the sleep study are unremarkable and there is no problems with his adenoids (not sure why they couldn't tell us that over the phone). They did another hearing test which was fine. He still has a little bit of fluid in his one ear, but it is not a problem. The Dr. said his snoring is not problematic. He said we need to return in four months. It felt like another dead end. I would like to find some nutritional explanation for what is going on with Nathan's clubbed fingers which seem to be getting worse, but there is none to be found. He is almost two and still just the two teeth that he got a year ago. I am ready for a diagnosis.
Nathan has his GI appointment on Thursday, for which he was supposed to be 20 pounds. He is still around 18 pounds 13 ounces, so unless by some miracle he puts on a pound in 6 days, the GI dr. is not going to be pleased. We even turned his car seat around (20 pound requirement) after the last GI appt thinking that it would inspire him, but not so much. Anyway, we will keep you posted after appt on Thursday. Mark is taking him. We scheduled a dentist appt for Tuesday, but they cancelled saying they forgot the dentist is on vacation this week. It is resceduled for July 20th.
6.07.2007
nathan's GI
I feel very badly talking about Nathan's bowel movements. Hopefully he won't be too mad at me when he gets big. After four days of not going and not eating, he is back in business and seems to be regulated. Yay! The mirolax seems to working better and more consistently than the prune juice! Anyway-hopefully this will help him put on some pounds.
about me.....I am at such a good place with his appearance, size, two teeth etc and am not self-conscience or paranoid when people look at him. I anticipate that this will not always be the case and I will revisit being angry and upset about it, but am enjoying my freedom right now. I just don't know what makes the difference or how to get back here when I go the other way.
Nathan is talking up a storm and said, "broccoli" and "flower" last night.
about me.....I am at such a good place with his appearance, size, two teeth etc and am not self-conscience or paranoid when people look at him. I anticipate that this will not always be the case and I will revisit being angry and upset about it, but am enjoying my freedom right now. I just don't know what makes the difference or how to get back here when I go the other way.
Nathan is talking up a storm and said, "broccoli" and "flower" last night.
6.01.2007
appointment update
Well, Nathan had four of his five scheduled appts this week, sleep study, PT, teacher and GI.
The sleep study which Mark went to was good. According to Mark, Nathan definitely breathes through his mouth but never actually stopped breathing. We were instructed to call ENT today to get results, but when I called Dr. Callanan's office they said they do not give them until at least 2 weeks and then it has to be a consult in the office. So June 18th we will learn the results of the sleep study.
I took Nathan to the GI appt. It was not our normal nurse practitioner and I don't remember her name. All I know is that I couldn't get over the surprise of having someone else see Nathan and asked the same questions over again. And yes, I did cop a bit of an attitude. Anyway, the appointments are unbelievably frustrating. First of all she pointed out that around his mouth is blue (it's always a new concern) and asked if he has seen a cardiologist. Yes! -"oh okay, well if they said he is fine then I guess there is no problem" Then, Does he have any skin issues? Yes! Has anyone told you he has low muscle tone? Yes!!! Has he been referred for early intervention?? Yes!! Anyway, it is not her fault, she is just doing her job. Then she said that she was not happy with his weight or his height. He weighed 18 pounds 9 ounces and gained only 1/2 inch in four months (I beg to differ about the height) Anyway, she looked so somber and sad when she was checking him out and talking to me. Like she was giving me such bad news or that Nathan is in grave condition or something. I felt like screaming, 'but look at what he is doing, walking and talking and doing all the things an almost two year old is supposed to be doing' I just felt like scooping him up and running out of the office. Why can't we just take him home, enjoy him for who he is and forget about trying to diagnose him. Obviously I know you can't do that but sometimes in your heart it is what you want to do.
Anyway, the pseudo dr. said that we are not out of the woods for a feeding tube. She wants to see him again in four weeks and if he does not weigh 20 pounds, they would consider a feeding tube. I really do not want him to get a feeding tube, although i understand if it is necessary. It seems like such a setback for him plus he seems to have an appetite and is eating enough, he is just not gaining weight which is most likely due to the genetic disorder. So the next four weeks we are supposed to cut out the prune juice for nathan and give him a stool softener instead b/c he needs the protein from the Pediasure. I am determined that he will be 20 pounds at the time of the appt.
Also-Livia and I finally spoke. She said the only news is that Mark and I do not have the same gene change that Nathan had for the Pycnodysostosis. Don't ask me what that means, I am so confused at this point. She is waiting to hear from the National Dysplasia Center in CA and someone in Italy who has researched Pycno. I asked if we needed to go there to see someone, but she said unfortunately not. The x-ray does show teeth, but she is not sure if they are baby teeth or the adult teeth. Now we need to go see a dentist for more x-rays.
I think that is it. If I think of anything else I will keep you posted. It is amazing how Nathan's appearance really bothers me some days and others it does not. Like this week, I could care less. He's funny and playing and loving! This week it is the time and energy we spend on telephone calls and scheduling and appointments and tests and so on. I just think of how much time each week is devoted to appointments and trying to schedule around appts and it makes me crazy
The sleep study which Mark went to was good. According to Mark, Nathan definitely breathes through his mouth but never actually stopped breathing. We were instructed to call ENT today to get results, but when I called Dr. Callanan's office they said they do not give them until at least 2 weeks and then it has to be a consult in the office. So June 18th we will learn the results of the sleep study.
I took Nathan to the GI appt. It was not our normal nurse practitioner and I don't remember her name. All I know is that I couldn't get over the surprise of having someone else see Nathan and asked the same questions over again. And yes, I did cop a bit of an attitude. Anyway, the appointments are unbelievably frustrating. First of all she pointed out that around his mouth is blue (it's always a new concern) and asked if he has seen a cardiologist. Yes! -"oh okay, well if they said he is fine then I guess there is no problem" Then, Does he have any skin issues? Yes! Has anyone told you he has low muscle tone? Yes!!! Has he been referred for early intervention?? Yes!! Anyway, it is not her fault, she is just doing her job. Then she said that she was not happy with his weight or his height. He weighed 18 pounds 9 ounces and gained only 1/2 inch in four months (I beg to differ about the height) Anyway, she looked so somber and sad when she was checking him out and talking to me. Like she was giving me such bad news or that Nathan is in grave condition or something. I felt like screaming, 'but look at what he is doing, walking and talking and doing all the things an almost two year old is supposed to be doing' I just felt like scooping him up and running out of the office. Why can't we just take him home, enjoy him for who he is and forget about trying to diagnose him. Obviously I know you can't do that but sometimes in your heart it is what you want to do.
Anyway, the pseudo dr. said that we are not out of the woods for a feeding tube. She wants to see him again in four weeks and if he does not weigh 20 pounds, they would consider a feeding tube. I really do not want him to get a feeding tube, although i understand if it is necessary. It seems like such a setback for him plus he seems to have an appetite and is eating enough, he is just not gaining weight which is most likely due to the genetic disorder. So the next four weeks we are supposed to cut out the prune juice for nathan and give him a stool softener instead b/c he needs the protein from the Pediasure. I am determined that he will be 20 pounds at the time of the appt.
Also-Livia and I finally spoke. She said the only news is that Mark and I do not have the same gene change that Nathan had for the Pycnodysostosis. Don't ask me what that means, I am so confused at this point. She is waiting to hear from the National Dysplasia Center in CA and someone in Italy who has researched Pycno. I asked if we needed to go there to see someone, but she said unfortunately not. The x-ray does show teeth, but she is not sure if they are baby teeth or the adult teeth. Now we need to go see a dentist for more x-rays.
I think that is it. If I think of anything else I will keep you posted. It is amazing how Nathan's appearance really bothers me some days and others it does not. Like this week, I could care less. He's funny and playing and loving! This week it is the time and energy we spend on telephone calls and scheduling and appointments and tests and so on. I just think of how much time each week is devoted to appointments and trying to schedule around appts and it makes me crazy
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