So, we finally crossed one specialist off the list of many (the cardiologist) just to add another one.
So I brought Sylvia into her normal 4 month check up. Shot day, yuck! Everything has been going wonderful. Had good news from the cardiologist and everything.
Dr. was examining Sylvia, and making sure she was developing in each area as she should be. Well apparently she hasn't been. When the Dr. was trying to line up her toes with her knee they didn't match up the way she had wanted them to. Her right foot had bent in just slightly. It's not as severe as a club foot, however it is still something that needs to be corrected!
This caught me totally off guard. Out of everything going on I didn't think that I would have to deal with these issues! Apparently this issue is connected with her cleft. How? I don't know! Apparently the Dr. says she has to be missing a piece of some chromosome in her body. We haven't done this testing yet.
We did some blood work to rule out some other syndromes, and she doesn't have any of those. At 12 months she would like to do some more blood work to find out what it is that is making all these little flaws. I guess right now it isn't necessary just because we don't really NEED to know. It would just be a piece of mind.
As far as the leg issue goes, we'll be making the wonderful trip back up north! Not sure when but we need to meet with the Pediatric Orthopedist. Chances are she'll be in a brace of some sort but the Dr. seems very confident to believe that it will be corrected by the time she's 2.
I'm so curious to see what this little girl becomes. She sure is strong. I hope she does something amazing with her life. After seeing everything she's been through in her first 4 months of life, I believe she's capable of anything!
Sunday, August 15, 2010
Cardiologist....
So on Tuesday the 10th we went to Marquette (our home away from home) to meet with the pediatric cardiologist. He was such a nice Dr. Probably had to be my favorite so far! You can tell he meets with lots of kiddos and enjoys what he does.
So anyway, the ended up doing an EKG on her heart. Dr. Wolfe sent us up there to make sure that Sylvia wasn't doing any damage to her heart. She works extra hard to just breathe and Dr. was worried over time that it would cause stress on her heart. Turns out everything is perfect!
What a relief. As long as the brain is working and the heart is working, anything else can be fixed. She had a tiny bit of a murmur. He said that 1 out of 6 (6 being the loudest) it was at about a 1. He was even willing to bet she didn't have it every day. So that was good news.
He also did an Echo. There was one little flaw that turned up on that. It was called a PFO. Not really sure what it stands for! He drew me a picture to explain it to me. There's a part in your heart that is suppose to close up and 1 out of 3 people this part doesn't close. It leaves a tiny hole and her's isn't even as bad as a hole. He said her's was more of a flap. Well anyway, he said that had we not done the Echo today we would have never even discovered it. It won't be anything that gives her any problems. So I was happy to hear that it was something very common!
The best part of all was, we don't have to go back to him! Yay! He doesn't think that her breathing extra hard will cause any stress on her heart in the future! :)
So anyway, the ended up doing an EKG on her heart. Dr. Wolfe sent us up there to make sure that Sylvia wasn't doing any damage to her heart. She works extra hard to just breathe and Dr. was worried over time that it would cause stress on her heart. Turns out everything is perfect!
What a relief. As long as the brain is working and the heart is working, anything else can be fixed. She had a tiny bit of a murmur. He said that 1 out of 6 (6 being the loudest) it was at about a 1. He was even willing to bet she didn't have it every day. So that was good news.
He also did an Echo. There was one little flaw that turned up on that. It was called a PFO. Not really sure what it stands for! He drew me a picture to explain it to me. There's a part in your heart that is suppose to close up and 1 out of 3 people this part doesn't close. It leaves a tiny hole and her's isn't even as bad as a hole. He said her's was more of a flap. Well anyway, he said that had we not done the Echo today we would have never even discovered it. It won't be anything that gives her any problems. So I was happy to hear that it was something very common!
The best part of all was, we don't have to go back to him! Yay! He doesn't think that her breathing extra hard will cause any stress on her heart in the future! :)
Tuesday, August 3, 2010
Chaos!
So, after 1 screaming baby, two fighting boys, and an hour and a half later we arrived in Marquette! Today Sylvia had an appointment in the Specialty Clinic at Marquette General. She has been there once before in July.
So we get to the Specialty Clinic and right away they send us down to Audiology for a hearing test. Of course it wouldn't be a perfect appointment unless Miss Sylvia got hungry right in the beginning of it.
The Audiologist had us go into this little room so she could see how her eardrum is moving. So she's shoving this little earplug "looking" thing in her ear and the entire time Sylvia is trying to get away from her and she's saying "if she's jerky we can't complete the test". I'm thinking, well of course she's going to jerk, she's a baby! So she moved us on to the next part of the test. Basically the audiologist was in another room talking into a microphone that would come out of a speaker either on the right or the left side of her. I guess she was suppose to move her head to whichever way the sound was coming from. Well, like I said, she was a hungry little peanut and was crying. So the audiologist wasn't able to complete either part of her test. It was a good effort on her part.
After the audiologist we then went back to the Specialty Clinic. Keep in mind I had both boys with me, plus feeding her, and now pushing my empty stroller. (I remember when I was in the NICU and one of the nurses told me, "you will now have to grow eight arms". Any ideas on how that would be done would be appreciated).
They took us back in the room and weighed her and got her height. She weighs in at 13.6 pounds and I believe she was 25 3/4 of an inch or somewhere right around there. We had to meet with the Social Worker back there and some other lady who I'm still unsure of who she is! The Social Worker (who I'm not really sure how she plays into any of this, but is fabulous anyway) went and found my boys some books and puzzles to try to keep them occupied. I wish she knew my boys better, she would have came back with duct tape! Haha just kidding, I love them.
So they took us into another room where we met with the Cleft team! It was a very specialized team. We met with the plastic surgeon (who we've been meeting with this entire time), Oral surgeon, orthodontists, Ear Nose and throat Doctor, and the Speech Therapist. They had me in the middle of the room while each of them would take turns examining the baby.
As I'm sitting there, I had Ryan and Ben playing on the floor. All I could hear was "noooo benny" "share Ryan" "he hit me" "he talked to me". So I ended up excusing myself from the Drs. chatter and just separated them. I couldn't take it anymore! haha
So pretty much what I got out of this appointment was that Sylvia will have surgery in December. We'll go one more time to the surgeon in November to make sure everything is in order. She will most likely not have to have her lower mandible pushed forward. The oral surgeon would like to know who said that one child's mandible is the right size while the other's isn't. I'd like to agree with him. Her lower jaw has already moved forward a lot from birth, I think!
So then there was the ENT (Ear Nose Throat) who thinks that maybe at some point she'll need tubes in her ears. Which is fine, but she hasn't had any problems with her ears yet. I have a hard time doing this surgery for her if there really hasn't been any concern.
Next week we'll be making the jaunt again. We will be seeing the Cardiologist. Because Sylvi works so hard to breath my doctor just wants to make sure she's not doing any damage to her heart. So far everything has looked wonderful, but she wants to be sure to catch something early rather than later. That's why I love her. This entire time I've felt like she really does care about Sylvia, and she's not just another patient to get in and out for the next one.
Anyway hopefully the next appointment I can find a sitter. That way I can call my next post "Peace and Quiet" LOL....not likely! :)
So we get to the Specialty Clinic and right away they send us down to Audiology for a hearing test. Of course it wouldn't be a perfect appointment unless Miss Sylvia got hungry right in the beginning of it.
The Audiologist had us go into this little room so she could see how her eardrum is moving. So she's shoving this little earplug "looking" thing in her ear and the entire time Sylvia is trying to get away from her and she's saying "if she's jerky we can't complete the test". I'm thinking, well of course she's going to jerk, she's a baby! So she moved us on to the next part of the test. Basically the audiologist was in another room talking into a microphone that would come out of a speaker either on the right or the left side of her. I guess she was suppose to move her head to whichever way the sound was coming from. Well, like I said, she was a hungry little peanut and was crying. So the audiologist wasn't able to complete either part of her test. It was a good effort on her part.
After the audiologist we then went back to the Specialty Clinic. Keep in mind I had both boys with me, plus feeding her, and now pushing my empty stroller. (I remember when I was in the NICU and one of the nurses told me, "you will now have to grow eight arms". Any ideas on how that would be done would be appreciated).
They took us back in the room and weighed her and got her height. She weighs in at 13.6 pounds and I believe she was 25 3/4 of an inch or somewhere right around there. We had to meet with the Social Worker back there and some other lady who I'm still unsure of who she is! The Social Worker (who I'm not really sure how she plays into any of this, but is fabulous anyway) went and found my boys some books and puzzles to try to keep them occupied. I wish she knew my boys better, she would have came back with duct tape! Haha just kidding, I love them.
So they took us into another room where we met with the Cleft team! It was a very specialized team. We met with the plastic surgeon (who we've been meeting with this entire time), Oral surgeon, orthodontists, Ear Nose and throat Doctor, and the Speech Therapist. They had me in the middle of the room while each of them would take turns examining the baby.
As I'm sitting there, I had Ryan and Ben playing on the floor. All I could hear was "noooo benny" "share Ryan" "he hit me" "he talked to me". So I ended up excusing myself from the Drs. chatter and just separated them. I couldn't take it anymore! haha
So pretty much what I got out of this appointment was that Sylvia will have surgery in December. We'll go one more time to the surgeon in November to make sure everything is in order. She will most likely not have to have her lower mandible pushed forward. The oral surgeon would like to know who said that one child's mandible is the right size while the other's isn't. I'd like to agree with him. Her lower jaw has already moved forward a lot from birth, I think!
So then there was the ENT (Ear Nose Throat) who thinks that maybe at some point she'll need tubes in her ears. Which is fine, but she hasn't had any problems with her ears yet. I have a hard time doing this surgery for her if there really hasn't been any concern.
Next week we'll be making the jaunt again. We will be seeing the Cardiologist. Because Sylvi works so hard to breath my doctor just wants to make sure she's not doing any damage to her heart. So far everything has looked wonderful, but she wants to be sure to catch something early rather than later. That's why I love her. This entire time I've felt like she really does care about Sylvia, and she's not just another patient to get in and out for the next one.
Anyway hopefully the next appointment I can find a sitter. That way I can call my next post "Peace and Quiet" LOL....not likely! :)
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