I figure I better update, before its November and I have lost sight of October. (See my previous entry). Anyway, so this month we have had our meeting with the nutritionist, a barium swallow test, a new dietitian (I will explain why we have a nutritionist and a dietitian shortly), a pre-anesthesia appointment, a meeting with the orthopedist and an upcoming pulmonology meeting.
Basically, the nutritionist and I met a couple of times and she suggested that my child is hungry and that I am not feeding him enough. I brought him to her office when he was hungry on purpose. I timed his feeding so that he would take his bottle in front of her so that she could observe his eating. I journaled his food and bottle intake for more than a week. I charted other Escobar kids weight gains from birth to 2. And stupid me, apparently. She took his hunger to mean that I was not feeding him enough, that I am clearly not giving him what he needs and explained that since he is so hungry he is expending energy being hungry which is burning calories. In addition, she explained that feeding tubes are easier and could not understand my resistance to such an idea. Where to begin with this woman. First of all, Owen is not hungry. I am not even going to explain how much he eats because I refuse to feel like I have to explain myself here. He eats, he is not hungry. End of story. She refused to listen to me about how he gets exercise from therapy, he cries the entire time and he has Escobar, which all could contribute to his lack of weight gain. She put my chart in a folder and gave me back my food journal. No other consideration was given to reason. The answer has to be that I don't feed him enough. When I suggested an increase in his formula to water ratio, she said that wasn't going to help. When I suggested duocal, a supplement that bumps up the calories, she said that wouldn't help. And when I explained to her my feelings on feeding tubes and why I did not think that was the best option, she said I seemed a little excitable. I smiled and left. We no longer have appointments with her. The last thing I need are doctors that are making me excited.
The only reasonable thing she did do was order a swallow test for Owen. As I suspected, Owen swallows fine. I may seem a bit "know it all" here, but honestly, Owen is my job right now. I take knowing his situation so seriously that I do know A LOT. I do not know it all. However, when you are unwilling to do the research, or even listen to what I see and do every day with this child, its clear, I know more than you and we will not be continuing our relationship.
In the meantime, Early Intervention cleared us for a dietitian. She came over to the house and you should just hear the things that Owen can eat. Butter or olive oil with every meal. Condensed milk, ice cream, heavy cream, avocado, whipped cream. He may have mashed potatoes with cream and butter. He has a diet from heaven! Seriously, its felt very unnatural to feed him this way and I asked her if I could potentially be setting him up for a heart attack later. She assured me that I wasn't and that babies need much more fat and our goal is to get them to double and triple their weight in the first year. So I relaxed and now Owen is smacking his lips at his rice cereal, chicken, and sweet potatoes topped with melted butter. And he was weighed yesterday, between his 6 month check up and now he has gained 13 ounces, so I am suspecting by next weeks pediatrician appointment, he will have gained a pound!
As for orthopedics, his foot is recurring and that's not good. She suspects its the tethered spine. A long time ago (June) when we had a full-body MRI for Owen, they said he has a borderline tether. In light of the way his foot keeps recurring, she is pretty sure its tethered and it will have to be released in order to continue to fix his feet and for them to remain corrected. This will also have to be done prior to the VEPTR surgery which they think will happen in December of next year. We will get confirmation of the spine at the MRI in Philly, at CHOP on 11/2.
And lastly, we had our pre-anesthesia appointment yesterday for the MRI. Owen has to go under general anesthesia for the MRI and because of the apnea, he will have to be intubated in the OR, they will bring him to the MRI. He will have the study. They will bring him back to the PICU and then we will stay overnight for observation. They have to watch the breathing because of the lungs. So another overnight in Philly. I hate that we have to be away from Gavin and Caleb, but better safe than sorry.
Ok, that's all I got for now. More updates to come!
Showing posts with label pediatric orthopedist. Show all posts
Showing posts with label pediatric orthopedist. Show all posts
Friday, October 22, 2010
Sunday, May 16, 2010
Another week under our belt
I have to say, I am thrilled this week is over. We had lots of appointments and the surgery of course and I am so glad its the weekend. Owens healing so well from surgery. His cut is thin and looks great. Owens testicles are undescended (I am sure one day he will thank me for putting that on the Internet), so they surgically brought one down when they did the hernia as well, so those stitches look great and he seems to have no discomfort.
This week we also had our neurology appointment. I was afraid of this appointment. The pediatric ortho had mentioned that due the fact that Owens feet are asymmetrical, one bending up and one bending down and under, that there may be a problem with his spine. After meeting with the neurologist, I think she thinks they will find something as well. Owen has some dimpling at his joint contractures. Dimpling may indicate that there is a deformity in the spine. So we are going to have a full body MRI to see what is going on. The neurologist was very happy with the sensations in his feet and legs, the fact that he can feel is good. He has good reflexes and he has strength in his legs and feet, as well as in his arms and his grip. All of these things are good for his chances at mobility later in life. I cannot wait to have the MRI and just know what is going on in there. It will also tell us if his brain looks normal. I think his brain is normal because of the way he looks at me and follows me and because I just do. I can't explain how or why I think a 6 week old has a normal brain, but I do. I guess I will definitively know after the MRI.
We had a really good hearing appointment. Owen can hear out of both ears. His nerve is perfectly normal. He has some fluid or possibly a smaller space in his right ear that may be making things a little muffled for him, but she said a little help from the ENT and he will be able to hear us perfectly. It felt great to have a good result.
By Thursday, I felt like we were finally checking things off the long list of things to be corrected. Hernia- check, hearing- check, right testicle-check.
Friday we had OT, PT, Ortho and Pediatrician appointment. PT and OT were great. Owen may not love being stretched, but when he is done, he is long, straight, loose and feels completely different to hold. He bends. I try to do what she does at home, but I just do not acheive the same result. Maybe its the amount of pressure or placement of her hands or just knowing what you are feeling for. Needless to say, I try and hopefully, he is getting something out of it. As for his feet, both are attempting to revert back to what they were, however, we have been trusted to continue to stretch them and wait to cast again. We will have another round of casting, another tenotomy and more braces. Its an ongoing process. Owen hates having his feet stretched and he cries the whole time. As you can imagine, this is not motivation to do it for a million hours a day. I wish there was a way we could explain to him. Instead, it feels like we are just hurting him. I need to toughen up or get thicker skin. If I did not do it and one day he could not use his feet, he would probably ask me why I didn't do it. So we keep on pushing.
We were told we just got approval for our genetic testing for Escobar Syndrome. If any of you have googled Escobar, you may find that what you read is really terrible. There are things about progression and respiratory problems and death. I have met with our genetisist and asked him about these things. I am told, by him, that the progression usually refers to the scoliosis. Some kids with Escobar are born without scoliosis, so it progresses and can cause respiratory issues. Owen was already born with the scoliosis. His lungs are used to breathing like this. Not to say that it could not get worse, however at this time, we are not worried and neither is anyone else. Sometimes the internet is not a friend. The one thing I can say is that with respect to the symptoms that come with Escobar, Owen has the majority of them. I would imagine that we will be told that is what he has. The genetist thinks so and so does the neurologist. We shall find out soon enough.
Caleb is good. The reflux is better sometimes now that he is on the Prilosec. But most importantly in Caleb news... he started smiling! Not smiling when he has gas either, but actual look you in the eye, smile. He smiled at my mom first, but today, he looked at me and gave me a big smile. It was so damn cute. It made me so happy.
Gavin is good too. We got his kindergarten graduation outfit this weekend and he has been riding his bike like a madman. Aunt Beth is in town helping us, so he is making her play all different types of games with him and she is indulging him for now.
Next week we will make appointments for the MRI and the eye doc and we have thyroid testing, OT, PT, ortho and our early intervention PT evaluation.
Hope everyone has a great week!
This week we also had our neurology appointment. I was afraid of this appointment. The pediatric ortho had mentioned that due the fact that Owens feet are asymmetrical, one bending up and one bending down and under, that there may be a problem with his spine. After meeting with the neurologist, I think she thinks they will find something as well. Owen has some dimpling at his joint contractures. Dimpling may indicate that there is a deformity in the spine. So we are going to have a full body MRI to see what is going on. The neurologist was very happy with the sensations in his feet and legs, the fact that he can feel is good. He has good reflexes and he has strength in his legs and feet, as well as in his arms and his grip. All of these things are good for his chances at mobility later in life. I cannot wait to have the MRI and just know what is going on in there. It will also tell us if his brain looks normal. I think his brain is normal because of the way he looks at me and follows me and because I just do. I can't explain how or why I think a 6 week old has a normal brain, but I do. I guess I will definitively know after the MRI.
We had a really good hearing appointment. Owen can hear out of both ears. His nerve is perfectly normal. He has some fluid or possibly a smaller space in his right ear that may be making things a little muffled for him, but she said a little help from the ENT and he will be able to hear us perfectly. It felt great to have a good result.
By Thursday, I felt like we were finally checking things off the long list of things to be corrected. Hernia- check, hearing- check, right testicle-check.
Friday we had OT, PT, Ortho and Pediatrician appointment. PT and OT were great. Owen may not love being stretched, but when he is done, he is long, straight, loose and feels completely different to hold. He bends. I try to do what she does at home, but I just do not acheive the same result. Maybe its the amount of pressure or placement of her hands or just knowing what you are feeling for. Needless to say, I try and hopefully, he is getting something out of it. As for his feet, both are attempting to revert back to what they were, however, we have been trusted to continue to stretch them and wait to cast again. We will have another round of casting, another tenotomy and more braces. Its an ongoing process. Owen hates having his feet stretched and he cries the whole time. As you can imagine, this is not motivation to do it for a million hours a day. I wish there was a way we could explain to him. Instead, it feels like we are just hurting him. I need to toughen up or get thicker skin. If I did not do it and one day he could not use his feet, he would probably ask me why I didn't do it. So we keep on pushing.
We were told we just got approval for our genetic testing for Escobar Syndrome. If any of you have googled Escobar, you may find that what you read is really terrible. There are things about progression and respiratory problems and death. I have met with our genetisist and asked him about these things. I am told, by him, that the progression usually refers to the scoliosis. Some kids with Escobar are born without scoliosis, so it progresses and can cause respiratory issues. Owen was already born with the scoliosis. His lungs are used to breathing like this. Not to say that it could not get worse, however at this time, we are not worried and neither is anyone else. Sometimes the internet is not a friend. The one thing I can say is that with respect to the symptoms that come with Escobar, Owen has the majority of them. I would imagine that we will be told that is what he has. The genetist thinks so and so does the neurologist. We shall find out soon enough.
Caleb is good. The reflux is better sometimes now that he is on the Prilosec. But most importantly in Caleb news... he started smiling! Not smiling when he has gas either, but actual look you in the eye, smile. He smiled at my mom first, but today, he looked at me and gave me a big smile. It was so damn cute. It made me so happy.
Gavin is good too. We got his kindergarten graduation outfit this weekend and he has been riding his bike like a madman. Aunt Beth is in town helping us, so he is making her play all different types of games with him and she is indulging him for now.
Next week we will make appointments for the MRI and the eye doc and we have thyroid testing, OT, PT, ortho and our early intervention PT evaluation.
Hope everyone has a great week!
Tuesday, February 16, 2010
What I now know about Clubfoot
We got our in-utero diagnosis of baby A having a clubfoot for the first time on December 3, 2009. After all we had been through with the miscarriages and then the beginning of this pregnancy with baby B having less fluid and a smaller sac and no one expecting him to make it really (except me- I just knew he would) I was dying to get through our level II ultrasound with no problems. Ha. I asked 200 questions during that ultrasound. I was anxious to know the sex of the babies, but moreso I was anxious to know if everyones brain looked alright and their kidneys and their stomachs. And all of those were fine. Then the radiologist came in and I thought we were done. I will never forget the feeling when he turned and said "we think there is something you should know." Then he told us that he thought baby A had a clubfoot and that it could potentially be related to other genetic defects, like Down Syndrome or Spina bifida. I tried so hard not to cry. But by the time I was waiting for the lady to make my follow up appointment, I was in tears. I did not want to tell anyone and I just wanted the whole thing to go away. It did not help that we could not get a good view of baby A's heart so we had no idea if there were other genetic defects or not.
The following three weeks went by in a blur. It was getting close to Christmas and we had last minute things to do. I refused to speak with a genetic counselor. I had previously done that when we received genetic testing and it just scared me. We weren't going to terminate and I have a sister with Downs so I just wanted to concentrate on Christmas and making life as happy as I could for Gavin and for us.
Our follow-up appointment was December 24, 2009. I expected to hear that his foot was still affected and it was. The radiologist was cold and almost argumentative with Nick who is never really argumentative with anyone. The radiologist walked in and all he said was, yep, at your last appointment we told you your baby might have a clubfoot and I am telling you now, he definitely does. Nick was asking what made the diagnosis definitive and what made this appointment different than the last and the radiologist kept replying that now he definitely has a clubfoot. All he wanted to know was how they knew for sure now and did not know for sure 3 weeks prior. Needless to say, I wanted out of there fast. We were told the baby would need to have a fetal echocardiogram and it just so happened that the pediatric cardiologist that we were being referred to could see us that day. He did and both of the babies hearts looked great and normal. What a sigh of relief on Christmas eve!
Once Christmas was over, I could begin my frantic research about clubfoot. I first spoke with moms on the clubfoot support board on babycenter.com. I was told about a Yahoo group called nosrugeryforclubfoot, which I joined as well. Immediately, I found that moms and dads of children with clubfoot are so supportive. It made me feel better immediately and I was able to ask questions and get an idea of where to begin. I was informed that the current method of treatment was started by Dr. Ignacio Ponseti in Iowa and it consists of a series of casts that basically adjusts the babys foot a little a time until a satisfactory level of correction has been reached. These casts are done over a 9-12 week period and thereafter the childs feet are immediately placed in braces to make sure that the correction stays and a relapse does not occur. The braces are worn for 3-4 months for 23 hours per day and thereafter the baby is weened off the braces during his awake hours but will continue to wear the brace during sleep until 3-4 or potentially 5.
The cause of clubfoot is not really known although it is thought to be due to genetics or the environment. I initially thought that the environment meant occurrences that happened outside of the pregnancy- like taking medication or having had a drink prior to knowing I was pregnant, since both of these things took place and I am having a child with clubfoot. However, I have since been told by at least one pediatric orthopedist that environment refers to the womb and whether or not the baby has space or is pressed up against the mother's uterus. I have also learned that in boys that have one clubbed foot or unilateral clubfoot with no other genetic markers, the cause is usually not genetics. However bilateral clubfoot and clubfoot in girls more often means that it stems from genetics.
I learned that over the history of treatment for clubfoot there have been many trends. From casting to surgery. Dr. Ponseti is not the first doctor to cast. However, he is the first to cast in this method with this series of casts. Current trends seek to avoid surgery as much as possible and if necessary, parents hope only for an in-office tenotomy with no general anethesia. We hope the same.
Our first appointment with who we hope to be our pediatric orthopedist is Tuesday March 2. We will be attending our meet and greet with the doctor as well as seeing the clubfoot clinic at Hospital for Joint Disease in NYC. We will see all different stages of casting and braces on many different children and have the opportunity to meet and speak with the parents of these kids. I think it will be a learning experience and hopefully will ease some of our fears regarding what is coming. I will keep you posted!
The following three weeks went by in a blur. It was getting close to Christmas and we had last minute things to do. I refused to speak with a genetic counselor. I had previously done that when we received genetic testing and it just scared me. We weren't going to terminate and I have a sister with Downs so I just wanted to concentrate on Christmas and making life as happy as I could for Gavin and for us.
Our follow-up appointment was December 24, 2009. I expected to hear that his foot was still affected and it was. The radiologist was cold and almost argumentative with Nick who is never really argumentative with anyone. The radiologist walked in and all he said was, yep, at your last appointment we told you your baby might have a clubfoot and I am telling you now, he definitely does. Nick was asking what made the diagnosis definitive and what made this appointment different than the last and the radiologist kept replying that now he definitely has a clubfoot. All he wanted to know was how they knew for sure now and did not know for sure 3 weeks prior. Needless to say, I wanted out of there fast. We were told the baby would need to have a fetal echocardiogram and it just so happened that the pediatric cardiologist that we were being referred to could see us that day. He did and both of the babies hearts looked great and normal. What a sigh of relief on Christmas eve!
Once Christmas was over, I could begin my frantic research about clubfoot. I first spoke with moms on the clubfoot support board on babycenter.com. I was told about a Yahoo group called nosrugeryforclubfoot, which I joined as well. Immediately, I found that moms and dads of children with clubfoot are so supportive. It made me feel better immediately and I was able to ask questions and get an idea of where to begin. I was informed that the current method of treatment was started by Dr. Ignacio Ponseti in Iowa and it consists of a series of casts that basically adjusts the babys foot a little a time until a satisfactory level of correction has been reached. These casts are done over a 9-12 week period and thereafter the childs feet are immediately placed in braces to make sure that the correction stays and a relapse does not occur. The braces are worn for 3-4 months for 23 hours per day and thereafter the baby is weened off the braces during his awake hours but will continue to wear the brace during sleep until 3-4 or potentially 5.
The cause of clubfoot is not really known although it is thought to be due to genetics or the environment. I initially thought that the environment meant occurrences that happened outside of the pregnancy- like taking medication or having had a drink prior to knowing I was pregnant, since both of these things took place and I am having a child with clubfoot. However, I have since been told by at least one pediatric orthopedist that environment refers to the womb and whether or not the baby has space or is pressed up against the mother's uterus. I have also learned that in boys that have one clubbed foot or unilateral clubfoot with no other genetic markers, the cause is usually not genetics. However bilateral clubfoot and clubfoot in girls more often means that it stems from genetics.
I learned that over the history of treatment for clubfoot there have been many trends. From casting to surgery. Dr. Ponseti is not the first doctor to cast. However, he is the first to cast in this method with this series of casts. Current trends seek to avoid surgery as much as possible and if necessary, parents hope only for an in-office tenotomy with no general anethesia. We hope the same.
Our first appointment with who we hope to be our pediatric orthopedist is Tuesday March 2. We will be attending our meet and greet with the doctor as well as seeing the clubfoot clinic at Hospital for Joint Disease in NYC. We will see all different stages of casting and braces on many different children and have the opportunity to meet and speak with the parents of these kids. I think it will be a learning experience and hopefully will ease some of our fears regarding what is coming. I will keep you posted!
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