Today Jordan saw the Ear, Nose and Throat specialist, Dr. Afman by a referral from Dr. Burdo-Hartman (pediatric neurodevelopmental specialist). He was looking for any anatomical differences that could be causing her swallowing difficulties. He did a scope that was about the size of spaghetti and went through her nose and down into her throat to see what was going on. He said that from the front her tonsils looked slightly large but nothing to cause him to be concerned. However, when he did the scope, he said that her tonsils are very large in the back and almost touch each other. This could definitely make it more difficult for her to swallow things, but has no impact on the fact that she has a history of aspiration. He recommended that we have her tonsils and adenoids removed. He also wanted to do a scope to see if she had a cleft in her vocal chords which could also have an impact on her swallowing and maybe even cause some aspiration - this type of scope has to be done under anesthesia.
It is amazing how yesterday I was concerned about how I felt helpless and that there was nothing I could do to help her learn to swallow and today the doctor told me that if she was actively involved in feeding therapy, he would not recommend the surgery because of the difficult recovery and the negative impact it could have on her swallowing. I guess God has this whole thing figured out much more than I do and I need to stop feeling like I need to do something and just let Him take care of it all!!
Jordan is scheduled to have surgery on February 22. She will have the scope done and her tonsils and adenoids removed. She will need to stay at DeVos Children's Hospital in intensive care for 24 hours after surgery to monitor her and watch to see that she is not aspirating. The recovery will take about 2 weeks and they said that she will be pretty miserable for most of that time.
Please be praying for us as we prepare for Jordan's surgery as well as the recovery time. Also pray that I am able to let God be in control of Jordan's progress instead of feeling like it is my responsibility. I will continue to do everything I can to help my baby girl, but I need to remember that God is in control and He is caring for her more than I ever can!!
Wednesday, December 9, 2009
Done with Feeding Therapy...for the next year...
Yesterday Jordan had her 4th feeding therapy session at Mary Free Bed since her last swallow study. Since she was only scheduled for 4, I knew she was going to be discharged. She was weighed and measured and has gained almost a pound in the past 2 months!! We met with Jenny and chatted for a bit about her visit with Dr. VanDyke last week and how she had been doing for the past few weeks since we had last seen her. Then we watched the swallow study so I could see how she pools thin liquids and the aspiration as well as how the thick liquids with the straw bottle work better.
Since Jordan has a history of aspirating and has made no progress with her swallowing throughout her on and off therapy for the past year, Jenny said we are going to just wait for a year before doing another swallow study. I was kind of surprised that we were waiting that long. I thought maybe 6 months, but a year seemed so long!!
On the way home I felt so helpless. It is so hard to know that something is wrong with your child and there is nothing we can do right now to make it better. I want so badly to give her food and sit and watch her eat like all other children do!! I want to not have to be so concerned about every little thing that falls on the floor or what she can climb up and reach!! I want to celebrate her Birthday with cake and ice cream and watch her make a mess of it all!! I just want my baby girl to have everything that everyone else has!!!!!
It is at times like these that I am thankful to have a wonderful, level-headed husband who can help me put things into perspective. After telling him that they weren't doing another swallow study for a year, his response was "well, that makes sense, since they think it will be a few years before she is really ready to eat." DUH!! I was so excited last week to hear Dr. VanDyke say that he thought that she might be ready to eat at about 5 years old, yet I am disappointed that at 2 1/2, they want to wait a year to move forward with any feeding evaluations. Derrick helped me realize that continuing to perform swallow studies and having her in feeding therapy isn't necessarily going to do anything until she is older and capable of being taught to swallow (something we have known was necessary for her to eat for a while).
I was also able to realize how much I appreciate the therapists at Mary Free Bed who work with Jordan - both Jenny and Ellen, as well as nurse Jane. These 3 people have been there to answer my questions and to encourage me about Jordan. I feel so supported by these women and the thought of not seeing them for a year is difficult for me. I know Jordan is seen frequently by several different doctors, but there is something special about these 3!! I will miss them tremendously over the next year!!!
Since Jordan has a history of aspirating and has made no progress with her swallowing throughout her on and off therapy for the past year, Jenny said we are going to just wait for a year before doing another swallow study. I was kind of surprised that we were waiting that long. I thought maybe 6 months, but a year seemed so long!!
On the way home I felt so helpless. It is so hard to know that something is wrong with your child and there is nothing we can do right now to make it better. I want so badly to give her food and sit and watch her eat like all other children do!! I want to not have to be so concerned about every little thing that falls on the floor or what she can climb up and reach!! I want to celebrate her Birthday with cake and ice cream and watch her make a mess of it all!! I just want my baby girl to have everything that everyone else has!!!!!
It is at times like these that I am thankful to have a wonderful, level-headed husband who can help me put things into perspective. After telling him that they weren't doing another swallow study for a year, his response was "well, that makes sense, since they think it will be a few years before she is really ready to eat." DUH!! I was so excited last week to hear Dr. VanDyke say that he thought that she might be ready to eat at about 5 years old, yet I am disappointed that at 2 1/2, they want to wait a year to move forward with any feeding evaluations. Derrick helped me realize that continuing to perform swallow studies and having her in feeding therapy isn't necessarily going to do anything until she is older and capable of being taught to swallow (something we have known was necessary for her to eat for a while).
I was also able to realize how much I appreciate the therapists at Mary Free Bed who work with Jordan - both Jenny and Ellen, as well as nurse Jane. These 3 people have been there to answer my questions and to encourage me about Jordan. I feel so supported by these women and the thought of not seeing them for a year is difficult for me. I know Jordan is seen frequently by several different doctors, but there is something special about these 3!! I will miss them tremendously over the next year!!!
Tuesday, December 8, 2009
Visit with Neurologist, Dr. David VanDyke on 12/2
Last week Jordan and I saw Dr. David VanDyke, a neurologist through Ken-O-Sha. He has years of experience and is highly regarded in his field. He had previously evaluated Jordan just over a year ago when she started in the Early On program and indicated that he felt she may have mild cerebral palsy and recommended to our pediatrician that she have an MRI to evaluate that. The MRI came back with that exact diagnosis and she is now classified as CP - class 1. This basically means that she has developmental delays but is able to function quite normally in most ways. I was excited to see what he thought of Jordan's progress and if he had any indications of any additional diagnoses.
After a short time of observation and conversation, Dr. VanDyke mentioned that he felt that what he saw with Jordan was not a result of genetics or an identifiable syndrome but was more likely to do with the mechanical development in utero during the pregnancy. He said that the pathology report of my placenta (which was small, hard, and shriveled when I delivered Jordan at 39 weeks) "made what hair he had stand on end!!" He was amazed that I had no indications that something could be wrong and seemed surprised that nothing was ever noted during the multiple ultrasounds performed throughout my pregnancy. I am not sure that I want to blame the ob/gyn or ultrasound techs, but I wonder if anything could have been done so that Jordan didn't have to face so many challenges so early in her little life. Dr. VanDyke told me that he did not feel that there would be any identifiable connections to a genetic defect or syndrome although he encouraged me to continue to have her evaluated as there is always medical advancements that may benefit her.
Dr. VanDyke also discussed with me her extreme difficulties with swallowing and suggested that we may want to look into an inpatient intensive feeding program when she is ready to learn to eat. He said that the top program he knows of is at John Hopkins and another highly recommended one is Columbus Children's Hospital. I briefly looked online at each of these and am not sure how they differ from Mary Free Bed, but will consider more research when Jordan is ready to eat. He also threw out the "magic" number of 5 - for the age when he projects she may be ready to be taught to swallow. Although this seems like a long way away, I was glad to hear that he saw no reason that she wouldn't make a full recovery and be able to eat fully someday.
Overall, Dr. VanDyke said that we are doing everything we can to provide the help Jordan needs to move as far as possible to her potential. Although she is likely to be just below "normal" - maybe some learning disabilities and lack of coordination and balance, she is going to continue to experience delays and he encouraged us to continue to receive services for her in all areas.
I was very pleased with this appointment and feel encouraged about Jordan's overall development and her future. It reassured me that we are doing the right thing in how we are currently treating her - focusing on speech and communication and allowing physical development to take a back seat for now.
After a short time of observation and conversation, Dr. VanDyke mentioned that he felt that what he saw with Jordan was not a result of genetics or an identifiable syndrome but was more likely to do with the mechanical development in utero during the pregnancy. He said that the pathology report of my placenta (which was small, hard, and shriveled when I delivered Jordan at 39 weeks) "made what hair he had stand on end!!" He was amazed that I had no indications that something could be wrong and seemed surprised that nothing was ever noted during the multiple ultrasounds performed throughout my pregnancy. I am not sure that I want to blame the ob/gyn or ultrasound techs, but I wonder if anything could have been done so that Jordan didn't have to face so many challenges so early in her little life. Dr. VanDyke told me that he did not feel that there would be any identifiable connections to a genetic defect or syndrome although he encouraged me to continue to have her evaluated as there is always medical advancements that may benefit her.
Dr. VanDyke also discussed with me her extreme difficulties with swallowing and suggested that we may want to look into an inpatient intensive feeding program when she is ready to learn to eat. He said that the top program he knows of is at John Hopkins and another highly recommended one is Columbus Children's Hospital. I briefly looked online at each of these and am not sure how they differ from Mary Free Bed, but will consider more research when Jordan is ready to eat. He also threw out the "magic" number of 5 - for the age when he projects she may be ready to be taught to swallow. Although this seems like a long way away, I was glad to hear that he saw no reason that she wouldn't make a full recovery and be able to eat fully someday.
Overall, Dr. VanDyke said that we are doing everything we can to provide the help Jordan needs to move as far as possible to her potential. Although she is likely to be just below "normal" - maybe some learning disabilities and lack of coordination and balance, she is going to continue to experience delays and he encouraged us to continue to receive services for her in all areas.
I was very pleased with this appointment and feel encouraged about Jordan's overall development and her future. It reassured me that we are doing the right thing in how we are currently treating her - focusing on speech and communication and allowing physical development to take a back seat for now.
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