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.
Tuesday, November 10, 2009
Multidiciplinary Neurodevelopmental Evaluation
Yesterday, Jordan and I headed to the Gerber Center at the Helen DeVos Children's Hospital for the evaluation she has every 6 months. I accidentally thought the appointment was on October 9th...but found out when we got there that it was November 9th...so my list of questions had grown even longer! These appointments are LONG - usually about 4 hours!! Jordan held up great through the whole thing and did well with all aspects of the evaluation.
First we were seen by the social worker and we discussed insurance, social security disability income, and overall family life.
Next we saw Melissa the LPN who updated her chart and checked her weight and height. Jordan weighed in at 21lbs 15oz and 31 7/8in in length.
The first team that came in was Jane the speech path and Cyndi the dietitian. Jane was quite pleased with Jordan's communication progress and encouraged me to work on more "b" words since she has quite a few and maybe even try some "p" words. She played with Jordan for quite a while and said that her imitation was good and that we should shoot for 1 new word a week. The dietitian was concerned that Jordan wasn't gaining weight quite as fast as they would like and that her length to weight ratio had dropped off from 25% to 10%. I explained that she would occasionally miss her late-night feeding because it would get too late and I would go to bed. Cyndi felt that Jordan has become quite a bit more active since we last calculated her caloric intake and that since she was now walking (running) around all day, we needed to increase her calories. We now have a new mixture of Pediasure and Boost to use and we increased her feedings to 160 ml/feeding with a total of 1005 calories per day. She also wants me to change her feeding schedule so that Jordan eats every 3 hours - this requires me to adjust her nap so that her feedings take priority over her natural sleep schedule - so now instead of taking her nap around 1, I have to keep her awake for a 2pm feeding and then put her down around 2:30. This is going to take some adjustments on my part as well as hers!! She also wants me to take Jordan into the peds office for a weight/height check every 2 months so we can monitor her growth. The goal is to keep her between 25-50%.
The next team to come in was Beth the physical therapist and Nora the occupational therapist. Beth felt that Jordan was doing well and that since she was so active, she would continue to develop her gross motor skills. Nora thought that Jordan's thumb splints did help to stabilize her thumbs quite well but that the right one needed to be re-fit because it was creating pressure points. She also thought that Jordan could benefit from thenar supports in the right thumb to stabilize it even better. Nora also encouraged me to work with Jordan on coloring with crayons and digging through a container of beans to find little toys to increase her fine motor skills.
Then Melissa came back in to give Jordan her hearing test. The left tested fine, but because her right ear is so extremely small, she had a hard time getting the plug to stay in. Finally, she just decided to skip it for this time. Jordan has had 3 hearing tests (not counting the ones when she was born) and has never been able to have the right ear tested. I'm hoping that the next time she has it done, we can get an accurate result.
Next, the NP, Jeanie came in to see Jordan. I discussed with her most of the questions I had regarding her overall health, development, and diagnosis. She did an evaluation of Jordan and everything looked good. One of the things we discussed was how Jordan is fairly strong, yet considered low tone and how her reflexes are also delayed. One of the reflexes that is normally gone at around 8-9 months, Jordan still has. These are all signs of the mild cerebral palsy and reasons that she still has difficulty with balance and coordination. Jeanie also recommended that during the dry winter months we use a cool mist humidifier in Jordan's room to keep her airways moist.
Finally, Dr. Burdo-Hartman the pediatric neurodevelopmental specialist came in to answer the questions I had discussed with Jeanie and to evaluate Jordan's progress. She said that she did not feel it was necessary to test Jordan's growth hormone because she had not stopped growing, but was just on a delayed growth curve. This was also why she didn't feel we would benefit from testing Jordan's bone age. She agreed that Jordan's eyes did have dark circles and since her sleep patterns were normal they wondered if there could be some allergies affecting her so we are starting her on Zyrtec to see if it helps. Since we are still no closer to any additional diagnosis but there is still a sense that something beyond the CP could be affecting her, she is referring her to be evaluated by a neurologist. She also wants to make sure that Jordan is evaluated by the geneticist that will be replacing Dr. Toriello next year. The most challenging question was what to do about Jordan screaming during our mealtimes because she wants to eat. Dr. Burdo-Hartman recommended that we give her a sucker that she can have during those times as a replacement to eating. (more on that below)
Overall, this was a good appointment. I feel like I got answers to my questions and a good plan for the next few months! I am looking forward to seeing how Jordan continues to grow and develop and to understand her even better!!!
I was very concerned about the idea of giving Jordan a sucker because it would create so much saliva and she would gag and cough. I called her feeding therapist, Jenny and she agreed that we need to find an alternative option for her. The thickened water in the straw bottle works so well because it has no flavor and doesn't create excess saliva but also because it pushes the liquid to the back of her mouth and she knows to swallow it. By using a sucker, Jordan would have tons of saliva she wouldn't know what to do with and it would be likely to pool and drip down her throat and she could aspirate it. Jenny suggested we try the thickened water popsicle we had used this summer for fun. I made one and we used it during dinner tonight - Jordan sat in her seat with her popsicle and bowl with a spoon and quietly enjoyed her treat while we had dinner!! I think we found the answer we have been looking for!!! I will be making a full batch of popsicles in the morning!!!
First we were seen by the social worker and we discussed insurance, social security disability income, and overall family life.
Next we saw Melissa the LPN who updated her chart and checked her weight and height. Jordan weighed in at 21lbs 15oz and 31 7/8in in length.
The first team that came in was Jane the speech path and Cyndi the dietitian. Jane was quite pleased with Jordan's communication progress and encouraged me to work on more "b" words since she has quite a few and maybe even try some "p" words. She played with Jordan for quite a while and said that her imitation was good and that we should shoot for 1 new word a week. The dietitian was concerned that Jordan wasn't gaining weight quite as fast as they would like and that her length to weight ratio had dropped off from 25% to 10%. I explained that she would occasionally miss her late-night feeding because it would get too late and I would go to bed. Cyndi felt that Jordan has become quite a bit more active since we last calculated her caloric intake and that since she was now walking (running) around all day, we needed to increase her calories. We now have a new mixture of Pediasure and Boost to use and we increased her feedings to 160 ml/feeding with a total of 1005 calories per day. She also wants me to change her feeding schedule so that Jordan eats every 3 hours - this requires me to adjust her nap so that her feedings take priority over her natural sleep schedule - so now instead of taking her nap around 1, I have to keep her awake for a 2pm feeding and then put her down around 2:30. This is going to take some adjustments on my part as well as hers!! She also wants me to take Jordan into the peds office for a weight/height check every 2 months so we can monitor her growth. The goal is to keep her between 25-50%.
The next team to come in was Beth the physical therapist and Nora the occupational therapist. Beth felt that Jordan was doing well and that since she was so active, she would continue to develop her gross motor skills. Nora thought that Jordan's thumb splints did help to stabilize her thumbs quite well but that the right one needed to be re-fit because it was creating pressure points. She also thought that Jordan could benefit from thenar supports in the right thumb to stabilize it even better. Nora also encouraged me to work with Jordan on coloring with crayons and digging through a container of beans to find little toys to increase her fine motor skills.
Then Melissa came back in to give Jordan her hearing test. The left tested fine, but because her right ear is so extremely small, she had a hard time getting the plug to stay in. Finally, she just decided to skip it for this time. Jordan has had 3 hearing tests (not counting the ones when she was born) and has never been able to have the right ear tested. I'm hoping that the next time she has it done, we can get an accurate result.
Next, the NP, Jeanie came in to see Jordan. I discussed with her most of the questions I had regarding her overall health, development, and diagnosis. She did an evaluation of Jordan and everything looked good. One of the things we discussed was how Jordan is fairly strong, yet considered low tone and how her reflexes are also delayed. One of the reflexes that is normally gone at around 8-9 months, Jordan still has. These are all signs of the mild cerebral palsy and reasons that she still has difficulty with balance and coordination. Jeanie also recommended that during the dry winter months we use a cool mist humidifier in Jordan's room to keep her airways moist.
Finally, Dr. Burdo-Hartman the pediatric neurodevelopmental specialist came in to answer the questions I had discussed with Jeanie and to evaluate Jordan's progress. She said that she did not feel it was necessary to test Jordan's growth hormone because she had not stopped growing, but was just on a delayed growth curve. This was also why she didn't feel we would benefit from testing Jordan's bone age. She agreed that Jordan's eyes did have dark circles and since her sleep patterns were normal they wondered if there could be some allergies affecting her so we are starting her on Zyrtec to see if it helps. Since we are still no closer to any additional diagnosis but there is still a sense that something beyond the CP could be affecting her, she is referring her to be evaluated by a neurologist. She also wants to make sure that Jordan is evaluated by the geneticist that will be replacing Dr. Toriello next year. The most challenging question was what to do about Jordan screaming during our mealtimes because she wants to eat. Dr. Burdo-Hartman recommended that we give her a sucker that she can have during those times as a replacement to eating. (more on that below)
Overall, this was a good appointment. I feel like I got answers to my questions and a good plan for the next few months! I am looking forward to seeing how Jordan continues to grow and develop and to understand her even better!!!
I was very concerned about the idea of giving Jordan a sucker because it would create so much saliva and she would gag and cough. I called her feeding therapist, Jenny and she agreed that we need to find an alternative option for her. The thickened water in the straw bottle works so well because it has no flavor and doesn't create excess saliva but also because it pushes the liquid to the back of her mouth and she knows to swallow it. By using a sucker, Jordan would have tons of saliva she wouldn't know what to do with and it would be likely to pool and drip down her throat and she could aspirate it. Jenny suggested we try the thickened water popsicle we had used this summer for fun. I made one and we used it during dinner tonight - Jordan sat in her seat with her popsicle and bowl with a spoon and quietly enjoyed her treat while we had dinner!! I think we found the answer we have been looking for!!! I will be making a full batch of popsicles in the morning!!!
Thursday, October 22, 2009
Has it really been this long?!?!?!?!?
I really feel like I have gotten too busy this fall! This blog is, unfortunately, one of the things that has been left undone. We have had many things happen with Jordan over the past few months so I'm just going to briefly summarize what's going on.
Jordan has had a few months off of feeding therapy. We are still giving her thickened water through her squeeze bottle. She is fiercely independent and MUST hold it herself but is doing very well at taking small sips. She only takes a little bit during her 'meals' and occasional sips when I'm getting something out of the fridge and sees it there. Jordan had a swallow study last month and Jenny said that it was her best so far...but she is not ready for oral feedings :( We are going to start 4 sessions (once a week) for some experimental things she wants to try but not necessarily with feeding goals at this point.
I think the most difficult part is the fact that we are unable to feed her anything! Jordan is getting old enough that she wants to do what we do and eating is no exception. Mealtimes have been increasingly difficult as she used to spend it in her portacrib, and then as she started walking, she would run around and play, but now she wants to sit with us. If we put her in her high chair with toys and plastic food, she normally just screams. If we put her at the table in a booster with her plastic food, she is ready to get down within a few minutes. What we usually end up doing is having her running around playing when we start and she will go sit on Derrick's lap for a few minutes and then get down and come over to me and want up on my lap - this continues back and forth throughout the meal. When she is on our lap, we need to move our food away because she tries to grab at it and put it in her mouth. This has created a very difficult mealtime experience for everyone. Mak just wants to be able to have a normal conversation with us but we are constantly interrupted by her screams or having to talk to her. Conner has a hard time understanding why Jordan can run around but he has to sit at the table and eat. Please pray that Jordan can come to an understanding that she is unable to eat because it's not safe and yet can enjoy just sitting with our family in her high chair or booster at the table during mealtimes.
Physically, Jordan has been doing great!!! She seems to be growing!! She is still wearing some 12 month clothes but is mostly into 18 month. Her feet finally started growing too!! She spent over a year in a size 2 but last spring moved into a size 3 and this fall is already into a size 4!! I even went up to a size 5 when buying her winter boots to make sure that they are big enough if she keeps growing! She has learned to jump and loves to jump around to music or just for fun! That is a physical skill that is more advanced than her other gross motor skills so it is exciting to see!!
Jordan continues to receive services through Early On and Suzanne is her new therapist. She comes to our house once a week and provides an hour of speech, physical, and occupational therapy. Since she is a speech therapist, Jordan has received a large amount of focus on her speech and seems to be improving quite a bit. Derrick and I also attend a class based on the book "It Takes Two To Talk" every Monday night and that teaches us how to work more effectively with Jordan on two way communication. It has helped both of us to feel more aware of what we can be doing to encourage her to not only speak, but communicate through gestures or other means of communication. She is using a few words with encouragement but is still very rarely using independent language. We continue to work with her daily and hope that soon she will be talking up a storm!!!
I know that there is so much more that I could write about, but for now this will do. I hope to try to keep this updated more frequently for those of you who follow her progress on here.
Jordan has had a few months off of feeding therapy. We are still giving her thickened water through her squeeze bottle. She is fiercely independent and MUST hold it herself but is doing very well at taking small sips. She only takes a little bit during her 'meals' and occasional sips when I'm getting something out of the fridge and sees it there. Jordan had a swallow study last month and Jenny said that it was her best so far...but she is not ready for oral feedings :( We are going to start 4 sessions (once a week) for some experimental things she wants to try but not necessarily with feeding goals at this point.
I think the most difficult part is the fact that we are unable to feed her anything! Jordan is getting old enough that she wants to do what we do and eating is no exception. Mealtimes have been increasingly difficult as she used to spend it in her portacrib, and then as she started walking, she would run around and play, but now she wants to sit with us. If we put her in her high chair with toys and plastic food, she normally just screams. If we put her at the table in a booster with her plastic food, she is ready to get down within a few minutes. What we usually end up doing is having her running around playing when we start and she will go sit on Derrick's lap for a few minutes and then get down and come over to me and want up on my lap - this continues back and forth throughout the meal. When she is on our lap, we need to move our food away because she tries to grab at it and put it in her mouth. This has created a very difficult mealtime experience for everyone. Mak just wants to be able to have a normal conversation with us but we are constantly interrupted by her screams or having to talk to her. Conner has a hard time understanding why Jordan can run around but he has to sit at the table and eat. Please pray that Jordan can come to an understanding that she is unable to eat because it's not safe and yet can enjoy just sitting with our family in her high chair or booster at the table during mealtimes.
Physically, Jordan has been doing great!!! She seems to be growing!! She is still wearing some 12 month clothes but is mostly into 18 month. Her feet finally started growing too!! She spent over a year in a size 2 but last spring moved into a size 3 and this fall is already into a size 4!! I even went up to a size 5 when buying her winter boots to make sure that they are big enough if she keeps growing! She has learned to jump and loves to jump around to music or just for fun! That is a physical skill that is more advanced than her other gross motor skills so it is exciting to see!!
Jordan continues to receive services through Early On and Suzanne is her new therapist. She comes to our house once a week and provides an hour of speech, physical, and occupational therapy. Since she is a speech therapist, Jordan has received a large amount of focus on her speech and seems to be improving quite a bit. Derrick and I also attend a class based on the book "It Takes Two To Talk" every Monday night and that teaches us how to work more effectively with Jordan on two way communication. It has helped both of us to feel more aware of what we can be doing to encourage her to not only speak, but communicate through gestures or other means of communication. She is using a few words with encouragement but is still very rarely using independent language. We continue to work with her daily and hope that soon she will be talking up a storm!!!
I know that there is so much more that I could write about, but for now this will do. I hope to try to keep this updated more frequently for those of you who follow her progress on here.
Monday, August 10, 2009
Jordan Update...WOW!!! It's been a while!!!
Jordan started in feeding therapy at Mary Free Bed a few weeks ago. We were unable to schedule with Ellen, the OT that worked with her last year before getting her feeding tube put in and who performed her swallow study in the beginning of July, because she had no openings for over a month. We started therapy with Jenny and have had several sessions. We started Jordan on pureed peaches and yogurt - just very small tastes on the back of a spoon or on the end of a Tic Tong. We found she seemed to know to swallow more often when the food was VERY cold so we stick it in the freezer for about 15 minutes before feeding her. To encourage a second swallow, we used a chilled metal spoon between tastes of food. Jordan often started the session doing well, but would gradually start to sound wet and coughing more frequently.
Jenny decided to try thickening water and using a squeeze bottle with a straw. We also shake it with ice when thickening it so that it is very cold. Jordan does very well taking little sips of water!! She actually learned to seal her lips around it and suck which is a great oral motor skill for her to learn. She normally gets between 5-10 sips per meal of thickened water and still sounds clear.
This basically has led us to find that Jordan is able to best handle almost pudding-thick liquids through a small straw. However when we tried flavored drinks (ie - kool-aid or yogurt), we found that she sounded worse. What is happening is that flavored foods create more saliva and Jordan is able to handle thicker liquids but not thin liquids (which saliva is). Therefore, we have come to the conclusion that Jordan needs to stay away from flavored foods and just stick with water for now. Because of this, Jenny is unable to make forward progress toward Jordan's feeding goals and will be discharging her soon. We will follow up with another swallow study in a few months to watch how she handles various temperatures of liquids through her squeeze bottle.
One of the goals for Jordan to work on in the coming months are oral exercises. I have some stretching techniques I will be doing for her cheeks/lips areas and if able to get my finger or a probe in her mouth, some cheek/gum stretches. For fun, Jordan and I get to find lots of toys that require oral motor skills (whistles, blow toys, kazoos, etc) and work with those to help her learn to create a seal around something and blowing and the positive response she gets from that action. We stopped by a dollar store this afternoon, but didn't find anything. If any of you see something that might be a good oral toy for her (including safe for a 2 year old and under a few bucks), please pick it up!! I will be happy to reimburse you!!!
Another thing that is happening is that Jordan is going to be having a few sessions of physical therapy at Mary Free Bed over the next month to work on some strength and balance. We are only able to cover a few co-pays so we will probably only have 3-4 sessions. Because Jordan is so active and busy they feel she will likely meet her milestones delayed, but within reasonable time.
As far as insurance goes, we have been frustrated by the fact that the Children's Special Healthcare Services which currently covers all of Jordan's swallowing issues, will not pick up anything for her cerebral palsy. Because she has been diagnosed as class 1, that is considered a developmental delay rather than a disability and so they don't cover her therapy. They said that if she should need orthodics, they may cover them under a special fund category, but they will not cover the overall diagnosis.
We also received our first check for Jordan under Social Security Disability. Unfortunately, due to a misunderstanding during the interview I had at the office, they thought we had checking and savings accounts at 2 banks (they had one listed but I corrected them with the actual bank we have accounts at - they included both under our assets). Therefore, they thought we had more money than we do, and we were considered financially ineligible. Now I am in the process of applying for "reconsideration" due to the inaccurate info. I imagine that this might take quite a while to correct so in the meantime, we are carefully using the 2 months income we did receive to cover medical bills and set some aside for her upcoming therapy.
We were also encouraged to apply for medicaid for all 3 of the kids on the chance that their medical expenses might be covered in full. I am finishing that paperwork and should get that out by the end of this week. I am hoping that well visits, sick visits, and prescriptions will be covered for all 3 of the kids!!
As far as Jordan's speech goes, she has been making amazing progress!!! She is trying to say words more often and some of them are even recognizable!! She has recently started saying "uh oh!" which is absolutely adorable!!! She is also now saying "mama" and "dada" which Derrick and I LOVE!!!!! This fall, Ken-O-Sha has agreed to have a speech pathologist come to our house for our home calls rather than a physical therapist. This will give Jordan and myself an opportunity to work one-on-one with a therapist learning some techniques for successful speech. For her group at school, she will be in a Speech Plus group for kids with speech and motor delays. They will work on both speech as well as physical therapy. The school is also allowing us to be a part of an educational class this fall through the Hanen Group called "It Takes Two To Talk." Derrick and I will be attending on Monday nights to learn how we can better encourage Jordan's speech progress. There are also 3 sessions where they videotape us interacting with Jordan to see what we are doing well and what we need to work on. We are both looking forward to this opportunity to learn more about what we can be doing to help her.
Well, I think that's about it!!! It has been a crazy, busy summer and I have LOVED it!!!!! We will be taking a family camping vacation in the Smokey Mountains in Tennessee in only a few weeks and I am so excited to have a chance to get away from our busy day-to-day lives and enjoy God's beautiful creation and my own wonderful family!!!
Jenny decided to try thickening water and using a squeeze bottle with a straw. We also shake it with ice when thickening it so that it is very cold. Jordan does very well taking little sips of water!! She actually learned to seal her lips around it and suck which is a great oral motor skill for her to learn. She normally gets between 5-10 sips per meal of thickened water and still sounds clear.
This basically has led us to find that Jordan is able to best handle almost pudding-thick liquids through a small straw. However when we tried flavored drinks (ie - kool-aid or yogurt), we found that she sounded worse. What is happening is that flavored foods create more saliva and Jordan is able to handle thicker liquids but not thin liquids (which saliva is). Therefore, we have come to the conclusion that Jordan needs to stay away from flavored foods and just stick with water for now. Because of this, Jenny is unable to make forward progress toward Jordan's feeding goals and will be discharging her soon. We will follow up with another swallow study in a few months to watch how she handles various temperatures of liquids through her squeeze bottle.
One of the goals for Jordan to work on in the coming months are oral exercises. I have some stretching techniques I will be doing for her cheeks/lips areas and if able to get my finger or a probe in her mouth, some cheek/gum stretches. For fun, Jordan and I get to find lots of toys that require oral motor skills (whistles, blow toys, kazoos, etc) and work with those to help her learn to create a seal around something and blowing and the positive response she gets from that action. We stopped by a dollar store this afternoon, but didn't find anything. If any of you see something that might be a good oral toy for her (including safe for a 2 year old and under a few bucks), please pick it up!! I will be happy to reimburse you!!!
Another thing that is happening is that Jordan is going to be having a few sessions of physical therapy at Mary Free Bed over the next month to work on some strength and balance. We are only able to cover a few co-pays so we will probably only have 3-4 sessions. Because Jordan is so active and busy they feel she will likely meet her milestones delayed, but within reasonable time.
As far as insurance goes, we have been frustrated by the fact that the Children's Special Healthcare Services which currently covers all of Jordan's swallowing issues, will not pick up anything for her cerebral palsy. Because she has been diagnosed as class 1, that is considered a developmental delay rather than a disability and so they don't cover her therapy. They said that if she should need orthodics, they may cover them under a special fund category, but they will not cover the overall diagnosis.
We also received our first check for Jordan under Social Security Disability. Unfortunately, due to a misunderstanding during the interview I had at the office, they thought we had checking and savings accounts at 2 banks (they had one listed but I corrected them with the actual bank we have accounts at - they included both under our assets). Therefore, they thought we had more money than we do, and we were considered financially ineligible. Now I am in the process of applying for "reconsideration" due to the inaccurate info. I imagine that this might take quite a while to correct so in the meantime, we are carefully using the 2 months income we did receive to cover medical bills and set some aside for her upcoming therapy.
We were also encouraged to apply for medicaid for all 3 of the kids on the chance that their medical expenses might be covered in full. I am finishing that paperwork and should get that out by the end of this week. I am hoping that well visits, sick visits, and prescriptions will be covered for all 3 of the kids!!
As far as Jordan's speech goes, she has been making amazing progress!!! She is trying to say words more often and some of them are even recognizable!! She has recently started saying "uh oh!" which is absolutely adorable!!! She is also now saying "mama" and "dada" which Derrick and I LOVE!!!!! This fall, Ken-O-Sha has agreed to have a speech pathologist come to our house for our home calls rather than a physical therapist. This will give Jordan and myself an opportunity to work one-on-one with a therapist learning some techniques for successful speech. For her group at school, she will be in a Speech Plus group for kids with speech and motor delays. They will work on both speech as well as physical therapy. The school is also allowing us to be a part of an educational class this fall through the Hanen Group called "It Takes Two To Talk." Derrick and I will be attending on Monday nights to learn how we can better encourage Jordan's speech progress. There are also 3 sessions where they videotape us interacting with Jordan to see what we are doing well and what we need to work on. We are both looking forward to this opportunity to learn more about what we can be doing to help her.
Well, I think that's about it!!! It has been a crazy, busy summer and I have LOVED it!!!!! We will be taking a family camping vacation in the Smokey Mountains in Tennessee in only a few weeks and I am so excited to have a chance to get away from our busy day-to-day lives and enjoy God's beautiful creation and my own wonderful family!!!
Thursday, July 2, 2009
Oral Motor Evaluation and Video Swallow Study
This morning Jordan was evaluated at Mary Free Bed for her oral motor skills. Ellen Rosevear, her feeding therapist from last year, worked with her, making sure she was careful all of the quirky things that has made feeding Jordan such a challenge!!! During January's video swallow study, Rose used small bites of thickened Pediasure for the test, but Ellen decided to use pureed peaches to give her extra flavor and used small tastes given on a Nuk toothbrush. Jordan did well. She was sooooooo excited to eat!!!!! The biggest challenge was that she pooled the food in the back of her throat without swallowing it. It started to drip down and she eventually swallowed. There was only one time we believe she had a silent aspiration, but because we gave her such small amounts, it was not a lot (like in January). Ellen was very cautious and careful with thickness and quantity and stopped the study before Jordan had a chance to fatique.
This leads us to the beginning of feeding therapy (again!!)!!! We will start out with 2 times a week and see how that goes. I am able to start her on some tastes at home of pureed peaches 2-3 tastes/2 times a day. We are also going to chill the food so that the flavor and temperature are likely to provide Jordan the sensory input to swallow the food. I am also supposed to follow up the taste with a dry spoon to encourage swallowing. The biggest challenge to all of this is that Jordan is not satisfied with 2-3 small tastes and we may see lots of frustration when we stop feeding her!! That girl wants to eat sooooo badly, but we have to keep it to a minimum until we can get her to control her swallow. Ellen also noticed that Jordan still has difficulty controlling her spit. This is also something that we hope will improve as she begins oral/feeding therapy.
Finally, after discussing with Ellen the gastrointestinal difficulties Jordan has had since having the tube put in, Ellen thinks that she may have blown her nissen. This is the procedure she had done when the feeding tube was put in - they take the top portion of the stomach and wrap it around her esophogus, creating a one-way valve for food to go in but preventing burping, reflux, and vomiting. Over the past several months, Jordan has been sick several times with wretching and gagging and her food has even come up as though she was spitting up. Although not forceful, there are large quantities that indicate that the nissen has come undone. There are also times when Jordan burps or we can see/hear her reflux. This means we may put her back on reflux meds for now and see if it is necessary to re-do the nissen. The other option is a new tube called gj tube that would connect directly to her intestines rather than her stomach so the food can't go back up the espohogus. Hopefully, we won't have to go down that road again!!!
So now we start down the road of a VERY busy schedule!!! She will have oral/feeding therapy 2 times a week, she starts physical therapy soon probably once a week, she currently has the Early On therapist at our house once a week and group once a week (although many weeks off for the summer). We have many upcoming appointments as well - Jordan sees the hand surgeon, optholomogist, and her 2 yr check up. All of that is in addition to the appointments for the rest of us - dentist, orthodontist, optholomogist, pediatritian, etc....
Please pray that I am able to schedule all of the necessary appointments and I don't lose my sanity with the hectic and busy schedule. Also pray for us financially as the cost of childcare for all of these appointments will be increasing as well. Thank you, everyone for your support, encouragement, and prayers!! God has led us down this path for a reason, and we are just the tools he is using to help Jordan grow into the person He desires her to be.
This leads us to the beginning of feeding therapy (again!!)!!! We will start out with 2 times a week and see how that goes. I am able to start her on some tastes at home of pureed peaches 2-3 tastes/2 times a day. We are also going to chill the food so that the flavor and temperature are likely to provide Jordan the sensory input to swallow the food. I am also supposed to follow up the taste with a dry spoon to encourage swallowing. The biggest challenge to all of this is that Jordan is not satisfied with 2-3 small tastes and we may see lots of frustration when we stop feeding her!! That girl wants to eat sooooo badly, but we have to keep it to a minimum until we can get her to control her swallow. Ellen also noticed that Jordan still has difficulty controlling her spit. This is also something that we hope will improve as she begins oral/feeding therapy.
Finally, after discussing with Ellen the gastrointestinal difficulties Jordan has had since having the tube put in, Ellen thinks that she may have blown her nissen. This is the procedure she had done when the feeding tube was put in - they take the top portion of the stomach and wrap it around her esophogus, creating a one-way valve for food to go in but preventing burping, reflux, and vomiting. Over the past several months, Jordan has been sick several times with wretching and gagging and her food has even come up as though she was spitting up. Although not forceful, there are large quantities that indicate that the nissen has come undone. There are also times when Jordan burps or we can see/hear her reflux. This means we may put her back on reflux meds for now and see if it is necessary to re-do the nissen. The other option is a new tube called gj tube that would connect directly to her intestines rather than her stomach so the food can't go back up the espohogus. Hopefully, we won't have to go down that road again!!!
So now we start down the road of a VERY busy schedule!!! She will have oral/feeding therapy 2 times a week, she starts physical therapy soon probably once a week, she currently has the Early On therapist at our house once a week and group once a week (although many weeks off for the summer). We have many upcoming appointments as well - Jordan sees the hand surgeon, optholomogist, and her 2 yr check up. All of that is in addition to the appointments for the rest of us - dentist, orthodontist, optholomogist, pediatritian, etc....
Please pray that I am able to schedule all of the necessary appointments and I don't lose my sanity with the hectic and busy schedule. Also pray for us financially as the cost of childcare for all of these appointments will be increasing as well. Thank you, everyone for your support, encouragement, and prayers!! God has led us down this path for a reason, and we are just the tools he is using to help Jordan grow into the person He desires her to be.
Genetics Test Results
Yesterday I received notification from the geneticist that Jordan's test results came back normal. We were looking for a microdeletion - a small portion of a chromosome that is missing or malformed. While this would seem to be a relief, it was actually very disappointing. We still have no answers for the many things that baffle us about this little girl. Primarily, why she is so small, yet proportionate, for her age. At this point, Dr. Toriello feels that we are back to square one with no other leads to syndromes or disorders. However, she, along with her other Dr.'s and therapists, still believe that there is something else going on with Jordan. She would like to have her evaluated again in a year or so and the genetics counselor, Sara, told us that there hopefully will be a new geneticist in Grand Rapids by next fall so if we can wait until then, it might be good to have her looked at with fresh eyes!! Please join us in continued prayer for additional diagnosis. We continue to view her as a gift from God, but also hope to be able to more fully understand what to anticipate for her future.
Tuesday, June 23, 2009
Frustrations and Celebrations
Yesterday brought both frustrations and celebrations. To start the day, Jordan's therapist came over for her home call. After having requested that next year Jordan have home calls by a speech pathologist, she informed me that the school had read her evaluation and had decided that she would continue to be her service provider because she was cross-trained in that area. I really feel it is important for Jordan's speech to be the focus of these visits because she will be starting physical therapy at Spectrum Health in a few weeks and that will not be as important for her through Early On. The Dr.'s and therapists at the HDVCH Gerber Center all made that recommendation for her so I am extremely frustrated that I am now going to have to pursue this further so Jordan can receive the treatment she should. I spoke with the speech path at the HDVCH GC and she recommended I contact the principal and push for Jordan to have a speech path/therapist come to our home.
Later in the afternoon, we had some wonderful news. I had a second phone interview for her to receive Social Security Disability Income and found out that we qualified and have been approved!!! I will be receiving a packet of information soon and need to gather all of the documentation they require for proof of income and assets and I have an official in person interview on Monday to finalize the payment amount. This is HUGE for us because we have been struggling financially and there is no opportunity for me to return to work due to the amount of therapy she will begin receiving once we start physical therapy and oral therapy in the next few weeks as well as the cost of childcare for a special needs child.
It's amazing how this journey brings such highs and lows! I am absolutely amazed at how much work it takes to be her advocate in so many ways!!! Today I want to just sit back and enjoy my kids, but there are so many more phone calls to be made and things to get done to ensure that she receives the BEST care available.
Later in the afternoon, we had some wonderful news. I had a second phone interview for her to receive Social Security Disability Income and found out that we qualified and have been approved!!! I will be receiving a packet of information soon and need to gather all of the documentation they require for proof of income and assets and I have an official in person interview on Monday to finalize the payment amount. This is HUGE for us because we have been struggling financially and there is no opportunity for me to return to work due to the amount of therapy she will begin receiving once we start physical therapy and oral therapy in the next few weeks as well as the cost of childcare for a special needs child.
It's amazing how this journey brings such highs and lows! I am absolutely amazed at how much work it takes to be her advocate in so many ways!!! Today I want to just sit back and enjoy my kids, but there are so many more phone calls to be made and things to get done to ensure that she receives the BEST care available.
Monday, May 11, 2009
Multidisciplinary Development Pediatric Clinic Evaluation
Today Jordan was evaluated at the Multidisciplinary Development Pediatric Clinic at the Gerber Center. She has been in the Feeding Clinic for the past year, but the determination was made that her challenges went beyond feeding and she was moved to this clinic after her March feeding appt. She will be evaluated every 6 months by a team of specialists who together evaluate her progress and determine her treatment plan. The appointment runs about 4 hours and Jordan did great!! She started to break down during the last hour but she made it through!
She weighed in at 20 lbs 14 oz and was 30 3/8 in long. She is about the weight of an average 12 month old and length of an average 14 month old. She is in the 25th percentile proportionately (which is good!) Everyone was pleased with her weight gain and they will continue to keep her on the same feeding program.
We started the morning by seeing the psychologist, Steve Pastyrnak. He did a developmental assessment on Jordan and found that she was cognitively at about 19 months, receptive communication was at about 19 months and expressive communication was at about 17 months. Fine motor was at about 15 months and gross motor was at about 12 months. (I didn't write these down at the time so I am pretty sure I got them right, but I will update later when I get the report if I am wrong on any of them.) I was very surprised at these results, especially the expressive communication. We have felt that Jordan's not being able to talk showed a more significant delay but he found that although she may not be using words for everything, she is clearly communicating her wants and needs. He did, however, agree that her strongest need is in speech/communication therapy and recommended we pursue a focus in this area. Her gross motor, while significantly delayed, has shown significant improvement and will continue to improve as long as we continue to work with her. We discussed discipline and some appropriate techniques to use with Jordan.
Next we saw the social worker, Lori. We went over various services and made sure that we were utilizing all resources that are available to us.
Next we saw the speech pathologist, Jane, and the dietitian. They felt that Jordan was doing a good job at expressing herself with various vowel sounds and tones, but was still struggling with progressing through new consonant sounds. They recommended Jordan receive oral motor (Beckman) therapy with speech and feeding goals. They also want us to repeat a video fluroscopic swallow study to see if we are able to pursue oral feeding. The again reinforced that Jordan's Early On therapy be speech-focused.
Next we saw the physical therapist, Lisa, and occupational therapist. They were impressed at some of the things Jordan was doing and want us to work on her carrying an object (like a ball) with 2 hands while walking, squat for a toy rather than getting down on knees, and to get up from the middle of the floor. They also want us to work on fine motor by using sidewalk chalk, color forms or window clings, and hiding objects in playdoh for her to use her fingers to dig out. They encouraged me to keep her in a rear-facing car seat until she reaches the maximum weight for rear-facing (usually about 30 lbs).
Next a nurse came in and performed a hearing evaluation. Jordan passed for both ears.
Finally we saw the nurse practitioner, Jeanie Koops and Dr. Burdo-Hartman. Jeanie did a thorough exam and felt that Jordan definitely showed significant improvements from her evaluation 1 year ago. Then Dr. Burdo-Hartman came in and checked Jordan over. They want her to be evaluated by an ophthalmologist to be evaluated for vision problems and genetic syndrome. They also want her to keep her appointment with Dr. Toriello, the geneticist to pursue any other possible syndromes.
Dr. Burdo-Hartman only did a quick 5 minute evaluation of Jordan which was kind of frustrating for me. I know that all of my concerns were addressed during the entire day of evaluations, but I had hoped for more time with her to discuss her opinion of those same topics.
The diagnoses that were listed on her discharge instructions are 1-Cerebral Palsy (gross motor function classification 1), 2-Dysphagia with Aspiration (Nissen & G-tube), 3- Dysmorphic features, and 4-Global Developmental Delay. We will be back on November 9th for another evaluation. Later in the day, all of the people that evaluated her will come together and review her information and decide if together they have any different diagnosis or treatment plan. In a few weeks, I will receive the written evaluation summary and will update with any information I have missed.
After 4 1/2 hours, Jordan and I were more than ready to go home. She fell asleep on the way home and I was able to have some lunch and then write this update. I am exhausted, yet feel excited about Jordan's future!
She weighed in at 20 lbs 14 oz and was 30 3/8 in long. She is about the weight of an average 12 month old and length of an average 14 month old. She is in the 25th percentile proportionately (which is good!) Everyone was pleased with her weight gain and they will continue to keep her on the same feeding program.
We started the morning by seeing the psychologist, Steve Pastyrnak. He did a developmental assessment on Jordan and found that she was cognitively at about 19 months, receptive communication was at about 19 months and expressive communication was at about 17 months. Fine motor was at about 15 months and gross motor was at about 12 months. (I didn't write these down at the time so I am pretty sure I got them right, but I will update later when I get the report if I am wrong on any of them.) I was very surprised at these results, especially the expressive communication. We have felt that Jordan's not being able to talk showed a more significant delay but he found that although she may not be using words for everything, she is clearly communicating her wants and needs. He did, however, agree that her strongest need is in speech/communication therapy and recommended we pursue a focus in this area. Her gross motor, while significantly delayed, has shown significant improvement and will continue to improve as long as we continue to work with her. We discussed discipline and some appropriate techniques to use with Jordan.
Next we saw the social worker, Lori. We went over various services and made sure that we were utilizing all resources that are available to us.
Next we saw the speech pathologist, Jane, and the dietitian. They felt that Jordan was doing a good job at expressing herself with various vowel sounds and tones, but was still struggling with progressing through new consonant sounds. They recommended Jordan receive oral motor (Beckman) therapy with speech and feeding goals. They also want us to repeat a video fluroscopic swallow study to see if we are able to pursue oral feeding. The again reinforced that Jordan's Early On therapy be speech-focused.
Next we saw the physical therapist, Lisa, and occupational therapist. They were impressed at some of the things Jordan was doing and want us to work on her carrying an object (like a ball) with 2 hands while walking, squat for a toy rather than getting down on knees, and to get up from the middle of the floor. They also want us to work on fine motor by using sidewalk chalk, color forms or window clings, and hiding objects in playdoh for her to use her fingers to dig out. They encouraged me to keep her in a rear-facing car seat until she reaches the maximum weight for rear-facing (usually about 30 lbs).
Next a nurse came in and performed a hearing evaluation. Jordan passed for both ears.
Finally we saw the nurse practitioner, Jeanie Koops and Dr. Burdo-Hartman. Jeanie did a thorough exam and felt that Jordan definitely showed significant improvements from her evaluation 1 year ago. Then Dr. Burdo-Hartman came in and checked Jordan over. They want her to be evaluated by an ophthalmologist to be evaluated for vision problems and genetic syndrome. They also want her to keep her appointment with Dr. Toriello, the geneticist to pursue any other possible syndromes.
Dr. Burdo-Hartman only did a quick 5 minute evaluation of Jordan which was kind of frustrating for me. I know that all of my concerns were addressed during the entire day of evaluations, but I had hoped for more time with her to discuss her opinion of those same topics.
The diagnoses that were listed on her discharge instructions are 1-Cerebral Palsy (gross motor function classification 1), 2-Dysphagia with Aspiration (Nissen & G-tube), 3- Dysmorphic features, and 4-Global Developmental Delay. We will be back on November 9th for another evaluation. Later in the day, all of the people that evaluated her will come together and review her information and decide if together they have any different diagnosis or treatment plan. In a few weeks, I will receive the written evaluation summary and will update with any information I have missed.
After 4 1/2 hours, Jordan and I were more than ready to go home. She fell asleep on the way home and I was able to have some lunch and then write this update. I am exhausted, yet feel excited about Jordan's future!
Wednesday, April 15, 2009
Milestones and Memories
I have recently come to realize that the importance of milestones and the ways we celebrate them is more for the parents than for the child. These are some of my random thoughts about this.
While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!
At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??
I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.
Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.
Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.
I am having to learn to let go.
It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.
While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!
At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??
I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.
Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.
Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.
I am having to learn to let go.
It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.
Sunday, April 5, 2009
Recovering from being sick AGAIN!!!
Jordan was sick again about 2 weeks ago. This time it started with her just not digesting her food quickly. Instead of being ready to eat after 3 hours, it took her 5-6 hours to empty her stomach. That turned into cold-like symptoms, diarrhea, and lots of gagging and spitting up. The nurse had me drop the Boost 1.5 and dilute the Pediasure with Pedialite giving her less quantity at each feeding. We also started her on a feeding pump to deliver the food at a slower rate making it less likely to cause her stomach to get upset. We were also able to use the pump to deliver food throughout the night without me having to get up for night feedings. This illness eventually ended up with a pneumonia diagnosis based on an x-ray.
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
Thursday, February 19, 2009
First Steps!!!!!
Jordan took her first steps a few nights ago!! I was sitting on the floor playing with her and she pulled up to standing on the couch - I held my hands out to her and she took 2 exciting and quick steps to me!! I was thrilled and amazed!!! I ran upstairs and grabbed the camera and my videographer (Derrick) and we got some footage of her doing it again! I am going to try to edit it down and load it soon (it's 2 1/2 minutes and she walks in the first 30 seconds - we kept trying to get more but she wouldn't do it).
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
Monday, February 9, 2009
Hypoplastic Thumb...what does that mean??!!??!!
Today we went and saw Dr. Kuz at the Michigan Hand Center. Ever since Jordan was born I have been bothered by the fact that her hands seemed strange. I wasn't sure exactly what it was but last summer it was mentioned by Dr. Torielly that she had extra fat pads on the palm of her hand. It wasn't a big deal, but it still didn't explain why her thumbs looked strange. Then a few weeks ago I had someone at Ken-O-Sha look at them and she recommended we see a specialist. Last week Lynn Fagerman and Dr. Koetsier both recommended we see Dr. Kuz and he had an opening today so we got in right away.
He examined her hands and then we had some x-rays done. After reviewing them, he diagnosed her with a Hypoplastic Thumb (Type II Blauth). That basically means her thumb is small and there are minor abnormalities in the muscles within the thumb. The joint of the thumb (metacarpophalangeal joint) is unstable causing the thumb to wobble. And the web space between the thumb and index finger is narrow and tight and restricts movement.
Dr. Kuz recommended reconstructive surgery to stabilize the joint, lengthen the webbing between the index finger and thumb and transfer a muscle from the pinkie to the thumb to allow for more thumb use and to cosmetically fix the appearance of the thumb. He said that he didn't think we needed to do it now but recommended we wait until she is around 4.
He said that this condition is usually caused by a lack of cell development. It can often be associated with several syndromes, but Jordan doesn't seem to have any noticeable symptoms that would lead us to any diagnosis. This information will be useful when we meet with the geneticist, Dr. Toriello in June as an additional diagnosis that she might be able to link to something.
Although Jordan doesn't have extreme difficulties with the use of her thumb, she does favor her left hand. We don't know if she is left handed or just finds it easier to use her left hand for certain tasks due to the small thumb on her right. He recommended we continue to work with her in therapy, encouraging her to use her right thumb and continue to develop the communication between her brain and thumb.
I am glad to finally have some more answers. Although this has not been a major concern, it has bothered me since she was born and I am relieved to understand the construction of her hand and know that there is an answer and solution.
Please continue to pray for Jordan and her development. She has started entering into her toddler behavior and is having several temper tantrums a day. This morning during therapy she got frustrated and bit my collarbone and it HURT!!! I looked later and she actually broke the skin!! She is frequently throwing herself around when she doesn't get her way or what she wants. This is made more difficult by her lack of communication skills. I continue to work with her on verbal sounds and sign language, but I don't see much improvement/advancement in either. She also has a tendency to bite herself (hands) out of frustration and throw herself around when she gets mad. I try to soothe her when she gets frustrated, but it is sometimes frustrating for me as well and I need to keep my cool. I guess I am somewhat unsure if I treat her the same as a "normal" child having a temper tantrum or in a special way because of her situation. I feel like I still have sooooo much left to learn!!
He examined her hands and then we had some x-rays done. After reviewing them, he diagnosed her with a Hypoplastic Thumb (Type II Blauth). That basically means her thumb is small and there are minor abnormalities in the muscles within the thumb. The joint of the thumb (metacarpophalangeal joint) is unstable causing the thumb to wobble. And the web space between the thumb and index finger is narrow and tight and restricts movement.
Dr. Kuz recommended reconstructive surgery to stabilize the joint, lengthen the webbing between the index finger and thumb and transfer a muscle from the pinkie to the thumb to allow for more thumb use and to cosmetically fix the appearance of the thumb. He said that he didn't think we needed to do it now but recommended we wait until she is around 4.
He said that this condition is usually caused by a lack of cell development. It can often be associated with several syndromes, but Jordan doesn't seem to have any noticeable symptoms that would lead us to any diagnosis. This information will be useful when we meet with the geneticist, Dr. Toriello in June as an additional diagnosis that she might be able to link to something.
Although Jordan doesn't have extreme difficulties with the use of her thumb, she does favor her left hand. We don't know if she is left handed or just finds it easier to use her left hand for certain tasks due to the small thumb on her right. He recommended we continue to work with her in therapy, encouraging her to use her right thumb and continue to develop the communication between her brain and thumb.
I am glad to finally have some more answers. Although this has not been a major concern, it has bothered me since she was born and I am relieved to understand the construction of her hand and know that there is an answer and solution.
Please continue to pray for Jordan and her development. She has started entering into her toddler behavior and is having several temper tantrums a day. This morning during therapy she got frustrated and bit my collarbone and it HURT!!! I looked later and she actually broke the skin!! She is frequently throwing herself around when she doesn't get her way or what she wants. This is made more difficult by her lack of communication skills. I continue to work with her on verbal sounds and sign language, but I don't see much improvement/advancement in either. She also has a tendency to bite herself (hands) out of frustration and throw herself around when she gets mad. I try to soothe her when she gets frustrated, but it is sometimes frustrating for me as well and I need to keep my cool. I guess I am somewhat unsure if I treat her the same as a "normal" child having a temper tantrum or in a special way because of her situation. I feel like I still have sooooo much left to learn!!
Thursday, February 5, 2009
Jordan pulls her tube out!!!
Today was a crazy day!!!
It started this morning when Mak got up an hour early and read every clock in the house wrong and stood at the bus stop for 15 minutes before coming home and realizing that he got up so early! Then my mom came up to spend the day and I headed out with Conner to pick up Mak and the three of us had dentist appointments. On the way there, the van kinda went into neutral without actually switching gears and then went right back into drive - kinda strange, but I was just planning on telling Derrick about it later. Then after our appointment we got in the van and I couldn't get it into gear. I put it in reverse but it wouldn't go - I gave it some gas and it eventually shifted into gear but after I backed out of the parking spot and put it in drive, it wouldn't go again - it seemed to be stuck in neutral - I coasted back into our parking spot. I tried to restart the van and over and over again I tried to get it to back out but it never seemed to stay in gear. Since I was not about to get out on the roads with a car that wouldn't stay in gear, I called a friend to give us a ride home. We were almost there when I got a call from Derrick telling me that Jordan had pulled her feeding tube out and I needed to get home right away!!!
My mom was feeding Jordan and she pulled on the tube and it popped right out! It was only a few days ago that Lynn Fagerman mentioned to me that she was nearing a good time for a routine tube change - about every 3 months. My mom had her sitting on her changing table when I got home and since it had only been out for about 5 minutes, I grabbed a new one and amazingly put it right in and inflated the balloon with no problems. Jordan was fine and she now has a new tube that should last for a few more months.
I wasn't sure I could do it before, but now that I have seen it and done it, I guess I can! It's amazing what experiencing something can teach you. I was so scared, but when I pushed it in the hole and it went it, I had a HUGE sense of relief! I now have a new sense of confidence with Jordan and her tube.
However, I think my mom now has more fears and insecurities about Jordan. She was the one that was here and experienced it falling out and was not sure what to do. I hope that this experience doesn't make her uneasy about caring for Jordan - she was pretty shaken up about all of it. Please be praying for my mom to feel okay about everything - she needs to know that this is not something that happens every day and she didn't do anything wrong to cause it to happen. Please pray for to have a peace about it and a willingness to care for her again.
It started this morning when Mak got up an hour early and read every clock in the house wrong and stood at the bus stop for 15 minutes before coming home and realizing that he got up so early! Then my mom came up to spend the day and I headed out with Conner to pick up Mak and the three of us had dentist appointments. On the way there, the van kinda went into neutral without actually switching gears and then went right back into drive - kinda strange, but I was just planning on telling Derrick about it later. Then after our appointment we got in the van and I couldn't get it into gear. I put it in reverse but it wouldn't go - I gave it some gas and it eventually shifted into gear but after I backed out of the parking spot and put it in drive, it wouldn't go again - it seemed to be stuck in neutral - I coasted back into our parking spot. I tried to restart the van and over and over again I tried to get it to back out but it never seemed to stay in gear. Since I was not about to get out on the roads with a car that wouldn't stay in gear, I called a friend to give us a ride home. We were almost there when I got a call from Derrick telling me that Jordan had pulled her feeding tube out and I needed to get home right away!!!
My mom was feeding Jordan and she pulled on the tube and it popped right out! It was only a few days ago that Lynn Fagerman mentioned to me that she was nearing a good time for a routine tube change - about every 3 months. My mom had her sitting on her changing table when I got home and since it had only been out for about 5 minutes, I grabbed a new one and amazingly put it right in and inflated the balloon with no problems. Jordan was fine and she now has a new tube that should last for a few more months.
I wasn't sure I could do it before, but now that I have seen it and done it, I guess I can! It's amazing what experiencing something can teach you. I was so scared, but when I pushed it in the hole and it went it, I had a HUGE sense of relief! I now have a new sense of confidence with Jordan and her tube.
However, I think my mom now has more fears and insecurities about Jordan. She was the one that was here and experienced it falling out and was not sure what to do. I hope that this experience doesn't make her uneasy about caring for Jordan - she was pretty shaken up about all of it. Please be praying for my mom to feel okay about everything - she needs to know that this is not something that happens every day and she didn't do anything wrong to cause it to happen. Please pray for to have a peace about it and a willingness to care for her again.
Neurodevelopmental/Feeding Appt.
On Tuesday of this week, 2/3, Jordan had an appointment with Lynn Fagerman at the Gerber Center. They started by weighing and measuring her - she was 19 lbs 1 oz - a loss of 4 oz since a week ago. I was concerned because she hasn't missed any feedings and yet is losing weight. Lynn said that she isn't getting enough calories and is replacing one of her bottles of Pediasure with Boost Kids Essentials 1.5 which is supposed to have double the calories of Pediasure. We will start that as soon as it is delivered by Airway Oxygen.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Oral Therapy
Last Tuesday, 1/27, Jordan went in for her first oral therapy appointment at Mary Free Bed. We met with Ellen and nurse Jane and we chatted for a few minutes about her progress over the past 5 months. They weighed and measured her - 19 lbs 5 oz and 29.5 inches - a gain of 12 oz since 1/3, but still below the 3rd%.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
Thursday, January 15, 2009
No Food Yet!!
This morning I took Jordan in to Mary Free Bed for a videofluroscopy (video swallow study) and Oral Motor Evaluation. I met Rose and we talked briefly about Jordan's history and her current oral experiences. Since she doesn't eat anything by mouth her only exposure is through toys, pacifiers, and anything she picks up off the ground and puts in her mouth!! I explained that they had recommended that we allow her to pleasure feed for 2-3 bites for 3 meals a day of honey/pudding thick Pediasure but she cried when we took the food away so I stopped doing that after only a few days for fear of creating a food aversion.
We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.
Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.
The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.
She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.
I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!
We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.
Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.
The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.
She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.
I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!
Monday, January 12, 2009
It's Been a While...
It's been quite a while since I've posted anything here. I guess no news is good news. But in reality, it has been the craziness of our lives that has kept me from keeping everyone up to date on Jordan.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
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