I feel like I have been a delinquent blogger lately. There has been so much going on and so much I want to share, but I never seem to find the time to sit and write it all out. I do think that posting little status updates on Facebook seems to have replaced some of my fuller blog entries. Unfortunately, those are so short, they don't always tell the whole story.
Christmas morning, Jordan received a Jump-O-Lene!! This is an inflatable trampoline measuring 8 feet across. We had to move some toys out of the basement and rearrange things to make it fit, but it's a great addition to our playroom!! It's a great way for Jordan and Conner to both get their exercise! Therapeutically, it's great for Jordan to work on her core strength and balance and well as her sensory stimulation.
Since Derrick and I spent last fall attending a class called It Takes Two to Talk to help us learn how to work with Jordan to encourage communication, she was not in a group class. However, in January she started in the toddler class. The first class was a complete disaster - she cried during every transition!!! They did some fun stuff with the kids - they brought in bins full of snow and let them dig in it with shovels!! I really need to do this with the kids here at home - what a great way for them to play in the snow without having to bundle up and go out into it! Since then, Jordan has done great in the class and we love it!! There is talk of them starting a speech/language class so we are currently waiting to hear when that will start.
Jordan had her calories increased in November after her appointment at the Gerber Center because they didn't think she was gaining weight fast enough (1 pound in 6 months). After 2 months at the increased calories, she was gaining a pound a month!!!! They agreed that this was much too fast as it put her over the 50th percentile for her body mass!! They decreased her calories (although they were slightly above what they had been before) and after a month she is gaining slowly. She is now up to 23 lbs. 15 oz - almost 24 lbs!!!!
Jordan still has a tendency to put all sorts of things in her mouth - particularly small things she finds laying around (crumbs on the table, stickers Conner has put on things, etc...) In the end of January, we had a big scare with Jordan! She was up in Conner's room playing while I made lunch when I heard her start gagging. I ran up and found her standing there with a mouthful of white paste. I realized that she had taken a bite of sidewalk chalk and had chewed it up and now had no idea what to do with it!! I grabbed her and ran down the stairs while sweeping her mouth and then rinsing it out with water. She was still gagging and so I dialed 911. While on the phone with them, she cleared most of what was obstructing her breathing and I gave her some sips of her thickened water. She seemed okay so they never dispatched anyone. However, we then had to face the possibility that she may have aspirated some of the chalk so I made a call to poison control to talk with them about the signs to watch for. She seemed fine at that point and never did show any complications but it was a HUGE wake-up call for me!!! I have been trying to be diligent about watching her and keeping things out of reach that are not safe for her. Unfortunately, with a 4 year old in the house, sometimes things get left out. We are all working hard on this.
This event was extremely emotional for me! Not only was the concern for Jordan's safety a major part, I had to once again face the fact that my baby girl just can't do things like most kids her age. At 2 1/2 I am still worrying about her putting things in her mouth the way a 6 month old does. We don't know how long she will continue to put things in her mouth and we don't know if at any point she will learn to swallow so that even if the things are in her mouth, at least she will not gag on them. It makes me sad to see her strong desire to be oral and yet have to constantly tell her "not in!" We know that she has some understanding of this and yet sometimes she is just curious and sometimes she is a defiant 2 year old!! My prayer is that she will come to an understanding and acceptance that she cannot put things in her mouth. However, I don't want this to create an oral aversion so that when she is capable of swallowing she won't put things in her mouth (at least the food we want her to!)
Last week Jordan went to Mary Free Bed to be evaluated for new thumb splints. She had received some neoprene ones through Ken-O-Sha last fall, but the Occupational Therapist at the Gerber Center thought she might benefit from some with hard plastic supports to stabilize the thumbs more effectively. The therapists evaluating her were amazed at how unstable her thumbs were! They are constantly hyper-extending backwards but she doesn't bend her thumb to compensate for it's position so they end up just looking weird!! The discussed several options and narrowed it down to 2 designs that they thought would work best for her. One was a very simple design and they made it and fit it right there. It is a white hard material that circles her thumb and part way across her palm and then has a strip that wraps around the back of her hand and connects with a neoprene velcro strap to the part on the palm. Due to the extreme malformation of her right thumb they almost splint the entire thumb in order to stabilize it. The left one is a bit more open for movement. Jordan has done pretty well with them, but she takes them off quite a bit more than the previous ones. I suspect that they aren't very comfortable and since she can't move them and many fine motor tasks are quite difficult, she would rather go without them. The second design is on order and should be in sometime next week. We will go in and have them form the hard part around her thumb, but the majority of the splint is neoprene and should be much more comfortable for her. We had fun picking out colors!!! At first, I avoided the bright pink because it was so bright, but then when I showed her the options, it was the one she picked out. However, after remembering how dirty her tan one got, I decided that it would look awful if her bright pink splint was covered with dirty spots so we settled for a dark purple :)
Well, that pretty much gets everything up to date!! I will post more later on her upcoming surgery.
Friday, February 19, 2010
Wednesday, December 9, 2009
Appointment with the Ear, Nose and Throat Doc...and upcoming surgery
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!!
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!!
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!!!
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