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!!!
Tuesday, November 10, 2009
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!
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