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.
Thursday, July 2, 2009
Genetics Test Results
Yesterday I received notification from the geneticist that Jordan's test results came back normal. We were looking for a microdeletion - a small portion of a chromosome that is missing or malformed. While this would seem to be a relief, it was actually very disappointing. We still have no answers for the many things that baffle us about this little girl. Primarily, why she is so small, yet proportionate, for her age. At this point, Dr. Toriello feels that we are back to square one with no other leads to syndromes or disorders. However, she, along with her other Dr.'s and therapists, still believe that there is something else going on with Jordan. She would like to have her evaluated again in a year or so and the genetics counselor, Sara, told us that there hopefully will be a new geneticist in Grand Rapids by next fall so if we can wait until then, it might be good to have her looked at with fresh eyes!! Please join us in continued prayer for additional diagnosis. We continue to view her as a gift from God, but also hope to be able to more fully understand what to anticipate for her future.
Tuesday, June 23, 2009
Frustrations and Celebrations
Yesterday brought both frustrations and celebrations. To start the day, Jordan's therapist came over for her home call. After having requested that next year Jordan have home calls by a speech pathologist, she informed me that the school had read her evaluation and had decided that she would continue to be her service provider because she was cross-trained in that area. I really feel it is important for Jordan's speech to be the focus of these visits because she will be starting physical therapy at Spectrum Health in a few weeks and that will not be as important for her through Early On. The Dr.'s and therapists at the HDVCH Gerber Center all made that recommendation for her so I am extremely frustrated that I am now going to have to pursue this further so Jordan can receive the treatment she should. I spoke with the speech path at the HDVCH GC and she recommended I contact the principal and push for Jordan to have a speech path/therapist come to our home.
Later in the afternoon, we had some wonderful news. I had a second phone interview for her to receive Social Security Disability Income and found out that we qualified and have been approved!!! I will be receiving a packet of information soon and need to gather all of the documentation they require for proof of income and assets and I have an official in person interview on Monday to finalize the payment amount. This is HUGE for us because we have been struggling financially and there is no opportunity for me to return to work due to the amount of therapy she will begin receiving once we start physical therapy and oral therapy in the next few weeks as well as the cost of childcare for a special needs child.
It's amazing how this journey brings such highs and lows! I am absolutely amazed at how much work it takes to be her advocate in so many ways!!! Today I want to just sit back and enjoy my kids, but there are so many more phone calls to be made and things to get done to ensure that she receives the BEST care available.
Later in the afternoon, we had some wonderful news. I had a second phone interview for her to receive Social Security Disability Income and found out that we qualified and have been approved!!! I will be receiving a packet of information soon and need to gather all of the documentation they require for proof of income and assets and I have an official in person interview on Monday to finalize the payment amount. This is HUGE for us because we have been struggling financially and there is no opportunity for me to return to work due to the amount of therapy she will begin receiving once we start physical therapy and oral therapy in the next few weeks as well as the cost of childcare for a special needs child.
It's amazing how this journey brings such highs and lows! I am absolutely amazed at how much work it takes to be her advocate in so many ways!!! Today I want to just sit back and enjoy my kids, but there are so many more phone calls to be made and things to get done to ensure that she receives the BEST care available.
Monday, May 11, 2009
Multidisciplinary Development Pediatric Clinic Evaluation
Today Jordan was evaluated at the Multidisciplinary Development Pediatric Clinic at the Gerber Center. She has been in the Feeding Clinic for the past year, but the determination was made that her challenges went beyond feeding and she was moved to this clinic after her March feeding appt. She will be evaluated every 6 months by a team of specialists who together evaluate her progress and determine her treatment plan. The appointment runs about 4 hours and Jordan did great!! She started to break down during the last hour but she made it through!
She weighed in at 20 lbs 14 oz and was 30 3/8 in long. She is about the weight of an average 12 month old and length of an average 14 month old. She is in the 25th percentile proportionately (which is good!) Everyone was pleased with her weight gain and they will continue to keep her on the same feeding program.
We started the morning by seeing the psychologist, Steve Pastyrnak. He did a developmental assessment on Jordan and found that she was cognitively at about 19 months, receptive communication was at about 19 months and expressive communication was at about 17 months. Fine motor was at about 15 months and gross motor was at about 12 months. (I didn't write these down at the time so I am pretty sure I got them right, but I will update later when I get the report if I am wrong on any of them.) I was very surprised at these results, especially the expressive communication. We have felt that Jordan's not being able to talk showed a more significant delay but he found that although she may not be using words for everything, she is clearly communicating her wants and needs. He did, however, agree that her strongest need is in speech/communication therapy and recommended we pursue a focus in this area. Her gross motor, while significantly delayed, has shown significant improvement and will continue to improve as long as we continue to work with her. We discussed discipline and some appropriate techniques to use with Jordan.
Next we saw the social worker, Lori. We went over various services and made sure that we were utilizing all resources that are available to us.
Next we saw the speech pathologist, Jane, and the dietitian. They felt that Jordan was doing a good job at expressing herself with various vowel sounds and tones, but was still struggling with progressing through new consonant sounds. They recommended Jordan receive oral motor (Beckman) therapy with speech and feeding goals. They also want us to repeat a video fluroscopic swallow study to see if we are able to pursue oral feeding. The again reinforced that Jordan's Early On therapy be speech-focused.
Next we saw the physical therapist, Lisa, and occupational therapist. They were impressed at some of the things Jordan was doing and want us to work on her carrying an object (like a ball) with 2 hands while walking, squat for a toy rather than getting down on knees, and to get up from the middle of the floor. They also want us to work on fine motor by using sidewalk chalk, color forms or window clings, and hiding objects in playdoh for her to use her fingers to dig out. They encouraged me to keep her in a rear-facing car seat until she reaches the maximum weight for rear-facing (usually about 30 lbs).
Next a nurse came in and performed a hearing evaluation. Jordan passed for both ears.
Finally we saw the nurse practitioner, Jeanie Koops and Dr. Burdo-Hartman. Jeanie did a thorough exam and felt that Jordan definitely showed significant improvements from her evaluation 1 year ago. Then Dr. Burdo-Hartman came in and checked Jordan over. They want her to be evaluated by an ophthalmologist to be evaluated for vision problems and genetic syndrome. They also want her to keep her appointment with Dr. Toriello, the geneticist to pursue any other possible syndromes.
Dr. Burdo-Hartman only did a quick 5 minute evaluation of Jordan which was kind of frustrating for me. I know that all of my concerns were addressed during the entire day of evaluations, but I had hoped for more time with her to discuss her opinion of those same topics.
The diagnoses that were listed on her discharge instructions are 1-Cerebral Palsy (gross motor function classification 1), 2-Dysphagia with Aspiration (Nissen & G-tube), 3- Dysmorphic features, and 4-Global Developmental Delay. We will be back on November 9th for another evaluation. Later in the day, all of the people that evaluated her will come together and review her information and decide if together they have any different diagnosis or treatment plan. In a few weeks, I will receive the written evaluation summary and will update with any information I have missed.
After 4 1/2 hours, Jordan and I were more than ready to go home. She fell asleep on the way home and I was able to have some lunch and then write this update. I am exhausted, yet feel excited about Jordan's future!
She weighed in at 20 lbs 14 oz and was 30 3/8 in long. She is about the weight of an average 12 month old and length of an average 14 month old. She is in the 25th percentile proportionately (which is good!) Everyone was pleased with her weight gain and they will continue to keep her on the same feeding program.
We started the morning by seeing the psychologist, Steve Pastyrnak. He did a developmental assessment on Jordan and found that she was cognitively at about 19 months, receptive communication was at about 19 months and expressive communication was at about 17 months. Fine motor was at about 15 months and gross motor was at about 12 months. (I didn't write these down at the time so I am pretty sure I got them right, but I will update later when I get the report if I am wrong on any of them.) I was very surprised at these results, especially the expressive communication. We have felt that Jordan's not being able to talk showed a more significant delay but he found that although she may not be using words for everything, she is clearly communicating her wants and needs. He did, however, agree that her strongest need is in speech/communication therapy and recommended we pursue a focus in this area. Her gross motor, while significantly delayed, has shown significant improvement and will continue to improve as long as we continue to work with her. We discussed discipline and some appropriate techniques to use with Jordan.
Next we saw the social worker, Lori. We went over various services and made sure that we were utilizing all resources that are available to us.
Next we saw the speech pathologist, Jane, and the dietitian. They felt that Jordan was doing a good job at expressing herself with various vowel sounds and tones, but was still struggling with progressing through new consonant sounds. They recommended Jordan receive oral motor (Beckman) therapy with speech and feeding goals. They also want us to repeat a video fluroscopic swallow study to see if we are able to pursue oral feeding. The again reinforced that Jordan's Early On therapy be speech-focused.
Next we saw the physical therapist, Lisa, and occupational therapist. They were impressed at some of the things Jordan was doing and want us to work on her carrying an object (like a ball) with 2 hands while walking, squat for a toy rather than getting down on knees, and to get up from the middle of the floor. They also want us to work on fine motor by using sidewalk chalk, color forms or window clings, and hiding objects in playdoh for her to use her fingers to dig out. They encouraged me to keep her in a rear-facing car seat until she reaches the maximum weight for rear-facing (usually about 30 lbs).
Next a nurse came in and performed a hearing evaluation. Jordan passed for both ears.
Finally we saw the nurse practitioner, Jeanie Koops and Dr. Burdo-Hartman. Jeanie did a thorough exam and felt that Jordan definitely showed significant improvements from her evaluation 1 year ago. Then Dr. Burdo-Hartman came in and checked Jordan over. They want her to be evaluated by an ophthalmologist to be evaluated for vision problems and genetic syndrome. They also want her to keep her appointment with Dr. Toriello, the geneticist to pursue any other possible syndromes.
Dr. Burdo-Hartman only did a quick 5 minute evaluation of Jordan which was kind of frustrating for me. I know that all of my concerns were addressed during the entire day of evaluations, but I had hoped for more time with her to discuss her opinion of those same topics.
The diagnoses that were listed on her discharge instructions are 1-Cerebral Palsy (gross motor function classification 1), 2-Dysphagia with Aspiration (Nissen & G-tube), 3- Dysmorphic features, and 4-Global Developmental Delay. We will be back on November 9th for another evaluation. Later in the day, all of the people that evaluated her will come together and review her information and decide if together they have any different diagnosis or treatment plan. In a few weeks, I will receive the written evaluation summary and will update with any information I have missed.
After 4 1/2 hours, Jordan and I were more than ready to go home. She fell asleep on the way home and I was able to have some lunch and then write this update. I am exhausted, yet feel excited about Jordan's future!
Wednesday, April 15, 2009
Milestones and Memories
I have recently come to realize that the importance of milestones and the ways we celebrate them is more for the parents than for the child. These are some of my random thoughts about this.
While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!
At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??
I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.
Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.
Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.
I am having to learn to let go.
It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.
While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!
At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??
I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.
Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.
Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.
I am having to learn to let go.
It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.
Sunday, April 5, 2009
Recovering from being sick AGAIN!!!
Jordan was sick again about 2 weeks ago. This time it started with her just not digesting her food quickly. Instead of being ready to eat after 3 hours, it took her 5-6 hours to empty her stomach. That turned into cold-like symptoms, diarrhea, and lots of gagging and spitting up. The nurse had me drop the Boost 1.5 and dilute the Pediasure with Pedialite giving her less quantity at each feeding. We also started her on a feeding pump to deliver the food at a slower rate making it less likely to cause her stomach to get upset. We were also able to use the pump to deliver food throughout the night without me having to get up for night feedings. This illness eventually ended up with a pneumonia diagnosis based on an x-ray.
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!
I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.
We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!
Thursday, February 19, 2009
First Steps!!!!!
Jordan took her first steps a few nights ago!! I was sitting on the floor playing with her and she pulled up to standing on the couch - I held my hands out to her and she took 2 exciting and quick steps to me!! I was thrilled and amazed!!! I ran upstairs and grabbed the camera and my videographer (Derrick) and we got some footage of her doing it again! I am going to try to edit it down and load it soon (it's 2 1/2 minutes and she walks in the first 30 seconds - we kept trying to get more but she wouldn't do it).
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
She hasn't done it again since, but it's so exciting to know that she's getting there!!! We continue to work with her and encourage her to walk behind toys and strengthen her legs and core muscles and work through the coordination and balance.
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