When we were at Jordan's video swallow study yesterday I was thinking, "I wonder how many of these we have had done??" I am guessing this was about the 7th, but I'm not sure. I may just have to look into this!
Jordan was so excited about yesterday! Every day...all day...every night...Jordan is asking what today and tomorrow are. She uses the phrases "school day," "Julie day," "church day," "home day." It can be very annoying to be asked the same question about 40-50 times a day, but we think it is helpful in her organizing her thoughts and anticipating what to expect. She does best with routine and does not always handle changes with schedule or routine easily.
Wednesday night she was asking about "tomorrow." I was trying to come up with the easiest way to explain that she was going to have a swallow study so I told her she would be having some tests and they were going to take pictures of her eating food with her mouth. I used the word "therapist" and yet, she didn't quite understand (even though she sees several therapists for speech and OT every week, she knows them by name, not profession). I ended up telling her she was going to a doctor because I knew she would understand.
After that, "doctor day" was the phrase she kept using to plan for the day. When we arrived at Mary Free Bed, we waited in the waiting room for a while and when Ellen came to get us, Jordan referred to her as "doctor." Ellen found it quite amusing that Jordan kept calling her "doctor." Oh well, at least Jordan understood what was going on.
The procedure for a video swallow study starts with me discussing things with the therapist and then going to have it done and then returning to discuss it and make a plan. During our first discussion, Jordan was having difficulty sitting in the small room. We got her a coloring book and crayons, but she just wanted to go play in the PT gym with the kids that were having "fun!!" Eventually, we tried turning on a video, but she continued to be frustrated that she could not be out there. This led into a screaming fit that I am sure could have been heard 2 floors above us! It lasted about 10 minutes and although I tried talking to Jordan, comforting her, scolding her and finally putting her in a time out, she continued her blood curdling scream! Ellen and I attempted to continue our discussion but eventually decided we needed to move on to the swallow study.
Ellen collected several different foods for Jordan to try, including the Trix yogurt that made up her diet for the past year or so. She also made liquids of various thicknesses, honey, nectar, and thin. Finally, she brought some cheese puffs and banana and the mesh bags we had previously used with her. She prepared it all the barium so it would show on the x-ray and we got Jordan situated in her highchair. Unfortunately, the recording device was not working so they had a video directly aimed at the screen recording it. Although this is not the quality we wanted, it was better than nothing.
Ellen started with the yogurt. Jordan had a beautiful first swallow but struggled with the residue. This is very common with her. She has a hard time cleaning out her mouth and throat and getting it down. Ellen actually went with larger bites and Jordan did quite well with them. Next she moved on to honey and then to nectar and thin. Jordan did great on all of them! We did 2-3 bites of each before moving on. Then Ellen tried some cheese puffs wrapped in a mesh bag. Jordan chewed on it and again, had a nice swallow. We moved on to banana and the same thing. Then Ellen decided to try something that we have not done, she gave Jordan a small piece of the cheese puff. Jordan chewed it okay, but had no clue how to chew. She actually chewed with her front teeth so Ellen tried to explain and show her to use her back teeth for chewing. We tried another cheese puff and she was doing great! We were in complete amazement and in awe of what we were seeing! Next, Ellen took a small piece of banana and gave it to her. Again, Jordan didn't quite know how to chew, but had a pretty good swallow. She was still struggling with actually chewing the food completely before swallowing and then clearing the residue out of her mouth and throat. Finally, since we had seen such amazing things, Ellen tried giving Jordan a drink of the nectar or thin (I can't remember) liquid straight out of the cup. Jordan's biggest challenge, again, is her lack of knowledge of how to eat and drink. She struggled with putting her lips on the cup and taking a sip, but finally figured it out and took a small one. Ellen tried one more time and then we saw a large aspiration...and silence.
Aspiration is when food goes into the airway. Normally, when this happens, there is a natural reflex that causes us to cough in an attempt to clear it out. Silent Aspiration is common in people with dysphagia. Think about when you take a drink of water and start to cough because it "went down the wrong tube." That is aspiration. Unfortunately, Jordan has a history of the silent kind and we saw it again yesterday.
Up until her aspiration we saw a slight penetration, but everything looked great!! This is very promising, but shows a couple of things. Jordan has always fatigued quickly and this seems to still be the case. We were at about 15 bites when she aspirated and it had been only about 10 minutes. She also struggles with the swallow process from an open cup. This allows us to know that we need to control the delivery of the food/liquid.
In the end, Ellen decided to try 12 weeks with one session of feeding therapy per week. Although, she said that she doesn't know that that will be enough to do much, it is the start we need. I also discussed with her the v-stim therapy and she is going to talk to some people she knows that are more aware of it and discuss Jordan with them. She feels that it could potentially help her with more muscle control awareness. We know we have a long way to go, and we are realistic with our goals, but we are not going to give up!!
Please pray that we can easily schedule Jordan's therapy and that she is cooperative during the sessions.
Thank you so much!!!
Friday, March 23, 2012
Wednesday, March 21, 2012
Another Video Swallow Study Tomorrow Morning
Tomorrow Jordan will go in for another video swallow study. She has not had one for over a year and has had no therapy for almost as long. We don't know what to expect. Since her severe aspiration in December, she has not taken ANYTHING by mouth. Nothing. For a long time she was getting small amounts of yogurt, but that all came to an abrupt end when she started coughing and telling us that her swallow hurt. We are hoping that Jordan is willing to accept foods and will be much more cooperative and sit still better than in the past.
This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy. Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try. After the swallow study, she wants to have a FEEST study done. This is a more complex swallow study and I am yet undetermined how I think she will tolerate it. I am not sure what the doc will want to do after that, but we see her in August again.
Another interesting thing that has happened is that we switched insurance carriers. We are now with Blue Cross Blue Shield Michigan. Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years. Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest. This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....
Well, I was talking with the case manager about the staining on Jordan's teeth. (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface). We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part). Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc. I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues. When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her. I had never thought of that. I am my child's advocate, yet I had not fought for her. Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...
This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy. Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try. After the swallow study, she wants to have a FEEST study done. This is a more complex swallow study and I am yet undetermined how I think she will tolerate it. I am not sure what the doc will want to do after that, but we see her in August again.
Another interesting thing that has happened is that we switched insurance carriers. We are now with Blue Cross Blue Shield Michigan. Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years. Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest. This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....
Well, I was talking with the case manager about the staining on Jordan's teeth. (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface). We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part). Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc. I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues. When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her. I had never thought of that. I am my child's advocate, yet I had not fought for her. Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...
Thursday, February 9, 2012
The Eve of Jordan's Annual Evaluation
Every year Jordan is evaluated by the Neurodevelopmental Specialist.
Every year I plan for several weeks; writing down concerns and questions.
Every year I get to the eve of that appointment and I am terrified.
Every year the evaluation goes well.
Every year I tell myself that it's no big deal.
Tonight I am finalizing my list of questions and wondering if I have covered everything. I know that there is more that I have thought about or that has concerned me over the past year, but I don't feel like I can keep thinking about it without losing my mind. I am sure that tomorrow morning things will go well and Jordan will be on her best behavior and we will come back home and I will wonder why I get so worked up over these things.
I plan to discuss some of our "normal" issues - weight gain/growth, temper tantrums and behavioral concerns, potty training...and the lack of success, etc. All of these are easily covered and we are normally on the same page with things and they may give me some handouts and suggestions. Easy.
However, this year I have some additional things that I am planning on being a little pushy about.
*Jordan has only been in feeding therapy for 12 weeks out of the past 1.5 years. I am sick and tired of waiting for her to get older so the therapists at Mary Free Bed will work with her to teach her to swallow! I want my daughter evaluated by a recognized pediatric feeding program that will provide her therapy now...and I want Vital Stim therapy. We are looking at Cleveland, Cincinnatti, Mayo or any other the doc recommends - we will figure out how to make it happen later.
*I want her to be evaluated by a GI doc - someone that will tell me why we are keeping her on reflux meds but we have no medical documentation (other than the visual appearance of her esophagus during her scope a year ago) to explain what is going on in there - I want an upper gi, esophageal ph study, and any other tests that can help us understand her better.
*I want an evaluation for her sensory processing issues - she is really struggling with this at times and I need to know how I can help her.
*I want her to be referred to a dental specialist for the horrible brown stains that cover her teeth - having them partially cleaned twice a year by her dentist is unacceptable. We need to figure out what is causing them and get them completely cleaned.
*I want to know why she has told me several times a day for 4 months that her "bottom hurts" and I have taken her to her peds office twice and they can't figure out what is wrong. We have tried all sorts of things and nothing helps. She doesn't like to sit in her high chair, hold her on my hip, or anything that puts pressure on her bottom. Something is wrong and I need to know what!
*I want another MRI done. She had one when she was about a year old and the doc that recommended it said it should be done as a baseline so another could be done in 3-4 years. Well, it's been almost 4 years. I want to see if anything has changed and if anything else can be detected.
That's all...
I sure hope she'll listen...and be willing to understand that I will do ANYTHING to understand Jordan better and to help her to move forward in her development.
More than anything I need to know that Jordan and I and our appointment tomorrow is covered in prayer. I know that God loves Jordan even more than I do and that He is in control (not me) and that I need to let Him lead me tomorrow so that I don't try to stray from the path He has marked for her. I love my baby girl and would do anything for her, but sometimes I need to pull back and let Him handle things. Please pray that He is in control of tomorrow's evaluation.
Thank you!
Every year I plan for several weeks; writing down concerns and questions.
Every year I get to the eve of that appointment and I am terrified.
Every year the evaluation goes well.
Every year I tell myself that it's no big deal.
Tonight I am finalizing my list of questions and wondering if I have covered everything. I know that there is more that I have thought about or that has concerned me over the past year, but I don't feel like I can keep thinking about it without losing my mind. I am sure that tomorrow morning things will go well and Jordan will be on her best behavior and we will come back home and I will wonder why I get so worked up over these things.
I plan to discuss some of our "normal" issues - weight gain/growth, temper tantrums and behavioral concerns, potty training...and the lack of success, etc. All of these are easily covered and we are normally on the same page with things and they may give me some handouts and suggestions. Easy.
However, this year I have some additional things that I am planning on being a little pushy about.
*Jordan has only been in feeding therapy for 12 weeks out of the past 1.5 years. I am sick and tired of waiting for her to get older so the therapists at Mary Free Bed will work with her to teach her to swallow! I want my daughter evaluated by a recognized pediatric feeding program that will provide her therapy now...and I want Vital Stim therapy. We are looking at Cleveland, Cincinnatti, Mayo or any other the doc recommends - we will figure out how to make it happen later.
*I want her to be evaluated by a GI doc - someone that will tell me why we are keeping her on reflux meds but we have no medical documentation (other than the visual appearance of her esophagus during her scope a year ago) to explain what is going on in there - I want an upper gi, esophageal ph study, and any other tests that can help us understand her better.
*I want an evaluation for her sensory processing issues - she is really struggling with this at times and I need to know how I can help her.
*I want her to be referred to a dental specialist for the horrible brown stains that cover her teeth - having them partially cleaned twice a year by her dentist is unacceptable. We need to figure out what is causing them and get them completely cleaned.
*I want to know why she has told me several times a day for 4 months that her "bottom hurts" and I have taken her to her peds office twice and they can't figure out what is wrong. We have tried all sorts of things and nothing helps. She doesn't like to sit in her high chair, hold her on my hip, or anything that puts pressure on her bottom. Something is wrong and I need to know what!
*I want another MRI done. She had one when she was about a year old and the doc that recommended it said it should be done as a baseline so another could be done in 3-4 years. Well, it's been almost 4 years. I want to see if anything has changed and if anything else can be detected.
That's all...
I sure hope she'll listen...and be willing to understand that I will do ANYTHING to understand Jordan better and to help her to move forward in her development.
More than anything I need to know that Jordan and I and our appointment tomorrow is covered in prayer. I know that God loves Jordan even more than I do and that He is in control (not me) and that I need to let Him lead me tomorrow so that I don't try to stray from the path He has marked for her. I love my baby girl and would do anything for her, but sometimes I need to pull back and let Him handle things. Please pray that He is in control of tomorrow's evaluation.
Thank you!
Monday, February 6, 2012
Feeding Tube Awareness Week - February 5-11, 2012
Well, I might as well post about Feeding Tube Awareness Week on my blog that I somehow never manage to keep updated! I just found out about this a few months ago and it wasn't until a few weeks ago that I decided I wanted to do something for it. I contacted Jordan's Early Childhood Special Education teacher, Pam, and asked her if I could come in to her class and talk to the kids about Jordan and her feeding tube. Pam loved the idea and I am scheduled to go in on Wednesday morning. That led me to thinking about who else Jordan has regular contact with that may benefit from learning more about her and her tube. I checked with our church's Children's Ministry Director, Michelle, and she also loved the idea of telling the other preschool kids at church about it.
Yesterday, I went in and spoke with the kids and teachers. It went pretty well. I read the book "My Tubey" and then shared a little bit about Jordan and told them how she gets her food (fortunate for me, it was feeding time so we put on her backpack and hooked her up). My favorite comment was the little boy who raised his hand and responded "when I was a baby, I was sick and that's how I got my food."
I also wrote a letter and had a list of helpful resources that I sent home with the parents. Please take the time to read and learn :)
Feeding Tube Awareness Week Letter
Feeding Tube Awareness Week Resources
Thanks for taking the time to learn more about feeding tubes and those who live with them or love someone who has one!!
Yesterday, I went in and spoke with the kids and teachers. It went pretty well. I read the book "My Tubey" and then shared a little bit about Jordan and told them how she gets her food (fortunate for me, it was feeding time so we put on her backpack and hooked her up). My favorite comment was the little boy who raised his hand and responded "when I was a baby, I was sick and that's how I got my food."
I also wrote a letter and had a list of helpful resources that I sent home with the parents. Please take the time to read and learn :)
Feeding Tube Awareness Week Letter
Feeding Tube Awareness Week Resources
Thanks for taking the time to learn more about feeding tubes and those who live with them or love someone who has one!!
Friday, December 2, 2011
New Inspiration and Looking Ahead
Again, it has been a while...oh well. By now, you would think I would not even expect that I could post once a month. I suppose it takes a HUGE event to force me to make the time to blog!!
About a month ago I found some interesting groups on Facebook that connected me to people and resources regarding people with feeding tubes. Some of my favorites are:
Feeding Tube Awareness - great resources!
Belly Buttons - Jordan is using their belly buttons every day!!
TUBEalicious Tushies - just received some med-port covers - hope to never feed the floor again!!!
Through these resources I feel I have become more educated on what I can be doing to better care for Jordan and her tube. The products available are amazing and if money were not issue, I would keep buying things!!!
These resources have, in turn, led me to an amazing organization that recently posted a video on youtube.com. I keep watching it over and over and over. I posted it on my facebook page, but I encourage everyone to please watch this video!!!
In this video, Rydr is very similar to Jordan in several ways. His listed diagnosis is Hypotonic Cerebral Palsy...Jordan has a diagnosis of Cerebral Palsy - class 1 and Hypotonia...it seems like they just combined them. Jordan had a very difficult birth and was hospitalized soon after...Ryder was in the NICU for 6 weeks following his difficult birth. Rydr was sitting upside down on his mom's lap in the waiting room...upside down is Jordan's favorite position!! Jordan receives school speech therapy 2 times a week and OT once a week and privately receives speech/OT 2 times a week...Rydr receives speech therapy 2 times a week, OT once a week, PT once a week and is also seeing the speech path, Jan, in the video 2 times a week.
Along with these similarities is one HUGE difference..."he has never taken a break in feeding therapy." Rydr has been receiving feeding therapy since being in the NICU...Jordan has received feeding therapy off and on since her diagnosis of failure to thrive at 9 months old. Every time we are told to come back in 6 months or a year. Most recently, we were discharged last March with the instructions to bring her back when she was more willing to follow instructions (or "behaviorally responsive"). That vague direction left me feeling as though there was no more we could be doing for her.
Until I saw that video.
Now, I am seeking every opportunity to give Jordan a chance to learn to swallow. Even though she may not be fully responsive to directions, she could still benefit from the practice of swallowing and various techniques of therapy. I had never heard of VitalStim therapy and now I have read several articles (including: New Study) about it and understand how and why it could benefit Jordan. I have spoken with Jordan's current speech path at the Center for Childhood Development and she recommended looking into evaluations at the Cleveland Clinic's new Pediatric Center for Airway, Voice and Swallowing Disorders.
Although we are unsure how we will be able to fund this evaluation and the possibility of continuing treatment, we feel it is absolutely in Jordan's best interest for us to provide her every opportunity for improvement. I have learned that Jordan's Neurodevelopmental Specialist (the one that oversees and prescribes her feeding treatments) does not approve of the VitalStim therapy and therefore, it is not available in the Grand Rapids area. This infuriates me!!!
Over the next few weeks I hope to be in contact with the National Foundation of Swallowing Disorders (the organization that put out the video) and the Cleveland Clinic and be on track with information and appointments moving us toward a treatment plan for Jordan. Please be in prayer that we are able to make the necessary contacts and find a way to afford this program.
On a brighter note, we also received notification yesterday that we were awarded the $1000 grant that we reapplied for!!!!! It will be available after the first of the year for us to use toward speech and OT at the Center for Childhood Development. I am so excited to have the opportunity to continue Jordan's treatment with her amazing therapist, Julie!!!!! We have seen more advancement in her speech in the past 6 weeks since she has been working with her than we have seen in quite a while. I love that she has taught me the PROMPT method of therapy (well, at least some of the cues...) and they are helping Jordan make sounds more clearly than ever before!! I am so excited to continue working with her!!
Well, that is all for now. It's Friday night...pizza and movie night!!!!!
About a month ago I found some interesting groups on Facebook that connected me to people and resources regarding people with feeding tubes. Some of my favorites are:
Feeding Tube Awareness - great resources!
Belly Buttons - Jordan is using their belly buttons every day!!
TUBEalicious Tushies - just received some med-port covers - hope to never feed the floor again!!!
Through these resources I feel I have become more educated on what I can be doing to better care for Jordan and her tube. The products available are amazing and if money were not issue, I would keep buying things!!!
These resources have, in turn, led me to an amazing organization that recently posted a video on youtube.com. I keep watching it over and over and over. I posted it on my facebook page, but I encourage everyone to please watch this video!!!
In this video, Rydr is very similar to Jordan in several ways. His listed diagnosis is Hypotonic Cerebral Palsy...Jordan has a diagnosis of Cerebral Palsy - class 1 and Hypotonia...it seems like they just combined them. Jordan had a very difficult birth and was hospitalized soon after...Ryder was in the NICU for 6 weeks following his difficult birth. Rydr was sitting upside down on his mom's lap in the waiting room...upside down is Jordan's favorite position!! Jordan receives school speech therapy 2 times a week and OT once a week and privately receives speech/OT 2 times a week...Rydr receives speech therapy 2 times a week, OT once a week, PT once a week and is also seeing the speech path, Jan, in the video 2 times a week.
Along with these similarities is one HUGE difference..."he has never taken a break in feeding therapy." Rydr has been receiving feeding therapy since being in the NICU...Jordan has received feeding therapy off and on since her diagnosis of failure to thrive at 9 months old. Every time we are told to come back in 6 months or a year. Most recently, we were discharged last March with the instructions to bring her back when she was more willing to follow instructions (or "behaviorally responsive"). That vague direction left me feeling as though there was no more we could be doing for her.
Until I saw that video.
Now, I am seeking every opportunity to give Jordan a chance to learn to swallow. Even though she may not be fully responsive to directions, she could still benefit from the practice of swallowing and various techniques of therapy. I had never heard of VitalStim therapy and now I have read several articles (including: New Study) about it and understand how and why it could benefit Jordan. I have spoken with Jordan's current speech path at the Center for Childhood Development and she recommended looking into evaluations at the Cleveland Clinic's new Pediatric Center for Airway, Voice and Swallowing Disorders.
Although we are unsure how we will be able to fund this evaluation and the possibility of continuing treatment, we feel it is absolutely in Jordan's best interest for us to provide her every opportunity for improvement. I have learned that Jordan's Neurodevelopmental Specialist (the one that oversees and prescribes her feeding treatments) does not approve of the VitalStim therapy and therefore, it is not available in the Grand Rapids area. This infuriates me!!!
Over the next few weeks I hope to be in contact with the National Foundation of Swallowing Disorders (the organization that put out the video) and the Cleveland Clinic and be on track with information and appointments moving us toward a treatment plan for Jordan. Please be in prayer that we are able to make the necessary contacts and find a way to afford this program.
On a brighter note, we also received notification yesterday that we were awarded the $1000 grant that we reapplied for!!!!! It will be available after the first of the year for us to use toward speech and OT at the Center for Childhood Development. I am so excited to have the opportunity to continue Jordan's treatment with her amazing therapist, Julie!!!!! We have seen more advancement in her speech in the past 6 weeks since she has been working with her than we have seen in quite a while. I love that she has taught me the PROMPT method of therapy (well, at least some of the cues...) and they are helping Jordan make sounds more clearly than ever before!! I am so excited to continue working with her!!
Well, that is all for now. It's Friday night...pizza and movie night!!!!!
Thursday, September 29, 2011
Catching Up...Oh, Nevermind...Moving Forward
Yes, it has been a long time.
Yes, I have wanted to post many times over the past 4 months.
Yes, I want to get everyone up to date on things.
But, life is too busy for me and it seems like such a HUGE task that I have turned away from posting what was happening because I felt that I needed to update everyone. I have decided that although I hope to post about some of the adventures the past few months have brought us, I need to just be free to post as I need and am able to.
So, that brings us to today...
Jordan is now in school 2 days a week. Some days I am glad...some days I wish she was here everyday. Days like today...I wish she had been in school.
Over the past few weeks I have come to an difficult decision about parenting my special daughter. I prefer to not take her in public. I prefer to keep her at home or in a place where I don't have to worry about her meltdowns, screaming attacks, temper tantrums and overly active behavior. I prefer to not be judged by my daughters behavior.
That may seem harsh to you.
My guess is that you don't have a child that is often completely uncontrollable. A child that will randomly start screaming at the top of her lungs for no reason...and then realize that she likes the sound and the way if makes her feel and she will keep doing it over and over and over and over...even though you are just trying to finish your grocery shopping. Or a child that has the inability to swallow and yet has a HUGE desire to eat, thereby, making your family night out at a restaurant a horrible experience because she keeps grabbing everything that is within arms reach and if you try to take it away she throws it...even shattering a plate on the floor. Or a child that will throw herself on the couch...or the floor...or against the wall because it feels good.
My life is not normal. My life is challenging. My life is exhausting. My life is full of blessings that no one will ever understand.
I wish I could see the blessings more clearly through the screaming and stress.
I wish I could understand why she does the things she does and what I can do to help her.
I wish I could get rid of the guilt I feel for just wanting a break from her.
I wish...
Yes, I have wanted to post many times over the past 4 months.
Yes, I want to get everyone up to date on things.
But, life is too busy for me and it seems like such a HUGE task that I have turned away from posting what was happening because I felt that I needed to update everyone. I have decided that although I hope to post about some of the adventures the past few months have brought us, I need to just be free to post as I need and am able to.
So, that brings us to today...
Jordan is now in school 2 days a week. Some days I am glad...some days I wish she was here everyday. Days like today...I wish she had been in school.
Over the past few weeks I have come to an difficult decision about parenting my special daughter. I prefer to not take her in public. I prefer to keep her at home or in a place where I don't have to worry about her meltdowns, screaming attacks, temper tantrums and overly active behavior. I prefer to not be judged by my daughters behavior.
That may seem harsh to you.
My guess is that you don't have a child that is often completely uncontrollable. A child that will randomly start screaming at the top of her lungs for no reason...and then realize that she likes the sound and the way if makes her feel and she will keep doing it over and over and over and over...even though you are just trying to finish your grocery shopping. Or a child that has the inability to swallow and yet has a HUGE desire to eat, thereby, making your family night out at a restaurant a horrible experience because she keeps grabbing everything that is within arms reach and if you try to take it away she throws it...even shattering a plate on the floor. Or a child that will throw herself on the couch...or the floor...or against the wall because it feels good.
My life is not normal. My life is challenging. My life is exhausting. My life is full of blessings that no one will ever understand.
I wish I could see the blessings more clearly through the screaming and stress.
I wish I could understand why she does the things she does and what I can do to help her.
I wish I could get rid of the guilt I feel for just wanting a break from her.
I wish...
Friday, June 3, 2011
Reality Check
Today was another one of those challenging days for me. I find that when I have those days, this is where I come to process, share, and figure out what to do next. A year ago, we decided to pursue private therapy for Jordan for the summer and had her receive speech and some OT through the The Center for Childhood Development. We had an amazing experience!! The thearpy is a "whole body" approach. Although her focus was speech, they addressed all aspects of her needs, particularly her sensory processing. We were thrilled with her progress in these 3 months and she loved going there!
Unfortunately, as it is in the world of therapy and special needs, nothing is free...or even inexpensive. The center does not participate with any insurance so we paid out of pocket for the therapy (funded by my parents) and submitted to our insurance company for reimbursement. Although we submitted in August for the first part of the summer and in October for the second half, it was March before the first part was covered and the second still has not gone through. Overall, we paid around $1500 for her therapy and have been reimbursed $85. Yes, it is expensive to have a child with special needs and to try to get quality help. Derrick is pushing the HR people at work regarding the second portion of the summer.
Because we don't have the money to continue to invest in private therapy, we have been researching funding options. The director at the center, informed me about a grant through the The Family Hope Foundation. We applied in April and have been waiting, anticipating a response on June 1st. I have been working gathering the information they required if you qualify so that we could quickly move into therapy and utilize these funds.
I guess I sometimes have too positive a view on things. I guess I assumed that Jordan would qualify and we would at least be able to offset our expenses even if it didn't cover the full amount. I guess I just want what is best for Jordan. I guess yesterday's letter was a huge reality check for me. We did not qualify.
I know that in their letter they stated that they had a 63% increase in applicants from previous times and that they are seeking additional funding and to not be discouraged and to apply again. But what about now? What am I supposed to do to help give my significantly speech delayed daughter the gift of communication?
Derrick and I have talked numerous times about how we are comfortable with Jordan's feeding tube as a life-long reality. She will be able to function fairly normally if she can consume some small amounts of food and drink in our food-focused society, all while supplementing her nutrition with tube feedings. However, if she is unable to communicate clearly, she will be outcast by her peers, struggle in school, and have difficulty finding success in the working world. Speech is necessary for success in the world we live in. This is reality.
I appreciate the "free" therapy we have received for her since she was 10 months old. However, nothing has come close to comparing to the therapy and results we saw in the 3 month period we paid for her services. Unfortunately, we don't have an income level that allows us the freedom for that option. I know that there are families out there that could easily cover the $110 per visit therapy, we are not one of them. We even discussed if we could afford two or even one visit per month and we don't know if we can do it. This is our reality.
I hate to ask my parents to fund therapy again. Although they would probably do so, asking for money makes me feel inadequate. I know my husband struggles with the fact that he doesn't make more money to provide for our family. He works 2 jobs and we are careful about how we spend our money, but there never seems to be enough. The saying goes, money can't make you happy, but if you don't have money, life sure has some additional challenges.
I know that God is in control. I know that he loves Jordan more than I do. I know that I can't know what the outcome of her life will be. I know that He will carry me through this obstacle, just as he has every other time I have faced a challenge. I know that as her mom I want to do EVERYTHING in my power to help her and right now I feel helpless. I know that God is teaching me something through this...it will just take time to learn what that is and in the meantime, it is hard.
I don't know what will happen next. I know I can apply for the grant again in October and will find out in December if we qualify. I don't know if I want to even anticipate that funding and then be let down. Maybe next time I will approach it with a "reality checked" mind.
Unfortunately, as it is in the world of therapy and special needs, nothing is free...or even inexpensive. The center does not participate with any insurance so we paid out of pocket for the therapy (funded by my parents) and submitted to our insurance company for reimbursement. Although we submitted in August for the first part of the summer and in October for the second half, it was March before the first part was covered and the second still has not gone through. Overall, we paid around $1500 for her therapy and have been reimbursed $85. Yes, it is expensive to have a child with special needs and to try to get quality help. Derrick is pushing the HR people at work regarding the second portion of the summer.
Because we don't have the money to continue to invest in private therapy, we have been researching funding options. The director at the center, informed me about a grant through the The Family Hope Foundation. We applied in April and have been waiting, anticipating a response on June 1st. I have been working gathering the information they required if you qualify so that we could quickly move into therapy and utilize these funds.
I guess I sometimes have too positive a view on things. I guess I assumed that Jordan would qualify and we would at least be able to offset our expenses even if it didn't cover the full amount. I guess I just want what is best for Jordan. I guess yesterday's letter was a huge reality check for me. We did not qualify.
I know that in their letter they stated that they had a 63% increase in applicants from previous times and that they are seeking additional funding and to not be discouraged and to apply again. But what about now? What am I supposed to do to help give my significantly speech delayed daughter the gift of communication?
Derrick and I have talked numerous times about how we are comfortable with Jordan's feeding tube as a life-long reality. She will be able to function fairly normally if she can consume some small amounts of food and drink in our food-focused society, all while supplementing her nutrition with tube feedings. However, if she is unable to communicate clearly, she will be outcast by her peers, struggle in school, and have difficulty finding success in the working world. Speech is necessary for success in the world we live in. This is reality.
I appreciate the "free" therapy we have received for her since she was 10 months old. However, nothing has come close to comparing to the therapy and results we saw in the 3 month period we paid for her services. Unfortunately, we don't have an income level that allows us the freedom for that option. I know that there are families out there that could easily cover the $110 per visit therapy, we are not one of them. We even discussed if we could afford two or even one visit per month and we don't know if we can do it. This is our reality.
I hate to ask my parents to fund therapy again. Although they would probably do so, asking for money makes me feel inadequate. I know my husband struggles with the fact that he doesn't make more money to provide for our family. He works 2 jobs and we are careful about how we spend our money, but there never seems to be enough. The saying goes, money can't make you happy, but if you don't have money, life sure has some additional challenges.
I know that God is in control. I know that he loves Jordan more than I do. I know that I can't know what the outcome of her life will be. I know that He will carry me through this obstacle, just as he has every other time I have faced a challenge. I know that as her mom I want to do EVERYTHING in my power to help her and right now I feel helpless. I know that God is teaching me something through this...it will just take time to learn what that is and in the meantime, it is hard.
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I don't know what will happen next. I know I can apply for the grant again in October and will find out in December if we qualify. I don't know if I want to even anticipate that funding and then be let down. Maybe next time I will approach it with a "reality checked" mind.
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